Erik Quinn: The Heart of a Family

NANCY WAS HERE

2009-09-21T13:37:00.000-07:00

I've been staring at the page for what seems like days
I guess I put this one off for a while
Did I see a tear fall from your eyes
Or did you laugh so hard that you cried
When I served my secrets on a silver tray to you

-- "Every Word Was a Piece of My Heart" (Bon Jovi)

This is the most difficult post I have written so far. In fact, I'm not sure how to begin.

When I came back from a short trip to the valley this weekend, my mother gave me a couple of orange 3-ring binders with photos of Erik and our family covering each one. Inside I was shocked to see at least two years of what I have written on this blog and hundreds of your comments, too. She had previously printed them all for my elderly grandmother. When my grandmother passed away, the folders came back to me. Knowing that my grandmother had read a lot of what is here is strange and comforting at the same time. We never talked about my blog. Or Williams syndrome, really.

I have always enjoyed writing stories and journals, even before Erik was born. When Erik was diagnosed, it felt natural to start writing here. When I was discouraged, I heard a voice. The one I previously told you about. The one that said "SHOUT."

Seeing my words on paper makes me more than a little uncomfortable. I don't know what to do with them. They are much too real somehow. It was easier to neatly place them here and turn the computer off when I was done to keep them contained. This morning when I casually opened the notebooks and began flipping through the pages, thousands of words seeped back into me against my will. They are difficult to read, sharp, and slightly foreign. I was absolutely shocked by my own honesty, as I have more than a little difficulty saying anything more profound than today's weather report out loud to anyone outside of my closest friends and family members. I found myself poring over each page, unable to look away. Reading my words brought each forgotten experience with Erik back in Technicolor. If Erik hadn't cleared his throat and loudly but politely reminded me he had requested waffles for breakfast, I would still be bent over my kitchen island, elbows glued to the counter, reading. As it turns out, I have written quite a bit here.

In fact, this will be my 595th post.

I have learned a lot since I learned to shout. The diagnosis of Williams syndrome has profoundly changed my life. I have been reminded in many ways that my story is not remotely close to being unique. Others walk this very path every day and have done so for centuries. Most of them just don't seem to talk about it. I know that I have been given a strong desire to put it into words, and I have done that here for years now. I am so thankful I did it, because I can now look back at what I have written and see documentation of the progress I have made. I admit that I began writing simply to unload all of the searing pain I felt at the time and didn't really know or care who would actually read what I wrote. I just wanted to be rid of the stuff. As time passed and my pain subsided, my focus shifted, and I ended up meeting some of the most amazing people around the world who have inspired me to no end. What a gift that has been. I have even had the opportunity to meet some of you and consider many of you lifelong friends.

I have learned that despite WS or any other challenges I may face, I will survive. I have learned there always will be horrible days. Days when tears don't seem to dry. Days when my heart hurts so badly that it feels like I can't physically bear living another minute. However, now I know otherwise. I know my own strength, and I simply grit my teeth until I can breathe again. It's old habit now and doesn't scare me in the slightest to let my feelings flow through me and be gone. Fortunately, the bad days are so spread out now that I no longer dread them. If anything, they tend to sneak up on me, make my life a little hellish for a short time, and then disappear as quickly as they came. I know that they always will, and I'm okay with that.

The boy I originally wrote about is gone, too. No longer do I have a slumped over, drooling infant of a child who can't hold a spoon. He asks me to watch his favorite shows on television, is learning to read, and loves sweets. He can tolerate noisy environments and has friends. He has strong opinions. He likes saying things in Spanish. He loves music and jokes. He walks, runs, and jumps. I have finally allowed the dreams that I had for him before he was born go and am now getting to know his own. I have learned that what is considered a "birth defect" has given him wonderful gifts and abilities other children don't seem to have. I am completely in love with this boy and the people he has brought to me, although the journey we are taking will never be an easy one. On some days it still seems impossible, but I know it's not.

The voice I hear from time to time has been in my ear again. It has been a bit of a pest for these past few months, and I know it's time for me to listen to it. I'm being pulled in another direction, away from my writing here. I have no idea what this means, but I am confident I will know what to do when the time comes. I think wanting a change is a very positive sign.

As I thought about writing this post, I realized that shouting was my way of making my experience real to myself and the people around me. To validate my own role as a human being experiencing something painful and intense. To communicate my feelings without having to explain anything out loud and risk bursting into tears. A few of my friends and relatives stopped reading this blog because it was "too hard" or "too sad." I feel sorry for them because they missed out on the joy I have discovered along the way. Every post here, happy or sad, has brought me healing and understanding.

In the end, I want to leave some evidence that I was here so that others might come across it and perhaps believe that they will survive just like I have. That the pain will fade to a tolerable level and that everyday life will creep in again. That laughter and grocery shopping and car maintenance and relationships and sunrises will take over once again with a new, unexpected beauty. That each and every one of the accomplishments of their children with WS will make them feel like they can touch the heavens with their fingertips and how sorry they might even begin to feel for the parents who have it easier than they do -- because they might never know that particular kind of heart-busting joy after so much struggle. That although they might see disability in their child as a curse, they also might eventually appreciate the gifts that it brings them, too. That no soothing cliches or advice here or anywhere will provide them comfort until they are ready to receive it. That it's okay to be angry, grieve, ask for help, or even laugh at the ridiculous mixed in with the tragic. To tell the rest of the world to get bent when necessary and do what works for them, no matter how it looks. That they will be okay, but that it's perfectly fine not to be in the meantime. I have learned that being "okay" takes a hell of a lot of time.

So I'm hanging up for now. To everybody who has come here to get to know me and Erik, thank you. You have helped me each and every step of the way, whether your life has been touched by Williams syndrome or not. I am amazed that the comments that have come my way have been almost nothing but supportive. There has very little judgment, hate, or pity -- just love. That's exactly what I needed to survive.

And I have.

For those of you who are new to this journey with your child, I am leaving my words here as long as they are allowed to remain. My heart aches for you, yet I quietly celebrate what you will learn and love with time. You will also quickly learn that you are part of the same strange, beautiful family, and you will hear the echoes of your own story from unfamiliar people and places over the years. We all seem to be singing the same song.

My only real advice is that if you lose your way or become afraid, stop looking so far ahead. Instead, concentrate on the ancient path worn into the earth in front of you. Take one step at a time. That's what I have done and will continue to do for the rest of my life. Just don't forget to glance at the rock beside you and see what I have carved there over the years before it all fades under the carvings of others destined to follow us. If you can still read what I have written, maybe you'll wonder who I was and where I ended up.

Maybe you'll even try to look me up sometime.

Wounded

2009-09-16T10:08:00.000-07:00

This week Erik got off the school bus with a relatively deep scratch across one cheek. This was paired with the recurrent wound that appeared a few days earlier on his nose. He sustains the nasal injury every few months, and we are never able to determine its origin. A round scab simply materializes in the same place, perfectly centered on the bridge of his slightly upturned nose like a dermatologic crop circle. With the additional flesh wound freshly etched on his cheek, he looked a little like had had just finished a UFC cage fight.

I asked Erik what happened, not really expecting an answer. He stated very matter of factly that a little boy (who shall remain nameless in the interest of preventing vigilante justice) had scratched him at school.

When we arrived at school the next day, we were greeted by apologies that we had not received a phone call about the incident. Because Erik's teacher has been terrific about calling me about Erik's accomplishments and occurrences in the classroom, I reassured her that I was not upset. The teacher confirmed the very boy Erik named had scratched him while they were both standing in line at the sink to wash their hands. When confronted, the boy had apparently confessed, but an adult hadn't seen exactly what occurred.

I sometimes witness Erik standing too close to other children, making them visibly uncomfortable, perhaps asking them a hundred times what their name is, despite the fact he was in their class last year, or attempting to spark a conversation by emitting animal noises. He often doesn't understand that he is surrounded by a tough crowd and continues on with his act, which is sometimes quite painful for me to watch. Some children simply walk away. If they know their parents are watching, they will often stand still and attempt to be polite, but I can easily see their true feelings just underneath the surface. Children are much too honest to hide much for very long. At this age, they are beginning to be slightly cruel and very competitive, loudly pointing out Erik's differences to others to pad their own budding sense of self. The more curious ones ask me questions about Erik's behavior, and I am slowly getting used to providing simplified answers. There are some who don't like having someone who is so different pressing his nose directly against theirs.

In this case, what happened will remain a mystery.

Maybe this child accidentally scratched my son with an unruly hand making a sudden, uncontrolled motion. Maybe he was throwing a tantrum of his own. Or maybe he waited until the adults weren't watching and hurt the strange kid who just refused to get out of his face. In any case, Erik undoubtedly loves this kid today every bit as much as he did a week ago.

And I suppose that is one of the things that makes my son so "strange" and "different."

First Day of School 2009

2009-09-08T13:09:00.000-07:00

Erik's last year of preschool started today. I left him in the humming chaos of the classroom and made it to my car before my eyes started to water.

Life Goes On

2009-09-03T05:51:00.000-07:00

Ob-la-di, ob-la-da,
Life goes on, brah
La la how the life goes on
Ob-la-di, ob-la-da
Life goes on, brah
La la how the life goes on

-- "Ob-La-Di, Ob-La-Da" (The Beatles)

We had yet another dentist appointment yesterday. I have been there so often that I feel like I should at least have my own coffee cup in the employee lounge. When we were first scheduled for what they call "fun visits" months ago, I was a complete skeptic. It seemed that for months Erik's anxiety about the dentist was only intensifying. Smack dab in the middle of the process, the wall of gleaming teeth that was Dr. Mike retired and was replaced by a comely 12-year-old named Dr. Brent, which only served to sour my attitude further. In the end, though, the efforts that originally seemed futile have actually worked wonders. Color me surprised.

Yesterday after Erik and Stinky-Dog rode the orange examination chair like a lame mechanical bull, Erik was allowed to play with the suction tube, which he considers one of his beloved vacuums. He ran it over Stinky-Dog's scruffy face and flaccid body, and the stuffed animal chuckled and begged Erik to stop in his throaty, pack-a-day grumble. By the time Dr. Brent joined us in the room, Erik easily opened his mouth wide for the first time and demonstrated that his teeth were completely free of cavities. I was informed that our brushing techniques were obviously much more effective than the ones typical children used on their own teeth (I allowed myself to feel a little smug, as this feeling is rare and quite precious). Erik even allowed a nasty-tasting fluoride solution to be swabbed over his teeth with a brush and successfully vacuumed out the excess on his own with the suction tube for the very first time, seeming to enjoy the juicy sound of it. He was rewarded with two balloons and a brief session of stimming/spinning on the wheels of the toys in the waiting room, where I discovered a Ms. Pac Man machine. Score.

This summer has been one of change. I have made some difficult decisions regarding my personal life and am striving to be a better friend, daughter, sister, aunt, mother, and wife. I desire to feel more connected with the outside world again and have sought help to sort things out. I was amazed at how intensely the emotions I felt a few years ago easily bubbled to the surface like new when I described my experiences out loud. Today I meet a part of my father's biological family that my parents recently discovered through their research over the years. From what I have heard, they are amazing. Ironically, I lost my grandmother last week, who was a very large part of my childhood. Our relationship over the past few years has been difficult, but her love for Erik seemed to smooth things over and brought us together one last time, which happened to be the day before she passed away. I have come to believe that one of Erik's jobs here on earth is to bridge the sometimes incredibly profound gaps between the people around him, and he is an absolute expert at it, even at the ripe old age of 4.

Today we attend our last IFSP (IEPs begin next year). We are hoping to say goodbye to diapers this year and are excited to witness more of the progress he has shown us every year.

Break Time

2009-08-13T10:02:00.000-07:00

I'm taking a break from writing, but I'll be back in September, hopefully with some amusing blog fodder. We have our IFSP and school in the very near future.

I Cast All My Caries

2009-08-04T10:22:00.000-07:00

I took Erik to the dentist today. Dr. Mike apparently retired, so Dr. Brent took over. After I got over the initial shock of having what appeared to be a sixth grader take care of my son, Erik made some comments under his breath about one of his favorite television shows. As it turns out, Dr. Brent does look an awful lot like Steve, the original host of Blue's Clues. He just needs that fruity striped shirt.

The hygienist was able to take Erik up and down in the chair, and he is now an expert at operating the plastic suction tube (or, as I call it, the little "vacuum"). He used this device on Stinky-Dog's snout and laughed maniacally.

Although Erik stayed in the chair and remained fairly calm, he was obviously annoyed by being touched by the staff. Getting Erik to open his mouth is still almost impossible without prying it open with torturous dental devices, but they gave it the old college try. He was eventually distracted by the ominous noises coming from the next chair and became limp and semi-compliant due to his anxiety. Because of this, Dr. Brent was able to get a better look at Erik's bottom teeth. He then asked me if Erik had chocolate for breakfast.

Uh oh. Not a good sign.

We have two more "happy visits" scheduled for the next month to try to get a better look at the suspicious tooth. The dentist was unable to see much of Erik's top teeth at all. He very gently mentioned the "S" word to me.

Sedation.

I have more research to do on this topic about what is required in a dental setting, but I would be lying if I said this didn't scare the dickens out of me. I was barely okay with it when he was in a cardiologist's office surrounded by crash carts.

I allowed Erik to play with the toys in the waiting room for a few minutes on the way out and tried to shake off the curious stares I received from the other father who was at the next station in the examination area. I have to laugh because we make a complete scene at each and every appointment in offices all over town. Erik is always behind the desk helping schedule his own appointment, rolling on the floor trying to get a better look at the wheels on clinical chairs and tables (and asking where the lugnuts are), or singing songs in his own language at the top of his lungs. And he doesn't open his mouth at all without making some sort of loud sound. When they ask him to open it wider, his volume just goes up. Erik also cracks everybody up with his quips, Stinky-Dog voice, and reactions to things. I am quite confident that nobody will ever forget us.

And if they do, we'll be back for another round in two weeks!

Go Tori! Disability Awareness Day 2009

2009-07-31T19:35:00.000-07:00

Save That Date!

2009-07-29T15:13:00.002-07:00

I am planning my first WSA Northwest Region event here in town on Saturday, October 24, 2009. I have a room reserved at a local restaurant for a casual dinner and fun. You can e-mail me for details or keep your eyes peeled for a mailer.

I have also started the process of planning an annual fundraiser here for Erik's future and to give to the WSA. So far, it's either a golf tournament or a 5K. With the help of my fabulous friends and their connections, it will be difficult to decide which path to take, but I'm excited about the possibilities!

Hope to see many of you in October.

Another Brick in the Wall

2009-07-24T20:13:00.000-07:00

I'm having a pretty serious bout of depression again. As I have written before, it cycles in and out of my life. I can usually feel it coming. It always passes, but it takes a little time. It seems to be mostly endogenous, not really a direct result of what's going on in my life at the moment, although certain situations can intensify things. I have barely been able to function for the last few days. I can't concentrate, and my child is becoming bored due to my recent lack of creativity, despite my attempt at outings to see friends or to play at the park. I have been trying to hold on this week, knowing Erik will attend vacation Bible school Monday. The heat is not helping me at all. After the coolness of morning is absorbed by the dry, heated air of the day, I'm spent.

Today I looked over at Erik and told him that we were going out for a while on an "adventure" to the store. I apologized to him for my lack of motivation and the fact I hadn't been a very good mother for the past couple of days. Truthfully, he hasn't seemed to really absorb much of what I say out loud in the past. Besides, I talk to myself quite often, and he has (understandably) learned to tune me out at times. In this case, I wasn't really expecting an answer at all.

He stopped in his tracks, turned to look at me, and smiled sweetly.

He said, "No, you are a good mom!"

He crawled up in my lap and cuddled with me. My eyes watered. It seemed like such a strange thing to say in the middle of his odd, made-up game he was intent on playing alone. In fact, his statement sounded foreign to me with the perfect intonation an adult would tend to use. He seemed to be channeling someone else, as I sometimes suspect he does.

He then looked up at me and said, "Hey, Mom, I have to go potty."

I almost fell over.

"Really?"

He answered that he did. He has never told me this before. He followed me to the bathroom and allowed me to assist him without any fuss at all. I sat on the edge of the bathtub next to him and continued chatting with him as he successfully used the toilet. I tried to contain my excitement.

I said, "Yeah, I do love you an awful lot. I try to take really good care of you."

He smiled and replied, "Yeah. You take care of me when I am spitting orange."

Again, I was amazed. The first time he remembers throwing up was after he had eaten some segments of an orange, which came up all over his hands and the toy truck he was holding at the time. Therefore, he refers to vomiting as "spitting orange." He also apparently remembers that I was there holding him while he was violently ill, stroking his hair and putting my cheek against his clammy forehead. The way he smiled telling me this made it appear as if he were relating a fond memory of a vacation or a visit to a dear relative, not violently upchucking the contents of his stomach. Strangely, it seemed to be a pleasant memory for him.

On days like today, a brick in that awful, dark wall between us crumbles without warning, and one more shaft of sunlight spikes into my world. I live for moments like this, and it seems they come when I need them the most.

Erik seems to see and hear things other children don't. These strange things in his own world interfere with what he would typically understand or learn. However, what's important is that there is no longer any doubt in my mind that he remembers all of the little things I do for him because I love him.

And that he loves me right back.

Weighty

2009-07-24T07:18:00.000-07:00

Erik is now approximately 38.7 pounds. He let Brian weigh him on our bathroom scale for the first time.

Children's Festival 2009

2009-07-19T21:19:00.000-07:00

Some ladies in my support group invited me to join them at the park for a children's festival last weekend. The outing itself was a mixed bag in terms of success. I was in an unusually emotional state, and constantly having to corral my hyperactive child who seemed completely unable to follow instructions at times quickly took a toll on me. While I definitely enjoyed the company of my very understanding friends and the activities we managed to do with the help of the wonderful volunteers, I still burst into a big, ugly cry when I got home. Maybe it was because it was such a big deal to do something like this on my own. Maybe I was simply overheated, sweaty, and tired. Perhaps feeling everything for once in front of God and everyone was just a really intense experience. I was frightened because I could just barely physically handle my child and keep my frustration in check. I had just enough strength to get through it, but in the end, I just had nothing left.

What took me by surprise was that being on an outing in the presence of these particular mothers seemed to substantially thin the layer of numbness I normally protect myself with, so my defenses weren't as effective as they usually are. At times it was like having open heart surgery without the benefit of an anesthetic. While it was wonderful to feel the ups and downs of being out, the thought of feeling so vulnerable frightened me as our little group made our way from booth to booth. One of my new friends seemed to read my mind and reminded me to tell her if there was anything I needed as we made our way through the celebration. Erik and I were invited to share some crepes the size of Nebraska with my other friend. Her daughter, who is largely nonverbal, looked into her eyes and very clearly expressed her feelings about Erik, followed by one of her brightest smiles. And the feeling was obviously mutual. Erik looked thrilled and laughed that hearty, open-mouthed laugh of his. Pure joy. Being in the presence of two very lovely ladies is a dream come true for my son.

Erik discovered that many of the booths were trailers, which meant they had wheels affixed to them. The couple working inside the snowcone booth stared as Erik caressed their tires for an extended period of time while I stood nearby and very unsuccessfully attempted to look casual. The silence was deafening, and I didn't really know what to say, so I cracked jokes about inspecting things to ensure that vehicle met safety standards. They laughed. After their initial skepticism about us seemed to wane, they allowed Erik to walk behind the thing where they were storing supplies to check out the back tires. I concluded that keeping Erik still and out of people's way was a completely lost cause. I shrugged, laughed, and made small talk with them until Erik began mumbling about lugnuts and moved on to the next booth with wheels. By now, we were looking more than a little strange. Mr. Snowcone stepped out of his cart during a lull in business and stood next to me, watching Erik press his lips to each wheel. He asked me with complete sincerity how long it took us to cross a parking lot.

From there, I laughed myself sick when we crammed ourselves on a rickshaw-type bicycle contraption for a ride around the park. One of my friends volunteered to run along the side of the thing and snap photos, and my face soon ached from smiling. She sprinted after us, waving and cheering, fueled by her wonderful enthusiasm, which was enhanced by the consumption of a little cotton candy. We eventually gained speed and left her behind, but she popped out from behind a tree like a paparazzo on our way back towards the festival.

Erik began to exhibit signs of an impending meltdown soon after our ride, as he was oversaturated with stimulation, and I carried him a short distance out of the crowd as he began throwing a fit. He quickly shook his head from side to side and began to cry. My arms were full of promotional items and prizes, including a rather large stuffed rabbit, but I made it back to the Jeep without losing much. Erik was furious at me but calmed down during our ride home and admitted he had a great time.

In the end, being included in something like this is pretty awesome. Feeling unsure about yourself as a parent and being scrutinized by the outside world, not knowing how to react to the queries of strangers, is so much more bearable when friends who know what you are going through are at your side. I suppose that holds true no matter who your kid is or how many genes he happens to have.

Connections

2009-07-19T16:46:00.001-07:00

I just e-mailed our regional WSA chairperson and offered to host an event in our state for WS families. Washington is just too far for us to travel for our region's annual family picnic, so this year I felt inspired (a complete surprise to me) and decided to do something about it.

Anybody interested?

As far as I know, Erik is the only child in town these days with WS. Hmmm. What if I threw a party and nobody came?

Ah, heck. You never know until you try. We'll see what happens. I'll just make some two-sided banners. If nobody shows up, I'll flip them over and instantly change the party's theme.

Spontaneous seems to be my middle name these days.

Lugnuts N Such

2009-07-16T19:31:00.000-07:00

My sleepy, heavy summer drones on. I am having fun here and there, but I am more than a little cranky because of the heat and the lack of a strict schedule. I am trying to remind myself I would have killed for this a few years ago! Erik is tolerating my ever lengthening workouts in the morning beautifully, and we have set our own pace. While I don't feel like I'm doing much of anything, we seem to be doing the same sort of nothing on the same schedule every day and accomplishing things in the process.

Erik's current obsessions:

1. Lugnuts
2. Things that are broken (and asking 1200 times if they are)
3. Vacuum cleaners
4. Sirens/fire trucks/fire alarms (good during the day but terrifying at night)

Yes, he is STILL asking whether or not the Jeep will start and puts his hands over his ears. His obsessions/fears are becoming more interesting to me because of his ever increasing language skills. He can now have a converastion with me about them. While the reasons for each obession remain completely mysterious, I can now ask him questions about the objects he fixates on to try to gain some insight. As the grief recedes, my fascination increases regarding how my son's brain works. He is an amazing little soul.

My current obsessions:

1. Canadian whiskey
2. Daily exercise
3. Grilling
4. Reality television
5. My Aerogarden (now with 45 different types of lettuce)

In regard to number three, I'm a Daddy's Girl for sure. In honor of this, I will share my latest tried and true recipe for you. Brian and I both gave it the thumbs up.

GRILLED FLANK STEAK SOFT TACOS WITH AVOCADO-LIME SALSA

STEAK:

1 Tbsp chili powder
2 tsp grated lime rind
1/2 tsp salt
1/2 tsp chipotle chile powder
1/4 tsp freshly ground black pepper
1 (1-lb) flank steak, trimmed
Cooking spray

SALSA:

1 cup diced peeled avocado
3/4 cup finely chopped tomato
1/3 cup finely chopped Vidalia or other sweet onion
1/4 cup chopped fresh cilantro
1/2 tsp grated lime rind
2 Tbsp fresh lime juice
1/4 tsp salt
1/4 tsp hot pepper sauce (such as Tabasco)

REMAINING INGREDIENTS:

8 (6-inch) corn tortillas
2 cups very thinly sliced green cabbage

To prepare steak, combine first 5 ingredients in a small bowl. Score a diamond pattern on both sides of steak. Rub chili powder mixture evenly over steak. Cover and chill 1 hour.

Prepare grill to medium-high heat.

Place steak on a grill rack coated with cooking spray; grill 8 minutes on each side or until desired degree of doneness. Remove from heat; let stand 10 minutes. Cut steak diagonally across grain into thin slices.

To prepare salsa, combine avocado and next 7 ingredients (through pepper sauce) in a medium bowl.

Warm tortillas according to package directions. Top each taco with 1/4 cup salsa and 1/4 cup cabbage.

Yield: 4 servings (serving size 2 tacos)

CALORIES: 353
FAT: 16 g
FIBER: 6.8 g

(8 Weight Watchers points -- I also added 2 Tbsp of fat-free sour cream, which is free)

Avery Update

2009-07-13T20:00:00.000-07:00

My friend Amy has informed us that her daughter Avery will be undergoing surgery for implantation of a pacemaker at 7:15 EST tomorrow after an already extended stay in the hospital for gastrointestinal surgery.

Saltwater

2009-07-13T05:06:00.000-07:00

Most of the trips we take these days are definitely not a result of our spontaneous desire to get in the car and go. We would probably never leave the house if we didn't receive invitations from our friends and family members to travel with them. I am coming to realize how important it is to say yes to these opportunities, even though we don't know how Erik will eat/sleep/cope with a change in scenery. What parent knows for sure how their kid will react to something new, anyway?

Friday we headed to the beach to meet my friend and her family. On the way, we stopped at Brian's parents' house for a quick visit. We had a beautiful lunch by their manmade waterfall and pond. Erik was encouraged to feed the koi, some of which have grown to the size of salmon in their roomy habitat. Their white, gold, and orange scales glistened in the sun but failed to really capture Erik's attention. Instead, he wanted to kick at the neat layer of pea gravel or run unfettered under the trees. Brian and I traded off the sweaty duty of chasing after him to prevent him from tripping and falling head first into the pond with the fish or destroying flowerbeds. Erik did stop moving long enough to devour an alarming amount of fruit and homemade muffins.

After lunch we said goodbye and drove across one more mountain range to the coast. We wouldn't see the sun for the rest of the weekend, but the air was fairly warm and pleasant. We located the beach house my friend had rented in a housing development striped with wide, soft drifts of sand. Rows of ranch-style houses surrounded by more sand and beach grass lined the streets, most of which were empty and/or for sale, but a few families milled about in driveways around vehicles bulging with suitcases and beach accessories.

Our two-bedroom, two-bath house was relatively new and full of soft light with an open kitchen. The guys set up two small barbecues in front of the open garage door, and oysters and slabs of steak were grilled for dinner. Shaena and I baked chicken breasts in the oven and fed the kids hot dogs and pasta. By the end of the day, Erik had briefly cried himself to sleep in his bunk in our room, and his friend Samantha had retired to her toddler mattress on the floor of her parents' room. We all poured ourselves cocktails and relaxed. The guys retired to the family room in front of the television/stereo, and Shaena and I found ourselves in chairs on the front deck underneath a relatively rare coastal lightning storm playing across the sky. We talked and drank until we were exhausted and could no longer keep our eyes open.

We tackled touring the aquarium up the highway the next morning. Erik seemed only slightly interested in the exhibits. He did enjoy the creatures that were available to touch. The place was crowded with strollers and noisy children, however, and it was soon apparent he was completely overstimulated, a phenomenon I assumed was history at his age. Brian finally resorted to carrying all 38 pounds of boy on his shoulders, something we do when Erik refuses to walk any further and begins completely melting down. We hastily found the exhibits we wanted to see, briefly separating from our friends and texting each other our locations, finally meeting up in large, plastic tubes surrounded by saltwater and marine life, including sharks. By now, Brian and I were both on edge, as Erik was in a full, defiant meltdown. He whined and whimpered. He refused to walk on his own. His limbs flailed spasmodically. He yanked on our arms and refused to hold our hands.

Against my better judgment, we drove on to lunch on the waterfront. Tourists crammed themselves in shops full of gifts and candy. One of the oldest, most popular restaurants we love had a long line snaking along the front. We decided to attempt waiting for a seat, which would take approximately 20 minutes. We stood on the sidewalk in front of the tiny restaurant with strangers for nearly half an hour. Erik found one woman with spiky, bright blond hair and an easy smile unusually irresistible, and she allowed him to hold her hand. Finally, we were led into the tiny, bustling dining room and seated at a long table in the middle of the crowd. I ordered a bay shrimp sandwich with an ice-cold beer for myself and a grilled cheese with apple juice for Erik. He devoured nearly the entire sandwich with gusto. We ended up having a really nice lunch before heading back to the house. As Erik had reached his limit long before lunch, we decided the brewery we thought about visiting was a no-go.

Erik's friend Sammy invited him to watch videos with her from time to time on the leather couch in the family room of our beach house. He really took a liking to the Pixar feature called Cars. He did very well inside the house or playing with sand on the deck without the extra stimulation of strangers and unexpected noise. He interacted with Sammy in new ways and was able to converse with her a little more than he had in the past. Brian took him to the beach, which apparently went well until it was time to go. When I met up with them on my way to the ocean after a trip to the grocery store, Erik was walking down the street with Brian. His toes were bleeding very characteristically from the beating of being exposed, and he was blubbering. He told me very dramatically that he loved me, and I had to giggle. His clothing and coat were soaked with seawater and covered in a thin layer of wet sand. Through his exhausted fit, I could tell he had loved every second of what he had just done. He had apparently splashed in the chilly water thigh deep and fallen at times, explaining his condition. He absolutely loved it. I spent a little time on the beach myself, feeling the sand erode under my soles as the waves rushed back into the ocean and felt my toes begin to lose feeling in the frigid water. I stood still, feeling the power of the ocean vibrate every cell in my body. I guess I had a little word or two with God while I was standing there, too.

Sunday we packed our things and vacated the house, which seemed to be hard for all of us to do. We drove to the valley and met at Wendy's for lunch, where Erik began the familiar signs of nuclear meltdown yet again when a family with noisy children seated themselves directly behind us. He put his head in my lap and covered his ears. His feet kicked. Finally, I asked him if he wanted to go for a walk. He said yes, and we amused ourselves in the parking lot next door in front of a Chinese restaurant, a Mexican bakery, and a dark barbershop. Erik walked atop the parking curbs, sometimes requiring my help to maintain his balance but becoming annoyed when I tried to help him. When everyone else exited the restaurant and it was time to go, he had another major malfunction. He stopped short of sitting down, but his legs became heavy and extra clumsy. He burst into tears. He yanked roughly on my hand when I tried to move him along. Losing my temper, I snapped at him with a raised, impatient voice. He cried even harder.

I got us both into the Jeep and felt my emotions seep through the exhaustion that comes with packing and traveling. Tears rolled down my face silently for a minute or two, and Brian patted my knee. I was tempted to give up and go home without our scheduled trip to the amusement park at this point, but we finally decided to press on.

Up the interstate we went.

I finally spotted the large sign in front of the familiar theme park, a place I have not been to since I was small. We parked in front of a castle wall and joined our friends. Erik seemed excited and held Sammy's hand. The guys paid our admission and tickets for the rides inside the park, our optimism bleeding through once again. My sense of humor spurred me on as I read the rules that were posted on a Medieval-looking sign at the start of the trail and added my own. No outside food or drink. No toplessness. No pooping in the moat. Shaena and I giggled ourselves silly.

We followed the trail into the darkness of the park under a gorgeous, green canopy of foliage. Brightly painted concrete buildings illustrated assorted fairy tales. I entered the ones that would accommodate my adult body, peeking through windows at ancient exhibits that sparked memories I thought were lost. The audio portions of many of the featured tales were garbled beyond recognition, even for my transcriptionist's ears, but the tales were easily recognizable. Erik reluctantly entered a large rabbit hole with his father, who was on all fours, and Shaena and I ran ahead, looking for the place where they would emerge.

By the time we had come to the portion of the park featuring rides, Erik was melting down yet again. He entered a wooden door labeled "saloon" in the Wild West section. Inside was a straight, dark hall, and the floor was soft and unstable, designed to make you feel like you were intoxicated. He ran back and forth, almost frantic. He began making the incessant engine noises he makes when he is in full freakout mode. Sammy was across the narrow street, patiently allowing a man who looked like Abe Lincoln to put period clothing over her own outfit for a photo opportunity. Brian wondered aloud if Erik would hold still long enough to do the same. We quickly came to the conclusion that he would not. Instead, we watched and let our kid run back and forth.

All six of us stood in line on wooden stairs for the little roller coaster in the trees, which would be Erik's first. It had been constructed in the late 1980s and was intended to look and feel as if its riders are in bobsleds. Shaena and I decided to ride together. We crammed ourselves in one capsule with Shaena sitting between my outstretched legs and me with my chin resting on her shoulder. An opaque plastic cover with large holes in it was snapped down over our heads. I couldn't help but think of Jim Carrey and Jeff Daniels on that moped in a scene from the movie Dumb and Dumber. She began discussing the sign she had happened to read about getting splashed with water on this ride and how interesting it was that I had chosen the seat in the back. I began giggling, wondering if I could possibly survive this experience without wetting my pants. The ride jerked to a start and we began screaming immediately, despite the fact our car had just begun to move. I was thankful Erik's car was in front, away from our gleeful hollering. We gained speed and rocketed through the forest for two and a half minutes, our screaming gaining new volume with every violent turn. When we all escaped at the end and made our way down another flight of wooden stairs, my knees were actually a little shaky. Brian reported that Erik emitted a "YEE HAW" or two but that he quieted down as the ride progressed. However, he protested and thew a fit as we walked away from the attraction. His defiance would only intensify. We came across a tiny Ferris wheel and debated on whether or not to trap Sammy in a cage with Erik on the thing. Brian wondered aloud regarding the worst thing that could happen, and we all laughed. Erik refused to ride, however, still upset about leaving the roller coaster and mumbling about the promise we had made about him seeing a train. We kept going until we saw the psychedelic-looking kiddie train, its lights merrily flashing in the rain. Erik agreed to ride with Sammy. Shaena and I took shelter from the weather by the bumper cars, where we could watch and snap photos. Erik and Sammy were seated in the first car shaped like the train's engine and patiently waited as other children found their way to their seats. Brian yelled over the fence to the kids to push the illuminated button in the dash, and when they did, various animal and train noises blared from speakers. Erik covered his ears but was interested. The ride finally began. Lights flashed, and the cars rocked gently as the train went a few times around an area decorated with giant toadstools and tiny village scenes.

When this was over, we gave our remaining tickets to our friends, and Brian carried a now hysterical Erik out of the park through the rain. I used Ye Olde Restroom on the way to the parking lot one more time and we found our Jeep. I was kicking myself for forgetting the cord to Erik's DVD player, a device we never seem to really need until the trip home. We listened to music for a while, but Erik finally snapped at me to turn it off. Erik never really falls asleep in the car, but he finally lost consciousness, surprising us, and the ride over the mountains was fairly pleasant. We feasted on coastal fudge and salt water taffy until I felt happy and more than a little sick.

In the end, the trip was enjoyable, but I wouldn't say we had time to completely relax. I was on edge a lot of the time. I told my friend that trying things with Erik is scary but always rewarding in some sense. Even a day afterwards the memory of the disastrous diaper blowout in the driveway and the tantrums are fading. After all, we will never know what will work and what won't if we don't make an attempt. Would I do it again? Of course.

There is, however, always a price to pay.

More to Come

2009-07-09T18:16:00.001-07:00

We are on the way to a new adventure, and I plan on posting stories/photos next week. I'm sorry my posts have been few and far between lately. I even have a video I need to post but haven't gotten around to doing so. It has been an emotional few weeks for me for a variety of reasons. Looking back at my last posts, I am alarmed to see what I have written. Not for my sake, necessarily, but for my friends and family. I have always refused to be anything but honest here, however, and I do nothing but continue to write what comes to me.

Erik has been cracking me up lately. Today I was unstrapping him from his seat in the Jeep in our driveway when he spotted the last three pretzels I had placed in his cup holder for on-the-go snacking during our errand running.

He said, "You know what, Mom? I'm going to take these home."

He gathered them up in his hand and took them inside the house, being careful not to drop them during the process. He has such a delightful, unusual way of expressing himself which is textbook WS. It's one of the millions of things I love about him. Frankly, it's one of the parts of WS that I completely adore. I am finding myself appreciating the uniqueness that comes with this diagnosis. There is a lot to love that isn't very apparent at the beginning of this story that is now revealing itself to me.

Oh, and did I mention today that he used the toilet in a big way this morning?

Hal-Lay-Lu-Yah.

The Water's Fine

2009-07-03T06:29:00.000-07:00

Confession

2009-07-01T16:54:00.000-07:00

The supermarket checker looked over the top of her thick glasses at me, smug and condescending. One corner of her mouth turned up in an amused snarl. I felt my mouth open slightly in disbelief as the voices in my head began fighting for control over what would happen next. Her words suddenly faded into a wave of hissing static, and the sharp stinging from this normally mundane, unpleasant transaction in my already aching heart faded beneath my ever present layer of protective numbness. Her tiny, gym-perfect body suddenly seemed weak, and, strangely, she seemed to shrink slightly before my eyes. I suddenly felt large, dangerous, and powerful. Enraged. One word reverberated in my brain.

ENOUGH.

I fought the urge to leap over the counter and forcibly push my knuckles into her face. While I have actually only needed to use force on a couple of occasions to defend myself in the past, I have never technically fought a human being and would normally avoid it at all costs. Quite honestly, I couldn't tell you exactly what this woman even said to me, but it didn't matter anymore. It was plain rude and just happened to be the very last straw for me. She was the lucky winner in the last of a string of horrible days in my life.

I turned to my left and marched to the nearest aisle, abandoning my open purse, a short stack of coupons, and a cluster of keys on the translucent counter top protecting a display of brightly colored lottery tickets. I reached past the products on the shelves, knocking a few over in the process, and pushed my outstretched arms together to clumsily embrace groups of bottles and small boxes, pulling them roughly towards me and letting them tip over onto the unnaturally glossy grocery store floor. I jerked a glass bottle of vinegar from a bottom shelf, uncapped it, and tipped it sideways, allowing its contents to glug in rude spurts onto the floor, forming an acidic lake. When this was done, I released the bottle and heard it collide with the floor. On top of that, I pulled bags of flour, boxes of cornstarch, and bottles of vanilla. I had created an amazing mix beneath my feet. An odoriferous, foaming, angry stew. I had crated total destruction in such a normally peaceful, orderly setting.

God, it felt good.

I could feel my chest fill with a fiery burn as a seemingly endless scream emptied my lungs of air. I felt as if I were drowning, and my head was swimming. Strangely, I could barely hear myself. I growled. I grunted. I made noises only animals should make. The crazier I appeared to the wide-eyed checker (whose smug look was now only a distant memory), the better.

I hurled containers using every last bit of the strength in my arms, and shards of glass sparkled merrily in the air before settling onto the floor. Everything seemed to fall in slow motion. My feet crunched through the mess as I progressed, frantically pulling more items to fall to a disastrous demise. I knew it was only a matter of time before I would feel the bite of a stun gun or the viselike grip of a man's arms encased in a black uniform tightening around me from behind, so I began moving at superhuman speed. Molten rage bubbled up from inside of me. I was full of old, unstable fuel, and something had sparked it. I was tired of smiling politely. Tired of pretending everything was fine. Tired of holding everything together. Tired of attempting perfect. I wanted nothing more than to crash and burn like a fiery comet in front of the world so that I would never have to worry about whispers or speculation or doubt from others again. I would never have the threat of imminent failure hanging above my head like a storm cloud, trailing me day after day like a faithful pet. I was tired of hiding my weakness. Tired of the secrets I was required to keep because they made the world uncomfortable. Heaven forbid I make anybody uncomfortable. In one eruption, I felt nothing but pure, joyous relief.

So this is the dream I had last night.

I actually woke up with tears in my eyes. My chest ached, and I was still really angry. What this means exactly I do not know for sure. Perhaps there is a part of me that desperately wants to tell the world about the part of me that is still really angry and disappointed to this day. About what a failure as a mother and a human being I really am so there is no longer any doubt. About how I will never be the woman or mother I dreamed of being and how much that hurts. Instead, I can only do my best and hope that it's enough. Being a perfectionist can really be a bitch sometimes.

I honestly think that I have accepted what has happened to me as a woman and a mother over the years. I have no choice. What is done is done. Accomplishing this is not a pretty process, but I have generally been successful. I am light years away from where I was when I started this blog. However, expecting to be completely okay with some things is pretty fucking ridiculous.

There are some things that will never really be okay with me. No matter what.

I am doing generally well, but I am not okay. I never will be completely "okay," although I lie about this all of the time. There are some days I want to scream at strangers. To confess my deepest thoughts and unburden my heart, but we don't do that in polite society. It's not acceptable to fail or to even hurt. We are prescribed pills to make these unpleasant things go away. And it makes people uncomfortable if a person is completely honest.

I am not brave, amazing, or any of the other kind adjectives people tend to use when they describe a mother like me. The truth is, I pretend I'm strong and hope that I will believe it someday, which actually works here and there. On many days something tiny and unexpected reminds me of what a failure I was to successfully produce a baby with all of the correct components. To even desire another baby like a normal woman should. To get through a day without snapping at people. To take care of myself the way I should. Each and every day I try the best I can. It's all I can do. The strength I do have comes solely from the endless, incredible love I have for my beautiful son who loves me despite my weakness and imperfections. Ironically, on most days, I see absolutely none of his defects and all of mine. My anger has never been directed at God. I am extremely thankful for what I have and make no secret about that. In fact, I think these days God and I have come to a pretty successful understanding of each other. He knows me better than anyone, and there's no hiding anything from him, anyway. I figure that if I make him uncomfortable, then I'm in a world of trouble.

The truth is that deep inside of me is an ember that shows no signs of extinguishing. While I can douse the fire on the surface, there sometimes remains a white-hot briquette of disappointment, despair, and rage that comes to the surface for a week or two here and there. With each passing year, it gets buried in the day to day stuff. Work, dishes, laundry, trips to school, and grocery store outings. I forget about it, but it emerges in my thoughts or even sometimes in the casual words I speak. Sometimes I sound bitter. I hate that. Sometimes it takes me by surprise in dreams.

In my writing and in my dreams I can throw things. Rage. Confess all. All while putting up a brave front during my waking hours.

I thank God for that.

Come On

2009-06-30T09:52:00.001-07:00

Here is a song I happened to stumble upon regarding inclusion. It has a Jack Johnson feel to it and completely brightened my day, so I thought I would share it with you.

Come On - Anchorage, AK, United States, 99508 - Fan Community Audio track - Be a part of it!

Not-So-Random Acts of Kindness

2009-06-26T06:41:00.000-07:00

I was sitting at my desk yesterday when I saw the UPS truck rocket down the road, trailing a cloud of dry desert dust. I haven't ordered a thing, so I was surprised to see it rattle to a stop in front of our house. The box the driver left on the porch was addressed to Erik. Well, that explains it (not). I wonder what Erik would order if he could. Cookies? Puppies? A box full of wheels?

When Erik got up from his nap, he spotted the box and asked who brought it. I explained that the UPS man did but that I didn't know who sent it. He seemed to understand. I sliced open the tape with a nearby steak knife and opened the cardboard flaps. Inside the box was the cutest little boombox ever. You can even hook it to an iPod, which I had not seen before. There was no information regarding who sent this gift whatsoever.

Erik was suspicious but curious. He asked what kind of noises it would make. I reassured him that it would only make good noises and that I would never need to punch the thing to get it to start, although I crossed my fingers when I plugged it in and inserted a Sesame Street CD, hoping for the best. As it turned out, it's even more quiet than the other one was when it searches for the first track. Even that subtle sound bothers the Mighty Erik Quinn.

So, thank you from the bottom of my blackened heart, mysterious blog reader. I am having a really tough week, and you completely made my entire month. There is music in Erik's room again, thanks to you!

Slosh

2009-06-19T05:35:00.001-07:00

Those who do not know how to weep with their whole heart don't know how to laugh either. -- Golda Meir

Tonight I sit here with tears streaming down my face. It has been a rewarding day, but it didn't end well, and I'm just too raw to keep my emotions inside. A child in the WS community died this week, which always throws me off balance for an undetermined amount of time, Erik is having his awful stomach problems while I am trying to toilet train him, and I am not adjusting to the lull of summer very gracefully. I feel like I live a perfectly happy and successful life but that I am required to do it with an ruthless, ongoing intensity that places my emotions just beneath the surface. That's where the numbness I have mentioned keeps things in check. I have learned to keep this hidden and even fool myself into thinking the lake of sloppy emotion isn't threatening to spill at any time, but it sometimes sloshes and takes me by complete surprise.

Today I took Erik to pick up lunch at Subway. As we waited for his sandwich to be made, the overhead speakers began to thump with the 1986 OMD song "If You Leave." One of my favorites. I grabbed Erik's hands and danced with him in line, swaying back and forth with the music. The women preparing Erik's food were charmed by his smiling face underneath the brim of his baseball cap, and we danced our way to the front of the line, where we accepted a small plastic bag containing Erik's meal. We then made our way out into the blinding sunlight.

We arrived at our local playground just as the school district began serving free lunches to children in need. I gripped the steering wheel, squinted at the melee, and sighed. This meant the park was clogged with children. Lines of parents stretched out in front of two stainless steel refrigerators on wheels at the edge of the playground. In the past, I would have turned around, but I had previously made a promise to Erik about going to this particular park. I have nearly forgotten the days of cruising parks in town to find ones without children playing in them because of Erik's sensitive hearing. Those days are gone. Miraculously, a parking space opened up before us, and I had our things unloaded in no time.

In our community, the senior center abuts a large playground full of children. This is brilliant, if you ask me, as different generations can mingle together. Erik and I walked away from the chaos and chose a quiet, shaded picnic table toward the senior center. A gray-haired man rudely and enthusiastically revved the engine of a brand new Ford Mustang with racing stripes in the parking lot, and the people walking out of the building laughed. Erik looked up at the shelter we sat under to shade us from the sun in amazement. He said, "Oh wow. This is a nice house."

We were soon joined by another elderly couple at the next table. She opened a pack and spread out a red and white checked tablecloth. On it she placed fancy wine goblets, fat sandwiches encased in plastic wrap, and a miniature bottle of wine.

A pair of frail-looking women tottered down the sidewalk towards our area. They seemed to be holding onto each other for dear life. They chose another nearby table and opened another pack containing food, including half cans of A&W root beer and goldfish crackers. Erik grinned at them all, muttering the nonsense phrases he considers charming but that nobody else can come close to understanding. Sometimes I wonder if he slurs these made-up things just enough that people find themselves leaning closer to him. It wouldn't surprise me.

One of the women was very chatty. We consumed our meals, and I enjoyed her questions and comments, some of which made me laugh ("What's the deal with that vitamin water they are selling, anyway?"). When we were finished, I helped Erik dismount the awkward bench of the heavy picnic table, and I asked him to say goodbye to our companions, which he did. I threw our garbage in a tall, round can nearby, and Erik stood on his toes to try to spot where it all went. I had to pry him from it in order to begin our trip back up the sidewalk to where a sea of kids churned all over the play equipment.

Erik asked to try the slide for babies. The playground is divided into three areas appropriate for different age groups. We started with the area for young children and worked our way up successfully for the first time with no protests from Erik. He climbed over each structure completely independently while I sat soaking up sun through a layer of SPF 45 moisturizer nearby.

This is a major accomplishment for us both.

At the final play area featuring a maze of bridges, elevated walkways, and one steep slide, a group of seemingly gigantic, obnoxious boys camped underneath Erik's favorite rock climbing wall and screeched, playing some made-up game, hurling insults at each other, and occasionally accidentally kicking each other in the face, much to my delight. I could not even begin to accurately guess their ages. A large boy rode a skateboard down the slide, making the massive structure shake. Two small children glided by on scooters. Erik began to lurch for the wheels, and I said, "Erik! Not yours!" He looked at me with complete understanding and acceptance in his eyes and moved on to an elevated walkway over the soft playground surface. He gripped onto the railing with both hands and gingerly took step after sideways step, slowly making it all the way across the unfamiliar surface, simultaneously greeting the children who passed by. He then ascended a flight of stairs and found the top of the slide, sitting on his bottom and sliding back down to me.

My heart swelled with pride.

The boys' screeching only intensified. Erik's hands suddenly flew to his ears, and he stopped in his tracks, but he never once looked back at me. The children sprinted by him at their frenzied pace, and he simply stood still in the sunshine, looking like a frail creature from another planet observing another culture steeped in an inhospitable atmosphere. I quickly climbed up the structure and stood behind him, placing my palm over his chest to assure him I was there, although he didn't really need it. If anything, I was the one who felt like an alien. I really wanted to touch him and feel anchored to the planet again. As I felt his heart beat under my hand, I winced at the familiar, brief stings of anger and despair before they faded deep under my ribs. The sudden, stabbing pain caused my eyes to water, but any tears dried before they could spill from behind the dark lenses of my glasses. And then things were fine again.

I said, "Wow, those kids are pretty darn loud."

Erik was in full agreement.

He then came out of his frozen stance and began to move again. Children approached him and asked him questions. When he didn't respond, they looked slightly confused but in the end didn't seem to care. I bridged the gap between them and asked Erik to attempt what they were doing on the play structure, making them feel important and easing Erik's anxiety in the process.

I'm no rookie anymore.

We ended the afternoon hand in hand walking back to the car. I asked questions about what we had seen, and Erik seemed satisfied. We agreed that we both had a great time.

Tonight I asked Erik if he wanted me to turn on his CD player to listen to music. For a couple of months now, he has been telling us no. I finally concluded that something wasn't right. I suggested some songs, and he finally agreed on a CD to play. I thought that it was odd a child, especially with WS, would not want music for this many days in a row. Erik adores music. He seems to feel it physically.

Erik's CD player is tired. I purchased it before he was born to put in his perfect nursery to play perfect lullabies to a perfect baby. It has never really worked very well, which, at this point, is no freaking surprise. I have to laugh about this. These days I have to do what my best friend calls "percussive maintenance" to get it to start. With a mere few taps using the soft side of my fist on one speaker, the music usually plays. I have done this many times.

I placed the CD in the thing and snapped the lid shut. The machine very quietly clicked and whirred, desperately trying to locate a track to play.

Nothing.

I began the rapping on it, listening for the sound of success. Instead, I heard a strange, frightened wail begin behind me. When I turned to look at Erik in his bed, his face was bright red, and tears were streaming down his cheeks. Where the skin on his scarlet face was creased, it was blanching pure white.

"No music, Mommy! Turn it off! I don't want it!"

He continued to beg me to make it stop, even though the music had begun and sounded fine. I felt like the worst mother in the world for ruining this thing that he formerly enjoyed so much in the safety of his room. How a child could survive an afternoon of the world's loudest, worst-behaved children at a playground and then shrink in terror at the sound of an electronic device whirring and my hand slapping against a piece of plastic was a mystery and caught me completely off guard. I frantically stabbed at the stop button before I ran to him and held him in my arms as he continued to cry. I promised I would throw the stupid CD player away and find him a new one as soon as I could. I told him that I was so very sorry. As I hugged him tight, the tears I had fought earlier finally spilled and streamed down my face. I hid them from Erik, but I could tell there would be many more, so I kissed him on the forehead and got up, tucking Stinky-Dog in his arms, which he was too upset to acknowledge. He seemed to be in a glassed-over, anxious trance. He was red faced, sweaty, and solemn when I shut his door for the night.

Life is good, but the intensity seems to follow me everywhere. And once in a while it turns me into a blubbering heap.

Rainbows

2009-06-12T05:47:00.000-07:00

The weather has been stormy. Each day brings thunder and lightning like I have never seen here before. Our gravel road is sinking under a large, muddy lake, and our lawn is soggy and turning a deep golf course green. Every time I step outside, small animals scurry out from underneath the boards of the porch, no matter how many times I try to tell them they are just fine where they are.

Yesterday there was a break in the clouds, and the sun emerged. Even the wind seemed to take a break. Erik and I hurried outside after lunch, shedding layers of the extra clothing I initially put us both in. He asked me to blow bubbles, which I did until I was dizzy from lack of oxygen. The bubbles floated in front of us in batches, gleaming in the sunshine, and then drifted straight up against a patch of bright blue sky. Finally, I got back up on the porch and settled into a chair. I set the bottle of bubbles down on the porch and watched Erik navigate the stairs up to get to where I was resting. Lately he has been crashing into everything, even without his leg braces on. He sometimes reminds me of a baby deer trying to stand. He is growing so quickly that he seems to be adjusting to his own frame yet again. At times, he will even topple over from a standing position.

He clomped over to my chair and kicked over the bottle of bubbles, despite the stand my father made to encase them and keep them upright. After changing dirty diapers all day because of his sensitive gut, I heard my voice take on a harsher tone. I explained to Erik that his bubbles were gone and that he needed to be more careful with his things. He quickly stooped down and tried to dip his bubble wand inside the bottle to assure me there was still some remaining, but there wasn't. I told him that when he accidentally made a mess, he should apologize and help clean up. He looked into my eyes and lifted one of his feet up into the air. He then brought the sole of his shoe down in the center of the slimy puddle, sending out a spray of greasy droplets. I shot up from where I was sitting, angrily hosed off the porch, and ushered him inside, stating that we were through. I couldn't decide which was worse -- not knowing what my child understood or witnessing the deliberate defiance I would have given my right arm for a mere three years ago. Both were beyond frustrating. There are some days when the little things make me completely exhausted.

About ten minutes passed, and Erik seemed to have entirely forgotten about the incident. He was happily sitting in front of the washing machine's plastic porthole, watching our towels tumble in the soapy water. As I made my way by him with a pile of dry laundry in the crook of my arm, I placed my free hand on top of his head and told him that I loved him. He turned his face up to me and smiled.

He said, "Mommy, I'm sorry I spilled."

I kneeled down and wrapped my arms around him, inhaling the familiar, warm scent of his hair. I thanked him and told him that it was okay. And for that moment, everything was really, truly okay.

Patience

2009-06-08T09:16:00.001-07:00

Don't worry, Mommy. Be patient.

-- Erik Quinn (June 5, 2009)

Erik is now allowing me to lead him to the bathroom and lift him up onto the toilet after he gets up some mornings. This occasionally requires me to sing, dance, and basically perform the world's dorkiest one-woman show, but the results are more than promising. If there's one thing I have learned about WS, it's that distraction is sometimes key while performing difficult tasks like this, as it wards off cranky fits. He has resisted the whole toilet training process with gusto up to this point.

He remains relatively passive in many activities of daily living, and this is no exception. His balance is not dependable, and his motor skills are lacking, making toileting extremely difficult for him. However, he will aim to avoid making a mess, flush the toilet once I lift him off of it, and place his hands in the sink to allow me to wash them. Strangely, he doesn't seem to understand how to perform the motion of rubbing both hands together to get them clean, although he moves his fingers around in the air a bit and attempts to go through the motions he knows he is supposed to do. No amount of coaxing, teaching, or encouragement seems to bring things like this into his realm of understanding, although I go through the motions I am expected to as a parent as well, hoping it will sink in. Only time seems to bring resolution to some of his most basic challenges.

In the meantime, I watch other children his age or younger use the bathroom completely independently, including easily manipulating their clothing. As the children around us grow, I realize how far we have yet to go.

I try not to let it get to me. I really do.

I am an expert at changing diapers now, as I have been doing this for almost five years. I would be lying, though, if I said that doing this isn't horribly depressing. It is for this reason that the little steps we take forward are very rewarding indeed. We will get there with time.

It all comes down to being patient.

Life As We Know It

2009-06-04T13:56:00.000-07:00

Today Erik accompanied me to the store. I shop without him during the school year, but now that preschool has concluded, he rode with me today. I forgot how much more interesting a public outing can be with one Mr. Erik Quinn.

When we arrived at the store's parking lot during lunch hour (I was already kicking myself), it was packed with impatient people trying to accomplish their errands in an hour or less. I took a deep breath and muttered to myself as I crammed Erik into the shopping cart. I threaded his rapidly expanding feet (now a size 10) through the holes designed for chubby baby appendages, and, miraculously, he settled down in the seat without upending the thing like a monster truck attacking a row of sedans. I exhaled a sigh of relief. Usually, if I run into anybody I know, Erik gets wide, scrutinous stares, as people perceive him as gigantic now, huge for his age. I suspect that at least half of this stems from the fact that he is crammed in shopping carts such as this and appears freakishly large, like an grotesquely swollen, middle-aged man dressed in an adult-sized diaper and sitting in a crib the size of a Buick at a carnival side show. The truth is, he is of average height on the typical growth chart. Also contributing to the effect is the fact he has inherited my long, clumsy legs, making him appear even taller. There is also not a lot of extra fat on my kid, despite the fact it seems he consumes his weight in peanut butter each and every day.

Erik is a big fan of the Sesame Street DVDs I purchased to keep him entertained while I work. He adores the characters I grew up knowing as a kid. His Mr. Hooper impression is dead on. As we rolled into the store today, he was channeling the deceased storekeeper, yelling, "David! David! I can't find my glasses! David! I can't see a thing without my glasses!" For a moment it seemed there was an irritated, elderly gentleman in my cart threatening to spurt phrases in Yiddish.

Like many children, Erik has yet to hone his skills of appropriately engaging strangers socially. However, his attempts seem different than those of most kids his age. While many children are shy, Erik shakes hands like a politician. He greets even the infantile ("Hello there, baby!") He smiles widely. And he sometimes shouts to get a passerby's attention. He has learned that his window of opportunity sometimes closes quickly as his shopping cart rolls by, so he shouts whatever comes to mind at that very moment to attract attention. This usually emerges in the form of engine sounds, "Yee haw!" or animal noises, especially the ones cats and dogs make. It makes for awkward moments sometimes, but I mostly flash a smile and move on, as I am used to this phenonmenon now. Four years ago, my formerly shy self would have been horrified.

Today was slightly different. He craned his neck to glimpse a couple of boys his age walking quietly beside their mother and yelled, "Hello girls!" The mother looked more than annoyed, and I kept rolling along, wincing slightly as we passed out of sight. From there, he transformed into a hot dog vendor, something he also likely picked up from Sesame Street, screaming, "Hot dogs! Get your hot dogs herrrrre! How 'bout a little saurkraut? Catsup?" The New York accent was perfect. It was as if I were listening to a recording of someone entirely different. He sounded like a 35-year-old man working a job in Yankee Stadium.

We spent an hour in the store filling our cart to the brim with groceries. Erik spotted things on the shelves of interest, like chocolate ("Oh, I looooooove chocolate!"), and giggling with delight at the photos of fluffy kittens on cans of cat food ("They're looking at me! I loooooooove little kittens!").

It was a real adventure, just as I had promised him.

After we had annoyed everyone behind us in the checkout line, as the man checking made a big, slow show of things especially for Erik's benefit, we headed home. To the west, the clouds formed gnarled, pearlescent columns lit by the sun that were so incredibly massive and bright you could hardly look at them. I asked Erik if he thought they were as beautiful as I did, and he said yes. To the east, the sky was as black as night. The clouds seemed to churn slowly, as if something was working behind them, and I told Erik the thunder would begin soon.

When we got home, I unpacked our things and made myself comfortable in the kitchen, my favorite place to be in the middle of the day. Erik devoured two waffles with strawberries and half of a peanut butter sandwich. The sky above our house began to emit deep rumbles, and I took a glass of wine, a candle, and Erik's toy semi truck out to the front porch. I stretched out on the chaise lounge while Erik rode his truck back and forth, laughing out loud he was so happy. A bolt of lightning snaked down from the sky over the desert, and Erik stopped in his tracks as the sound of thunder that followed seemed to spread behind the clouds above us. Slightly alarmed, he came to me quickly and put his hand on my knee. I put my palm over it and assured him that we were perfectly safe. I asked him if he thought the lightning was beautiful, and he said that it was. I heard the sound of hail pellets beginning to slam into the ground, and soon the yard was being peppered by dense balls of ice. I looked back at the open kitchen window and saw Gracie-Cat's round, furry face materialize, seeming to float behind the screen in the darkness. Her eyes were dilated to maximum diameter, infused with primitive fright. A thunder clap sounded, and she disappeared.

When the cold wind picked up and chilled the air, I collected our things and took Erik's hand to lead him back inside. He cried in protest, but I assured him we would do it all over again tomorrow.

Down

2009-06-01T11:39:00.000-07:00

I'm feeling discouraged today. Parks and rec called today and informed me that the art class I wanted was full but that there was one available at the same time as Erik's vacation Bible school. I am on a waiting list for another class but do not expect to get in. If I do, I won't have the support of my fellow special needs mother, which scares me more than a little bit. I don't think I'm ready for braving our first tiny attempt at mainstreaming on my own. Yeah, it's just a stupid art class. But it's our first stupid art class with typical children outside the comfort of our special education bubble, and I know myself well enough to know how I will feel afterwards. It's a really big deal.

I should be thankful I had the guts to do something new and leave it at that. Tomorrow I plan on being thankful. Today I just feel discouraged.

Broken Record

2009-05-30T15:19:00.000-07:00

Sometimes I wonder how much Erik comprehends in terms of actions and consequences. Today I told him that if he got dressed, he could go outside, which is one of his favorite things to do. He was obviously very excited about this. However, when I asked him to come to me so we could begin the process of getting ready, he just gave me a sweet, slightly defiant smile and said that he didn't want to. He looked at me and stated he wanted to go outside. I explained that he could not go outside in his pajamas but that once he was dressed, we could do just that. He became instantly frustrated and told me no yet again. I attempted to remain calm and put his clothes back down, telling him that because he was not dressed, we would not be going outside.

A short time later, I decided to give him another chance, repeating the process with the exact same results. When I decided not to cave in and told him that my answer was still no and why, he followed this up with throwing a fit and then asking me one billion times if we could go outside, turning on the charm and hoping for different results. I repeatedly explained to him why it was we were not going outside until I felt like I was turning blue in the face. From there, upon the same question, I asked him if he understood why it was he was not getting what he wanted. He didn't really seem to have an answer. Brian listened to this whole conversation, and I wondered aloud how much of what I was saying was soaking into Erik's ears and brain. Brian's thought that some of it was but that Erik didn't seem to be able to help asking the same question over and over.

I had to agree.

Just how much understanding there is, however, remains unclear. While Erik is becoming quite talented at some things, he seems to be missing basic reasoning skills that other children seem to have that result in positive interactions and render discipline effective in any way. This is one of the many reasons we do not spank our child. I think it would prove to be confusing and hurtful to Erik without the proven ability to completely understand actions and consequences. I would always wonder if I did the right thing, as I could not determine how much he actually understood. For now, though, I continue to stand firm in my interactions with him, give time outs (which seem to break his heart at times), and hope that my explanations of actions and consequences sink in at some level to prepare him for the next situation.

The Gift of the Present

2009-05-23T06:10:00.000-07:00

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.

-- Buddha

Erik and I are making some serious progress these days in many ways. I hope that the people who come here, especially the quiet observers, can see the contrast between the past and present in my writing. At one point, I was actually living each hour at a time. Seriously. I'm not kidding. It was THAT bad.

When Erik first came home, I remember washing and folding his little baby clothes I received at my baby shower. Of course, most of them had to be set aside because he could only wear preemie sizes. The colorful outfits and ensembles I had unwrapped just had to wait. I had only one outfit that he could wear, so my mother sewed some little sleep gowns in cheerful fabric for him as well. I remember looking at the clothing in the next sizes up and wishing I could time travel to the point he would be wearing those little overalls and t-shirts. A time when he would be walking just before his first birthday. A time when I would feel like the mothers around me seemed to feel. A time when everything would be okay. Of course, things would turn out much differently. His diagnosis was still well over a year away. I hid it as much as I could, but I wasn't having any fun at all. Something wasn't right, and I assumed it was within myself. It was like being in the middle of a bad dream. I kept trying to talk to others about my feelings without sounding crazy. I was told I was either in the midst of postpartum depression or received a knowing laugh because I was just having a hard time with the normal stuff everybody goes through. That made me feel worse. In my heart, I felt nothing but despair. I even felt next to nothing for my new baby, although I knew how I should feel and was waiting expectantly for those feelings to come. I was going through the motions. Don't get me wrong -- I knew I had an important job to do, and I didn't question that for one single moment. I would be a good mother, do or die.

I just wondered if perhaps I would actually die doing it.

Yeah, it was THAT bad.

We have been through the ringer for the past four years. If I stop and think about it, being Erik's mother is more difficult than I ever could have imagined. For this reason, I just don't stop to think about it much unless I am writing here. That is why I still come here. There is a special kind of buzzing numbness that has set in for me after some time that allows me to complete my activities of daily living caring for my child with special needs. When this first washed over me, I couldn't feel much of anything at all. Now, however, I can easily feel selected emotions through it. I enjoy life from inside this thick bubble that surrounds me and protects my injured heart with a strange ansthesia that used to feel like a state of shock but is now quite familiar and useful to me. This is something I never needed or even knew about before but keeps me from shutting my front door and collapsing in a heap behind it every day. It's a blessing, but I am a little sad that I will always remain almost completely numb in places. At the beginning of this, I watched other WS parents live life seemingly so easily and wondered how they did it. Now I understand. It isn't easy at all, but it's definitely possible.

Erik is now a lanky, beautiful boy. His shining, blond hair is darkening to the color mine used to be. His strange, animal cries of distress in the night ceased long ago. The colorful sleep gowns and baby blue preemie outfit have been sealed in a box and seem like part of ancient history, like part of the most twisted museum exhibit ever. His development has taken another giant leap lately, which has allowed me to count my blessings once again (hence this post).

I am able to have real conversations with Erik. I don't have to look into his eyes and wonder what it is he needs or wants. I can just ask him. The answer is usually related to chocolate or playing outside. I asked him this morning if he would like socks on his feet, which regularly bleed due to his thin skin, and he answered, "Actually, maybe some other time." He rides his tricycle with ease and can eat like a lumberjack with the help of reflux medication, which I really don't give a second thought about anymore. His sense of humor is like mine, which tickles me to no end. Sometimes we both look at each other and laugh at something without exchanging any words at all. He is no longer a strange, fragile creature that wails nonstop and doesn't look at me directly. We have a real connection now. When he asks to cuddle and our noses touch lightly, I can see right into him through his lacy, blue eyes. He has a beautiful soul and seems to know mine quite well, too. His "disability" allows him to sense how I am feeling, no matter how hard I try to conceal my emotions from him.

These days when I fold clothes, I ache a little when I put the ones that have gotten small to the side. I don't wish the future would roll in faster anymore. Although I am hopeful, what's to come is too frightening and overwhelming to take in at once, so I don't look too far ahead and take a few days at a time. Besides, I'm much too focused on the child I have at this present moment. The one who amazes me every day with what he accomplishes, despite the fact things are sometimes a thousand times harder for him than they are for other children. Don't get me wrong -- we still have massive challenges. We still have really bad days.

However, my heart is in the game now.

Summer Firsts

2009-05-21T16:20:00.001-07:00

The church called today to personally invite Erik to participate in vacation Bible school in July. They have apparently already made arrangements for Marla, Erik's aide during church services, to be by his side throughout each session. I didn't know what to say to this, really, and the conversation was riddled with awkward, silent holes. I almost cried after I hung up the phone but held it together. I am just so incredibly thankful.

I also was invited to join a friend and her son (also with a disability) to participate in a parks and recreation art class for 2 to 4-year-olds. I was previously thinking about trying the music exploration class, but the more I read the description, the more I think art might be a better (quieter) way to go this year. Erik's hearing is still very sensitive and terms like "family music jam" seem a bit off-putting. We'll do it next year.

It's settled, then -- Jesus and art.

I have butterflies in my stomach, as this will be the first time we have done anything like this. I remember participating in classes like these as a child, and I wouldn't trade the memories for anything. Now it's Erik's turn.

I'm so scared. But I'm so ready.

The Cicada

2009-05-19T06:50:00.000-07:00

It's strange to see the feelings you have experienced written down by someone else. To see your story told by another family. Many of the details may be different, but the women who have shared their stories with the world make me realize that parents like me have gone through almost exactly the same thing before me, and there are parents to be out there who are about to go through hell after me. We are all singing verses of the same song at different times, like singing rounds. It's horrifying and validating at the same time.

This is a beautifully written account of another story like mine. It is a heart-wrenching piece written by Jenny B. called The Cicada. Many of us seem to mourn the loss of the person we thought our babies would become, but I have learned that we also mourn the loss of who we used to be pre-diagnosis. That's exactly what I have been doing for the past couple of years.

Dream Date

2009-05-18T15:39:00.000-07:00

Everything's gonna be all right!
So, woman, no cry;
No - no, woman - woman, no cry.
Woman, little sister, don't shed no tears;
No, woman, no cry.

-- "No Woman No Cry" (Bob Marley)

I had a great day with Erik.

He has been feeling better now since a trip over the mountain to see my grandmother Saturday. When I went in to greet him this morning, he was so distracted by the ominous presence of Gracie-Cat just outside his door that forgot to refuse to let me take him into the bathroom and place him on the commode, which he then used as if he had been completely potty trained for years. Usually, his borderline violent protests make any sort of potty-related activity completely impossible. He asked for waffles and ate two of them before allowing me to work out on the treadmill and shower while he watched his favorite shows (Super Why and Sesame Street). After that, he asked if we could go to the playground. It was a perfect morning for that kind of thing, and I decided we had better get out while it was still a little cooler. The filthy house could wait.

We went across town to a park we don't usually visit. It's near the trendy shopping district and a group of expensive homes and condos perched on a rocky bluff overlooking the river. A couple mothers stood in the shade next to double strollers, bottles of sunscreen sprays, and an array of interesting snacks in clear plastic bags. They smiled at me, and I smiled back.

Erik wore his AFOs today. I have been pretty bad about employing them lately, but his rapid growth has made his Achilles so tight that I have been forcing myself to strap them on him, even in the heat. However, I regretted putting them on as soon as we got out of the Jeep at the park and he began moving as if he had segments of stovepipe over each leg. He didn't seem to mind, though. We passed the fence and entered the play area, which was only being used by a handful of children. Erik walked stiffly up the ramps to a surface riddled with small holes and then held onto the railing for dear life with both hands, shuffling his feet forward until he could adapt to his new surroundings and determine the stability of the surfaces he seemed to have trouble visualizing. I walked before him over a little bridge and stomped my feet to show him how to feel things out. I could feel the other mothers' eyes on me. I suddenly felt a little like a mother bird teaching her hatchling how to fly. He stomped along behind me, and we made our way to the top with only one little fall temporarily shaking his confidence. We stopped to watch the traffic glide by, and he greeted each vehicle with a hoarse, hearty, "Hello, motorcycle!" or "Hello, car!" He was most thrilled by the deafening equipment two men in orange vests operated nearby on the grass, including a weed trimmer, a riding lawn mower, and a leaf blower. I sat to let the sun bake my nearly bare feet and shins and enjoyed the look of the dark green tops of the pines in the distance against a postcard blue sky. The birds sang, the lawn maintenance equipment farted in the distance, and everything seemed to hum in unison, making air feel almost electric. After Erik was finished observing the world from our lofty perch, he sat down on his bottom and took the slide to the blond-colored wood chips below. He found a steep set of metal stairs and informed me he wanted to climb them. After my encouragement and a slightly shaky start, he mastered them. He even seemed to listen to me when I suggested holding on differently. We were completely in sync. He continued to explore everything, and, amazingly, I was able to sit close by, relax, and watch him play fairly independently for the very first time. Once the sun rose high in the sky, dark, linear shadows of metal railings cast themselves over the surface of the ramp we previously took. Erik froze in his tracks, seemingly unable to see where to step. I asked him if the shadows were freaking him out, and he answered that they were. I offered my hand to him, which he gripped tightly, and we stomped together back to the top through the shadows. We passed one of the put-together mothers, who was now holding a chubby, drooling infant wearing a frilly sun hat in her arms, and she said, "Boy, the ramps and things here seem to be really good for him."

I didn't really know what to say.

For once, I wasn't thinking about physical therapy, really. We were just in our normal, perfect little world, set apart from everything and everyone else. I prefer it that way at the playground, which is a difficult place for me to be. This woman's voice snapped me out of my trance, and everything around us seemed to crash into me. I can't remember if anything came out of my mouth in return or not. This was a first. I have never had a stranger comment on anything except perhaps about how cute Erik is. I felt defensive and slightly confused. She certainly didn't seem to mean anything negative, but I felt slightly off balance. I smiled, nodded, and continued up the ramp.

And then I saw her son running in front of us in the sunshine.

Hooked over each ear were bulky pieces of grayish plastic with wires snaking from them to spots on the back of his skull. They looked to me like they could be cochlear implants for deafness, but I couldn't be certain, as I know next to nothing about this kind of thing. Suddenly, Erik's plastic leg braces didn't seem so obvious or strange after all. I took a deep breath and exhaled the last of my defensiveness into the humming atmosphere, attempting to absorb the energy around us even more for the reservoir of strength that I need to dip into from time to time.

When we left the park, we were covered in a light sheen of perspiration. Erik's cheeks were covered in a happy, exhausted blush. I assigned him the job of holding my water jug while I drove, and he seemed delighted with this job. As we made our way back across town, we sang "No Woman No Cry" at the top of our lungs. I felt wonderful and didn't feel like going home quite yet. I decided to run through the drive through at Taco Time. We returned with our little paper bags and enjoyed our bean burritos together at the kitchen table. I even poured Erik some sparkling orange pop, which I something I rarely let him have.

It just seemed like a special occasion somehow.

Construction Zzzzzzzone

2009-05-16T19:14:00.000-07:00

Here is Erik just as I found him during a nap recently. If he has the light on in his room and is too tired to turn it off before losing consciousness, he will bury his head like an ostrich under the covers and sleep upside-down. He also makes sure he is surrounded by a collection of toys, most of which seem rigid and miserable to have in bed, but he prefers it this way. Often it looks like someone has dumped the contents of Toys R Us atop his mattress, and he sleeps peacefully in the middle of it all. Of course, Stinky Dog is always close by. You can see him here under Erik's foot, jockeying for position among the rest of the toys. I have never seen a kid regularly sleep with a track excavator before, but it makes sense to me. Erik sure does love them.

Slow Healing

2009-05-15T13:43:00.000-07:00

Believe it or not, Erik is still not feeling well after almost four weeks, although for the most part, he has been pretending to feel peachy in front of others outside of our home. He has been lazing on the couch and watching us exercise in the morning instead of holding our hands and doing the moves with us. He has burst into tears at the tiniest things. He is not eating much of anything most of the time and then binges because he is hungry at other times, which makes him sick. He put himself to bed for a nap yesterday and asked me to read him a book.

Not normal.

This morning I thought things were improving. He was perky when my neighbor came to join us for some exercise. He flirted with her, rolled his toys around, and played his piano. I took him to school, and he seemed happy.

At lunchtime, my cell phone rang. It was Erik's teacher. She reported that she couldn't really put her thoughts into words but wanted to let me know that Erik was just not himself. He filled his diaper (a first at school in itself) with a large amount of toxic waste (although she stated it much more politely) and kept repeating things like "NO" and "I DON'T WANT TO." I thanked her for the call and waited for the school bus to arrive.

As Erik got off the bus, he had the driver racked with giggles and was his usual, chipper self. When we stepped inside the house, however, he politely declined lunch and went off to play with his trucks. My parents arrived to pick him up for the afternoon, and when they asked him if he was ready to go, he said he didn't want to.

Not go to Boppa and Gua's house? Something is definitely wrong.

As my parents climbed into their car to leave without him, I told my mother I would take him to the doctor today. Erik sat in exhausted defiance on the grass next to his tricycle. I sat down next to him and quietly explained that his Boppa and Gua were going back to their house. He seemed to be okay with that -- until their engine roared to life. The boy snapped out of his trance, looked up at me with instant tears shining in his eyes, and cried, "No!" He stood up from his soft place in the grass and began to run toward the car. They opened the back door for him, and he climbed in.

Why is it that Erik seems so vulnerable to everything on this earth to me? My brain reminds me of the stomach bug going around town that reportedly takes this much time to pass. I'm even in the medical field and am quite aware of what to look for and when to take my child to see a physician. He is hydrated and rested. But things are difficult enough on a daily basis without this crap. Especially for Erik, whose GI system doesn't work all that well without medication twice a day to begin with. Somehow I think the universe should just provide a free pass for us regarding this kind of childhood illness, but it doesn't work that way. I soothe and care for the normal bugs, cuts, and scrapes without much of a second thought but am always aware that every injury and illness has a deeper, ominous flavor because of Erik's physical challenges, and I can never completely silence that voice deep inside of me that attempts to send me into a panic. It doesn't have the power to do that anymore. However, its whispers still haunt me and always will. I can't imagine that as Erik's poor little body ages that this will improve at all with time.

That scares the daylights out of me.

Three Years

2009-05-09T16:03:00.000-07:00

I wrote the very first entry of my blog on Mother's Day of 2006. Happy 3rd birthday, blog o' mine. I have never loved and hated something so much at the same time. Of course, this excludes a little something called Williams syndrome.

WITH TIME

With time
you will learn to shoulder dense burdens
so incredibly heavy they once made your heart strain
and your lips mutter groans of agony
that the universe didn't seem to hear.

With time
what seemed unbearable will become mundane,
and the narrow tunnels for vision
will swell to allow the rest of the world
to come into focus at last,
although you will never see things the same.

With time
even your nightmares will fade,
yielding the power they once had to
twist you into a sweaty knot in bed
and jolt you from sleep, wrapped up in damp sheets.

With time
you will appreciate the sweet, buzzing numbness--
the anesthesia you will fight with all your might at first
but learn to succomb to in order to feel less
and attempt to endure more.

And you will endure more.

With time
you will learn there is no other option.

With time
you will simply learn to prevail.

Crappy Visit

2009-05-05T16:41:00.001-07:00

In every life we have some trouble
When you worry you make it double
Don't worry, be happy

-- "Don't Worry, Be Happy" (Bobby McFerrin)

Yesterday I had a message on my cell phone reminding me about Erik's "Happy Visit" (apparently we have graduated from the "Fun Visit") to the dentist scheduled for this morning. I could feel my face fall as I listened to the cheerful voice and felt my mood turn stormy. After our last appointment, I was ready to demand a copy of our records and make an angry exit today. I tried to keep an open mind, but I found myself a little more than tired of trips to that place. I have lost count of how many times I have been there just in this calendar year.

I made sure not to tell Erik where we were going until this morning at breakfast, and he seemed to take the news well. When we arrived, we were led into the private room with the big, orange chair once again, although the wide door was left ajar. Erik was already creating a lake of hot tears, telling us all, "I don't want to!" The hygienist gave Stinky Dog a ride in the chair, acting as if we were in the middle of the most magical place on earth, and pulled out the usual tricks that seem like a complete waste of time to me. The only thing Erik seemed thrilled about was the suction tube, which I previously told him was a little vacuum. He expertly used it on Stinky Dog's face and shook the stuffed animal, indicating that Stinky was quite ticklish.

The dentist made his entrance, upsetting Erik even more. He placed his large hand on my shoulder and greeted me warmly. He seemed more connected with Erik and less distracted than he did at our last visit. He talked to me through his conversation with Erik, telling him he would only do what I approved of doing, and this made me feel better. We ended up abandoning the large exam chair. Instead, the hygienist lowered a small chair on wheels, and I sat in it, holding Erik firmly on my lap. Erik was now hysterical. I put one hand on Erik's forehead and pressed the back of his head against my shoulder. His screams intensified. I smiled at the dentist to signal him it was okay to proceed, and he rolled his own chair closer to me. My knee pressed into the crotch of his expensive slacks, and I tried not to notice. We locked together like this, sandwiching one angry patient, and I held Erik's strong hands down. I decided it was just best to get this unplesantness over with.

It wasn't necessary to use the metal device to lock Erik's jaw open after all. It remained a silent, threatening presence atop the paper-covered tray. Instead, Erik cried so hard that his mouth automatically opened, allowing the dentist to paint the back teeth with the cream-colored fluoride varnish and wipe off the excess with gauze pads. The dentist soothed Erik and reminded him the world wasn't perfect.

This I know.

After the short but messy procedure, the dentist tenderly wiped the tears and snot running down Erik's face. Erik ceased sobbing and actually thanked the dentist on my cue, obviously not holding a grudge. In fact, when the dentist asked for a hug, Erik quickly gave him one, almost collapsing into his arms. We collected our balloon and toy car from the frog bucket, and I returned to my chair back in the waiting room as promised to let Erik stim on the spinning toys for five minutes. Another mother attempted to make eye contact with me, but I was feeling less than social and looked away. I'm sure Erik's screams were more than audible from any chair in the building, and I couldn't imagine what she was thinking when we emerged and my 4-year-old crawled around on the floor, giggling with delight and spinning everything that wasn't glued down. It's not embarrassment I feel but a sense of disconnect with the world on occasions like these. Erik looked at the other children in the room and brightly spouted, "Hola, amigos!" and "Hello!" The younger girls echoed a pleasant greeting on their way by. The older boy looked annoyed and ignored Erik altogether. Typical. It will be a miracle if I can get through Erik's childhood without slapping a stranger's child. So far, so good. But I'm not making any promises.

Soon I dragged Erik from where he was sprawled on the floor, and I made it to the car with just minor protests. As I buckled him into his car seat and deposited the putrid pile that is Stinky Dog on his lap, I took my palms and placed them on each side of his face. I paused for a moment and looked into his eyes, holding him there almost too firmly, and I kissed him very hard on the forehead before I shut the door and walked around the Jeep.

Our next "Happy Visit" is a whole three months away this time.

Boulyah!

Train Phobia

2009-05-04T07:44:00.000-07:00

Erik was still nervously chattering about trains as I put him into bed last night. I snuggled into my own bed to stay up late and watch the new episode of Breaking Bad when I heard the whistle of the 10:40 pierce the night air. I frantically pressed the mute button on the TV remote and waited with every one of my muscles locked into a tight, whole body cringe.

He slept through it this time.

At this rate, I am developing my own issues regarding trains and sirens. I freeze every time I hear one and ready myself to begin the damage control process.

Sigh.

Welcome to the Club

2009-05-03T15:55:00.000-07:00

From my friend and fellow WS mother, Laura, about finding yourself the parent of a child with special needs for the very first time. I don't think I have ever read anything so beautiful or hopeful as this. I remember being literally welcomed into "The Club," and wondering exactly what that meant. I wish I had this at the beginning of it all.

Don't forget to grab the Kleenex. Click here.

Nightmares

2009-05-03T06:56:00.000-07:00

Erik woke up screaming again last night. His shrill cry pulled me out of the deep sea of sleep where I floated under the surface, and my body automatically shot up in bed. My heart pounded dully in my ears as I made my way to his bedroom.

I opened his door and crossed the carpet, which was a mine field of jumbled toys in the darkness. The top of my foot caught the edge of the hard, knobby tire of a monster truck. I attempted not to swear.

As Erik detected my presence, his screams melted into heaving sobs. I settled down next to him in bed and stroked his hair. He began to explain his distress.

"Little Red Caboose! Coming down the track! I heard the whistle!"

He was still hysterical. I wondered if the sound of a distant train had seeped through his bedroom window or if that particular sound, which tormented him horribly just a couple of years ago, continued to haunt him in his dreams. Sirens do. He began ranting about flashing lights and tractors. In the center of my still sleep-numb body, my heart sent throbbing ache to my brain.

He let me hold his hands and mumbled through his tears. He said, "I love you, too."

I stayed a few minutes until he was calm, and then I got up to leave him to go back to sleep, despite the urge I had to stay and lie next to him in his tiny bed. He needs to learn to fight his own battles. Over the years we have ensured that he understands that we are just around the corner. He began to whimper, and I told him that he needed to get some sleep.

I am thankful that Erik will never fear the bogeyman I knew as a child. Because of his strange love affair with the world and all who live here, there is and likely will never be that particular monster in Erik's dreams. At least not like the one that came for me in the night. However, there is apparently an endless supply of terrifying nightmares in Erik's world that I will never know or begin to understand.

Nightmares that don't automatically dissolve in daylight like the bogeyman did.

Taking Chances

2009-04-30T15:04:00.001-07:00

How scary it must have been for these parents to let their children chase a dream...and what an outcome.

Sophie's Run 2009

2009-04-29T06:19:00.001-07:00

(Erik, Brandon, and Cole. The "Three Amigos.")

We made it to Sophie's Run, the 5K for Erik's friend with WS, again this year. It has become a special tradition in our family. This was our fourth year. The first year we went, Erik's diagnosis had only been official for about a month, and I was in tears an awful lot. As time has passed, it has become a celebration with my friends and family. It almost feels like some sort of family reunion to me. Many of us have emotions just underneath the surface that threaten to spill here and there, but that sloppy state is perfectly acceptable in this setting. I find that absolutely refreshing. We still cry occasionally, but we don't have to do it alone, and we find ourselves laughing until it hurts, too. I did an awful lot of laughing this year.

We set up camp in a room at our favorite hotel. Brian was kind enough to get a room with a view of the river so that we could watch the university crew team practice. The men and women's teams silently glided by at amazing speed in their knife-like boats, blinding me with bodies covered in pasty skin that had yet to see sun this season. Unfortunately, our room only contained one generous-sized bed. As the hotel was packed full of high school kids and their band instruments, we were unable to switch rooms.

We headed downtown to a campus sports bar to meet my parents and my aunt for dinner and to watch the Portland Trailblazers play. We feasted on burgers and fries, and Erik watched the world go by through a large window behind our booth. From there, we headed to the grocery store for cold medicine. I have been ill since last Tuesday and figured I would need something to sleep if I would be sharing a bed with two other people who have a tendency to snore. Erik absolutely freaked out in the store. His behavior made it impossible for either of us to navigate the place with him, and he screamed and whined. I could hear him aisles away as I grabbed the items I needed. I ended up carrying him out to the Jeep to wait for Brian to pay for our things. By the time we arrived at our room, he was beside himself, screaming that he wanted to go home and hitting the bed with his fists. We were finally able to get him to lie down between us by shutting off the lights and climbing into bed ourselves, and he calmed down for most of the night. He awoke once mumbling about fireworks and began touching my face, identifying my nose, mouth, and ears in the dark with the hoarse, Williamsy tone he sometimes prefers to use, making me giggle against my will through my exasperation.

After a restless but surprisingly successful night's sleep, some of which I spent on the floor, we showered and dressed, expecting to load our things in the car, eat a continental breakfast, and head to the park for the event. Erik began to cough. I then heard his stomach make a sound much like a sloshing aquarium. He looked slightly confused. I ran to him, swooped him up, and sprinted to the bathroom with him just as he began vomiting. As he cried and heaved in my arms, I felt relief knowing there was a reason his behavior has been so out of control for the past few days. He looked up at me through his tears and said, "Mama, I spit orange!" See, Erik associates throwing up with oranges, as he had just eaten one the first time he remembers upchucking. "Spitting orange" is now the term he uses, no matter what he has just consumed.

I called my parents, who were camping nearby, and informed them that Erik was sick. By this time, Brian had taken over my post on the bathroom floor. We told them we would see them at the park. We would simply pick up our race packets, say hello, and go home.

How I underestimate the power of Erik Quinn.

The boy perked up at the park and immediately began a thorough inspection of the wheels and tires of the vehicles around our Jeep. He greeted people with smiles. I reconnected with my friends from other parts of the state. Sophie sang the National Anthem to the crowd of about 450 people with bold, beautiful confidence, and I stopped chatting with my friend in the parking lot to listen. We both had tears streaming down our faces and laughed at ourselves when the song was finished. Before I knew it, I was in the center of a large, talkative crowd at the starting line, and we all began to walk or run. Erik rode on various shoulders without hurling on anyone and even ran some of the course. In fact, he completed the whole dang thing.

Of course, in the words of Erik's favorite stuffed animal, Stinky Dog, he still "felt like woof," and after some time playing in the misty weather on the playground after the event, we loaded him into the car with his favorite blanket and DVD for the trip home, opting out of Sophie's birthday pizza party this year. We said our goodbyes and headed over the mountain. Erik doesn't ever really sleep in the car but seemed happy to ride, and his giggles sounded wonderful as he watched his video.

I smiled all the way home.

System Failure Imminent (#2)

2009-04-20T05:57:00.000-07:00

About 10 of us went out for breakfast yesterday morning before the local boat and RV show. Erik did amazingly well, sitting between us for an extended period of time while we sipped coffee, talked, and laughed. It was incredibly relaxing. We shared our omelet, slabs of toast, and cinnamon roll with him. I eventually walked him down to the video arcade at the other end of the restaurant to get our pinball fix, and then we loaded in our cars to drive to the next town for the show.

The remainder of the day was a different flavor. At first, things were great. Brian and I briefly got to explore the massive collection of travel trailers parked in a field under the blazing sun. These ranged from the ridiculously expensive, including models with gas log fireplaces, flat screen televisions, ATV garages, and bars, to a bathroomless, lemon yellow, tear-shaped model that could be towed behind almost any vehicle. When we got to the lineup of more reasonable models, it was difficult for me not to think about the government trailers that materialized after Hurricane Katrina. Packs of salesmen roamed the grounds, popping up out of nowhere and frightening me from time to time as I examined cooktops and commodes.

Erik became increasingly difficult to control. I was horrified when he completely ignored my shouts to stop before he ran over an expanse of parking lot after spotting a forklift. The beginning of the end was when he discovered an open space studded with gleaming all-terrain vehicles of different sorts -- bucks, and quads, and motorcycles. Oh my. He sprinted toward them without a second thought. He then flitted from vehicle to vehicle at a ridiculously frantic pace. I tried to snap a decent photo of him, but he was in constant motion, making it impossible. Brian and I had to laugh at his obvious delight. For some reason, he would lie down on the grass and insert the top of his head into each recessed hubcap. He bent at the waist to inspect each tire. He talked to them as if they could understand him. I even overheard him mumble, "What a beautiful quad."

He was in absolute heaven.

I love to do special things for my son. Knowing there would be vehicles he would enjoy at the event was the major reason we attended this show. Lately we have put a lot of thought into things we can do with him to get him out and about. The problem is, however, we have to cease doing these things at some point and go home. This always results in a major Erik malfunction, and we were about to experience the worst one in history. Activities as simple as taking him outside in the yard always seem to end with one of us carrying or pushing a kicking, screaming boy through the front door, making me wonder if even our insignificant outings are really worth it. It may seem like a small price to pay, but after this occurs about three thousand times in a row, it gets really frustrating. You can't kneel down to his level and reason with him when he's this upset. I guess that all I can really do is ask the folks who don't wear our shoes to hesitate before they cluck their tongues and shake their heads in judgment seeing a parent carrying a kicking, screaming child to the car. They just might be doing the very best they can. There are some days I am just not up for his rage, and we remain inside the house. I fully admit it.

As Erik was forced to ride on Brian's shoulders away from his beloved ATVs, he bawled and screamed. When that didn't work, he tried manipulation, begging Brian, "Let go of me, please." When that failed, he went back to screaming and crying, making the remainder of our time browsing impossible to enjoy. Our voices both took on a raised, barking tone, which only seemed to upset Erik more. We were officially fresh out of reasonable ideas, and Erik was miles beyond reasoning at all. Brian carried Erik back to the Jeep, and I went to inform my friend that we were leaving. As we drove out of the fairgrounds, Brian and I calmly explained to Erik why we had to go home, but I can never determine if he really comprehends what we're saying or not. I would think that if he did, his behavior might change, but it doesn't seem to make any difference at all so far. However, we faithfully continue our explanations, hoping some of it will eventually sink in.

The rest of the day was slightly better, but Erik remained "off," screaming "NO" at us both with great gusto and refusing to do anything we asked him to do. He spent time alone in his room with each outburst. The whole outing just seemed to rock his world for the rest of the day. After Erik took a good nap, Brian decided to take him to the store for furnace filters in the evening. Erik did well, even without the confines of a shopping cart around him.

He was back to his old, Erik-y self.

I love doing special things for Erik and will continue planning them, but there is definitely a price we end up paying. We just make sure we're up for our punishment afterwards, which hurts my heart more than a little.

On some days, it's just simply not worth sacrificing my sanity.

Hibernation

2009-04-18T05:16:00.000-07:00

The photo above is Brian holding Erik up to ring the church bell. I can't imagine how the people trying to sleep in the surrounding neighborhood feel about the bell, but it's nearly impossible to walk by this dangling rope. It's much too tempting. Anyway, Erik's hearing continues to be very sensitive, but his spirit overrides his hyperacusis in cases like this these days. It's pretty hard to feel anything but triumphant when he pulls the thing and the joyous clanging fills the air. One more giant step forward for Erik.

It seems I'm still having great difficulty finding words lately, but they are coming to me slowly. I thought once again of hanging this up for fear of this space becoming a dippy "mommy blog," which is not what I set out to create, but I have decided to see what happens. I feel a bit lost these days. Williams syndrome and my challenges with Erik are the least of my struggles at the moment, and a lot of my writer's block comes from the shock and intensity of a couple of things that have occurred lately, neither of which I can describe on my blog for a variety of reasons. Instead, I have been very effectively shutting down my emotions, making it nearly impossible for me to continue to write, and going through the motions of each day to make it through some really tough times. I keep telling myself that this, too, shall pass, and I'll be back to myself soon. It's the first time in years I can visualize myself being truly happy. It's a goal that is just slightly out of reach at the moment. I'm not in a good place, but as long as I keep reaching, I have hope.

I spent much of the day alone yesterday working and doing a lot of little things around the house while Erik was at school and then at my parents' house. I attempted to hit the salon on my way back from school to sneak away to enjoy the feel of scalding wax on my face and perhaps a new treatment of some sort, but they were closed for another 30 minutes when I arrived, and I decided to bag it. For those of you around me, I'm not angry with you. Seriously. My eyebrows just make me appear that way. I'll get them done soon.

My neighbor has come down our dusty road each and every morning lately to join me in the workouts I have been doing faithfully for the last two years. It's the only time that feels like it's truly mine, and even Erik seems to respect that as long as I give him some extra attention when I'm through. I have always worked out alone and thought I preferred it that way, but her company has proved to be quite enjoyable, and I find myself laughing so hard I trip over my own feet quite often. There are certain movements we do with our arms that are very monkey-like, and her disturbingly realistic orangutan noises send me into hysterics, despite the fact this joke of hers is now nine weeks old. I have also ramped things up a bit and tacked on an extra 20 minutes to my daily routine, resulting in me being in the best shape of my life. Admittedly, that's not saying much, but I rarely have the headaches that used to keep me down on the couch for days at a time, and my back no longer hurts whatsoever while I am working at my computer. Generally, my sleep is also greatly improved, although last night was a complete bust. I have remained at my goal weight now for two years, and that feels good. I look back and don't recognize myself anymore for a variety of reasons.

We are planning to drive out to the fairgrounds this weekend for our local RV and boat show. My neighbor mentioned it during our sweatfest yesterday and said that Erik might enjoy looking at the ATVs, trailers, and motor homes on display, so I called a friend of mine who, as it turns out, was already planning to take her family. We're meeting for breakfast and taking all of our kids together, which I am greatly looking forward to.

Anti-Dentite

2009-04-15T16:32:00.000-07:00

I continue taking Erik to the dentist every two to four weeks. The photo above is of Erik using the suction tube on Stinky Dog. I tell Erik this piece of equipment is a miniature vacuum, and he enjoys playing with it.

The dentist no longer amuses me much, as I feel like he views us both as a gargantuan inconvenience because of our requirements for a private room and extra attention. Even his pimp-like, leather-inset pants and freshly-pressed shirt quietly irritated the crap out of me. I was informed that "Ms. Nikki," the woman half my size who insisted we deal only with her for Erik's special needs, is no longer employed at that office. Our new technician was able to sit Erik in a chair and eventually convince him to open his mouth so the dentist could paint foul-tasting fluoride lacquer on a couple of his teeth. Of course, I was required to explain hyperacusis all over again to the new technician. The dentist repeatedly instructed Erik to "calm down" and "stay still," and not in the kindest tone, but Erik seemed almost shocked into obeying. As he peeled off his orange gloves and got up to leave the room, Dr. Mike gruffly told his assistant they would be using the device to pry Erik's mouth open for an extended period of time at our next visit. Knowing Erik, this likely will traumatize him all over again, erasing any progress I had made with the whole desensitization process. Weeks of work down the drain.

I then took Erik to the main waiting room the office shares with a pediatric medical clinic and let him spin some wooden wheels on a bus-shaped play structure while I gathered my thoughts. I noted how strange it was to feel angry and disappointed while wearing a bobbing helium balloon tied to my wrist. Erik looked up at me and laughed, obviously delighted to indulge in some good, old-fashioned stimming. When it was time to go, he protested and began to cry, telling me he wanted to keep spinning the wheels. I practically dragged him out the front door, as he is too heavy to carry anymore.

Fun visit, my ass.

Back Soon

2009-04-01T14:43:00.000-07:00

My energy is being diverted too many places to sit down and concentrate long enough to write lately. On top of that, I feel like I'm entering a new phase of being me but am having difficulty putting my feelings into words like I usually do. I predict a mudslide of posts once I figure things out. I have some poems and random things in my head that are trying to escape as well.

In the meantime, I'm going to take another short break and see if that helps me knock some thoughts loose.

I'll be back in about ten days.

N

Spread the Word to End the Word

2009-03-31T06:39:00.000-07:00

Be the change you want to see in the world.

-- Mahatma Gandhi

Today is Special Olympics' "Spread the Word to End the Word" day. They are collecting pledges on their website from people who vow not to use the word "retard" in a demeaning, hurtful way.

If you haven't heard Soeren Palumbo's speech honoring his younger sister Olivia, today is the day to listen to it.

Obsessions 2009

2009-03-24T03:44:00.000-07:00

Erik's current obsessions --

* Vacuum cleaners. The first thing he usually asks a stranger is whether or not they have a vacuum cleaner. If the answer is yes, which it most likely is, he will ask if there is a light on it. I'm surprised how many don't these days. I bought him his very own toy vacuum cleaner (with a light on it) and let him use mine from time to time.

* Lights. Especially lights on vehicles, my camera, and, of course, vacuum cleaners. He likes flashing lights, especially on emergency vehicles. Our neighbor is a policeman, and he stops occasionally in front of the house to turn on the red and blues for Erik. Many people who visit have learned Erik watches them back out of the driveway when they leave and will turn on their hazards or flash their headlights for him. His daycare provider even reminded me to do it the other day when I dropped him off, as Brian apparently does this as well when he takes Erik on a regular basis.

* Wheels. This used to be number one. He will still stim from time to time by spinning the wheels on toys, but not nearly as often as he used to. He inspects the wheels and tires of vehicles in parking lots and likes to say "lug nuts," which always makes me laugh for some reason.

* Fire alarms. I am unsure how he knows what a fire alarm is, but he does. He locates them in each new building we visit and points them out to me and anybody else who passes by. He seems to want reassurance from me that they will not make noise.

* Whether or not our vehicles will start. Yes, he is STILL obsessed with this. A friend of mine was helping me put him in the car the other day and was surprised when Erik freaked out as my key entered the ignition. He also closely watches the dome lights in my vehicle. They apparently flash on and off briefly when I start the engine, which is apparently an indicator of whether or not my Jeep has enough juice to run. He wakes up sometimes talking about my Jeep and if it will start.

* Sirens. This is also making its way down the list. While a siren used to send him into hysterics, making fire season hell on earth in our house on the edge of town, he usually only obesesses about whether a siren might sound when he is very tired or half asleep. He still wakes up from time to time speaking about sirens. I'll never forget the afternoon lightning was striking everywhere and all I could do is blast his stereo and hold him while he sobbed. Thankfully, that usually isn't the case anymore. Sometimes he even enjoys a siren that is far enough away that it doesn't hurt his ears.

There are other things he enjoys but that do not qualify as obsessions. Normal things like going outside, eating a nice, steaming bowl of Malt O Meal, holding Stinky-Dog, or visiting his grandparents. His obsession with tweaking doorstops has finally faded into history. He will occasionally tweak one on his way by, but this doesn't make the list anymore (Note to Self: Locate and replace missing doorstops).

I would bet that a lot of your children have had these same obsessions, diagnosis of WS or not. I find this fascinating. I wonder what Erik would have done before the invention of the wheel. I can just see him wearing a brontosaurus skin diaper, rolling the roundest river rocks he could find around over the ground in a stimmy trance.

Deep Blue

2009-03-23T06:24:00.000-07:00

I am in a blue mood day. That frigid color the last blue layer of ocean is before slipping into the the blackness of outer space deep beneath the surface. I have remnants of dreams fluttering in my head like laundry drying in the breeze. Dreams I cannot remember but which make me feel paranoid and nervous.

I was brave yesterday and called a friend to meet me and Erik at McDonald's with her children. I was tired of being in the house watching the weather become more gloomy, and the outing actually sounded like fun. I risked the hangover that usually comes with activities with other children.

I always put on my happy face and pretend like it feels like we belong in a crowd of other families, but it still doesn't quite feel that way. I hate the way people look at me and Erik when I am in a vulnerable state like this. I find myself looking for reassurance, lamely asking my friends if Erik has improved since our last outing or nervously giggling at his antics when he approaches strangers with his seemingly helium-infused hellos when all I want to is snatch him up and and protect him up in my arms. He's getting too big for that now.

I purchased a small packet of french fries, which ended up being a very generous portion, and Erik ate them with gusto, growling wildly for effect and smiling at me as he did so. I hand fed him three-quarters of a hamburger that I tore into small pieces while the other children expertly consumed their lunches with little assistance. My friend and I spent some time standing outside the play structures supervising the children and catching up. Despite an invitation to play hide and seek by his friend, Erik refused to play inside any of the brightly-colored plastic tubes. By now, his friend is accustomed to this and continues playing without him. Erik did venture just inside the entrance of a couple of play tubes and sprawled out on his stomach on the floor, creating a living speed bump for the other children who entered and disappeared above him. At one point, Erik watched his friends playing inside through a window and joyfully rapped his fists against the plastic. I felt like he did, only much less happy about it.

Forever on the outside looking in.

After lunch, my friend treated all three children to towering vanilla ice cream cones. Erik can't hold an ice cream cone and eat it at the same time without dropping it like other children seem to be able to do. I held it while he scooped bites with a spoon and became slightly angry with me and the whole process. It seems he is beginning to compare himself with his friends for the first time. I'm sure this will speed his remaining developmental milestones, but I am watching the seeds of frustration and the falling away of the ignorance regarding his differences being planted. That frightens me.

I don't want him to know he is different. Ever.

I don't want him to feel the things I do when I walk into a room filled with children. There is nothing I can do, though. It's coming whether I want it to or not. If I'm lucky, I will always be there when he turns around for reassurance and strength. I know in my heart this is what I am supposed to do, and if I don't have the strength to do it, I will borrow, beg, and steal it from somewhere. It's my job, and although it is scary as hell, I am incredibly good at pretending I'm a lot stronger than I actually am. I always have been, even before Erik. I should have been an actress. I just know that sometimes when I pretend I'm okay, I actually begin to believe it after a while.

Over the last couple of years, I have watched the parents of other children with disabilities take their kids to parties and parks and schools. Through the sharing of their feelings, I understand that this sense of not belonging will never completely fade. We will always feel a little bit like we are rapping on a window from the outside. I now have evidence that it becomes more tolerable. This is in the phone call I made to my friend to initiate this outing. That's something I would not have easily done, even in the recent past. It's easier because my friends have proven that they will support me, no matter what. I will continue to paste on pink, lipsticky smiles and take away the precious memories I would not have dared to create for me and my son if I had never left the house. No matter how scary it feels. I am incredibly proud of myself for pretending to be that brave. Amazingly, I'm starting to believe it.

But the ache that resides in the deepest part of me will never completely fade.

And that makes me incredibly blue.

My Life in a Nutshell

2009-03-20T05:37:00.000-07:00

This is a video of me and my guy hanging out in the living room. When your child has little to no interest in toys, you learn to make your own fun. The flaccid, taupe-colored item that looks like a wet rag is Stinky Dog. You can tell when Stinky is speaking or singing, as his voice is a few octaves below ours.

Erik loves all animals except for my Gracie-Cat. Seeing her when he comes home from school actually makes him agitated. They steer clear of each other, which works pretty well. However, Erik has decided that Gracie does not meow but emits a sound best described as "ROUNCH." For this reason, instead of using her name, he calls her "Rounchy." My cat is the only feline I have ever known that can be infuriated purely verbally. The ending of the video reminds me a bit of the tragic documentary Grizzly Man. However, there were no animals or children injured in the making of this film. Sadly, I am another story entirely. This is why I keep Bactine on hand.

"Fun" Visit to the Dentist #1

2009-03-18T03:43:00.000-07:00

We went to the dentist yesterday for his first special needs "fun" visit to attempt to take the trauma out of the obviously upsetting experience for Erik. We arrived before any other patients and met Erik's hygienist. We were able to get him to sit in the chair briefly and showed him the equipment used to clean teeth once again. The hygienist spent a lot of time polishing my hand with her tools to demonstrate the process to Erik. We spent a total of approximately 20 minutes there, and she was able to get Erik's jaws to open just enough to brush one of Erik's teeth with berry-flavored fluoride. We were provided a toothbrush and a toy with wheels before I took Erik back out to the waiting room to allow him to spin the brightly-colored wheels on the wooden play structure for a few minutes. We go back yet again in two more weeks.

I guess we'll get his teeth clean after all. One at a time.

I'm Climbing

2009-03-15T07:40:00.000-07:00

We took Erik to the park yesterday. I could not believe my eyes. He did this over and over again by himself for the very first time. I can't believe he is playing around other children now.

Friday was very difficult for me, but everybody around me seemed extra nice, even without knowing I was having a hard day. Things that happened:

* After I dropped Erik off at school, I received a text message from my neighbor thanking me for working out with her during the week. She said I inspired her, that she loved me, and that she wished she had joined me sooner. I have to admit, I have never laughed so hard while exercising. The day we sat on exercise balls to work out was the day I almost ruptured my spleen laughing.

* After that text message, my cell phone rang. It was my friend with ALS. He successfully completed a stationary bike ride at the physical therapy office to qualify for an ALS study in Texas after two previous attempts fraught with exhaustion and gross error on the part of the medical staff. He was elated, and his spirits were finally up.

* The phone rang when I got home, and it was Erik's teacher. She was very excited and wanted to share a story with me. They had a little white and tan rabbit visit the classroom. I have witnessed the way animals react to Erik, and I smiled, knowing what was coming. Each child was allowed to hold the bunny. She said it was quite twitchy and nervous, but as soon as it got to Erik's lap, it became incredibly calm, even with Erik touching it exactly like the other children had. She was amazed and told me it seemed like the rabbit knew he was special. He then bent down and whispered, "I love you, too" to the creature. She said it was one of the sweetest things she had ever seen and that they all love my child so much.

* When the school bus came to drop Erik off, his backpack was MIA. I told the driver that it was probably still at school and not to worry. Twenty minutes later, the bus came rocketing back up my driveway. She had apparently found it and delivered it to my door.

Three Years

2009-03-13T05:19:00.000-07:00

I found God on the corner of 1st and Amistad
Where the West was all but won
All alone, smoking his last cigarette
I said, "Where you been?" He said, "Ask anything"

Where were you when everything was falling apart?
All my days were spent by the telephone that never rang
And all I needed was a call that never came

-- "You Found Me" (The Fray)

Today marks the third anniversary of the day we drove to the children's hospital and made our way home through the rain with Erik's diagnosis. At the two-year mark, I felt a sense of triumph, but this year I mostly feel exhaustion. I suppose this day will feel a little bit different each and every year.

I knew we were about to receive a diagnosis that day. In my heart, I even knew which one. When the geneticist handed me a stack of papers identical to the one I had printed out at home, being correct didn't soften the blow a whole hell of a lot. I was just acutely aware of the fact I was about to be sucker punched in the gut. I saw the doctor's lips moving, but, quite honestly, all I heard after the words "mentally retarded" was hissing static. My life would never be the same.

Some of the sharpness of that afternoon has begun to fade, but the day will always feel dagger-sharp to me. The way the exam room smelled and felt. The pounding of my pulse in my ears. The sudden heat in my cheeks. The tears that began to spill and wash away my composure, despite my premeditated plan to contain them. The way my blood rushed from my limbs and poured into my core as if I had just sustained a life-threatening wound. The people who seemed to examine our family as if we were grainy pictures in textbooks. The scream of despair that lodged in my throat as we sunk into the hospital lobby on the elevator. The call I made to my mother as we drove out of the city. Each and every song that played on the radio. Most of all, I will never forget the way I couldn't shake the feeling that a filthy parasite had woven itself into my beautiful baby's body and the desire I had to rip it out of him and make him clean again. Crazy, I know.

There are some things I will never forget, no matter how hard I try.

I view each anniversary as an accomplishment, too. I have one more year under my belt. This time around, though, it's different. Looking back, the last three years feel like three hundred. I hate that I'm still a rookie at this and that I still have any grieving left to do. This year I didn't stop to grieve much on a daily basis, so I suppose this makes stopping to recognize my feelings more difficult than I had imagined it would be.

I am thankful the thick wall between me and Erik has finally begun to disintegrate. We have begun to mix with the rest of the world to the best of our abilities. We are beginning to talk to each other on a new level. We sing at the top of our lungs in the car to songs about tractors and drifters and girls. We laugh until our faces hurt at our own private, primitive jokes. He delights the people around him, and he is genuinely delighted by them. He has opened my eyes to the world in a new way. I want to see the world through his eyes.

However, this diagnosis is exhausting. There are the health problems that threaten to emerge around each and every corner. The cognitive difficulties that frustrate Erik and cause problems at home. The raw, unbridled emotions just beneath the surface of him that are triggered by the tiniest misunderstanding of how the world works. The days he is bent at the waist to examine the wheels of each vehicle in clinic parking lots as I try to rush us to appointments. The way he clamps his palms over his ears every time I pick up an unfamiliar object. The way he talks about vacuum cleaners, fire alarms, tractors, and all-terrain vehicles 24/7. The way he asks me twelve times a day if the car will start, even though it has been two months since the morning my Jeep's battery died.

Worst of all, there are now days I feel the weight of the stares of strangers. Some days I want to take him firmly by the shoulders, shake him, and scream, "ACT NORMAL!"

I sometimes hate what this diagnosis has done to me.

Would I change things if I could? I'm grateful I don't have that opportunity because I can't promise you I wouldn't. I will never be the person I hoped I would be. The woman that causes people to look at each other and whisper, "She is so amazing. She never complains and always has such an positive attitude." Williams syndrome has robbed me of what remained of my innocence and threatens to drain my already brackish reservoir of optimism. It has hardened my personality and softened my heart at the same time. I hate it, and yet I love the people it has brought into my life. I love the way it has helped shape my son's wonderful personality, and I hate the fact it will make his life incredibly difficult and invite ridicule from some.

Feeling two opposite things intensely on a daily basis is pretty damned exhausting.

So here I am. Who knows where I'll be next year.

Blood Pressure Followup #1

2009-03-05T05:40:00.000-08:00

I'm taking Erik in for a BP check today. Update to follow.

Update: Erik's blood pressure was 106/64, which is a much less frightening value than the last check. I can even find this on the normal pediatric chart, which is a vast improvement from last time. Erik was much calmer during the process, although he was clearly not happy with it, and that seemed to help his numbers. His extensive blood work, including calcium, came back completely normal.

Putting the "F" in Fun

2009-03-04T13:28:00.000-08:00

I took Erik to the dentist yesterday. He seemed perfectly comfortable with the idea and talked about the toys he remembered in the waiting room. He was quiet and calm from the time I unloaded him from the Jeep to the time we walked past the receptionist's desk. When we were escorted to the examination area and he was asked to hop up onto the blue dental chair, however, anything resembling calmness in him instantly evaporated. Apparently our prior visits to this office did nothing to lessen his anxiety. His face turned tomato-red, and tears began to squirt from his eyes. He begged us to let him get down.

I looked up at the hygienist, who wore a glazed-over expression of alarm, and I quietly explained to her that Williams syndrome tends to pretty much erase the gene that controls anxiety. She nodded and asked Erik a series of maddeningly perky questions. He continued to bawl and answered no to all of them. I reassured her that it was okay to start polishing, but she ceased her attempts and just sadly repeated, "Oh, he's so cute," like she was apologizing. I kept lamely patting Erik, not knowing what else to do. By this time, a couple of other staff members began dodging each other as they darted back and forth in an apparent attempt to ready a private room for Erik. By this time, we had likely frightened every child in a five-mile radius. As the staff's attention was directed away from Erik and towards a new battle plan, Erik managed to slip off of the shiny chair and wander over to the other side of the room, where a pretty young mother sat with a perfectly quiet toddler on her lap next to a dentist's chair containing a little boy getting his teeth polished by another hygienist. The mother smiled politely at me, and I smiled back and shrugged. I was suddenly aware of the waistband of Erik's diaper and the way he moved in his orthotics. She was very successfully attempting not to stare, but I detected a touch of curiosity. I noted how depressing the situation was for me but marveled at how desensitized I have become. What would have sent me to the car in tears before now just makes me tired. Plain and simple.

I suppose that's a bizarre kind of progress.

What happened next almost sent me into hysterics. Erik approached the defenseless, immobilized boy in the examination chair. The youngster's eyes slowly turned toward my son's approaching face, and their noses threatened to touch. Erik tilted his head to get a better look at the pneumatic polisher and all that was occurring in this stranger's mouth. His neck craned, and he drew himself even closer. The boy looked slightly horrified at Erik's scrutinous stare, and his eyes darted back to his mother for reassurance. After I stifled a giggle and told Erik to back off, the hygienist assured me that my son was doing just fine.

It was at this time that I was approached by a woman half my size with a confident, authoritarian tone. I was slightly put off by what she said next, but I was glad to hear she wanted to try a new approach instead of asking me for the next step. Apparently the private room idea had been mothballed. Dr. Mike bobbed by on the other side of the room divider and waved at me, simultaneously flashing his generous wall of white teeth, looking like a celebrity on the cover of a glossy tabloid. He disappeared into an exam room.

The woman told me that their office schedules "fun visits" for children with special needs. I cringed at this entire phrase but couldn't put my finger on why. Maybe the word "fun" wasn't the F word that automatically came to mind when I had to take Erik to the dentist. Unless there is a margarita machine in the lobby, "fun" wouldn't be my first choice of adjectives. She explained that it would be necessary for us to return more frequently than every six months in order to get Erik accustomed to the environment. My cynicism kicked into overdrive, and I began to daydream about being placed in a sealed crate with a family of rabid raccoons on a daily basis. I can't imagine my hatred of the animals would lessen with repeated exposure, but, then again, I'm not a psychologist. Thankfully, I recalled some of the information I had read years ago about dental visits for people with WS and how a technique like this might help. I attempted to adjust my deteriorating attitude. The woman instructed me she would need to be informed each time we came in, as Erik would need special attention, and that she would handle it herself. She said that she would come in early if necessary. Her confidence began to feel condescending, and I realized that I was probably being a bit defensive.

Erik was invited to choose a plastic toy from a box, which I did for him, as I usually do. I chose a sparkly rubber ball, showed it to him, and stuffed it into the bowels of my purse to join the assortment of toys and stickers Erik shows little to no interest in at each of our appointments. The receptionist scheduled us for a "fun visit" in two weeks, and we said our goodbyes. Erik asked me once again if he could spin the wheels on the wooden bus in the waiting room. Knowing this is something that calms him, I took a seat across from another mother and let Erik go to town. After about 10 minutes, I collected our things and told him it was time to go.

Visiting Darkness

2009-03-02T04:45:00.001-08:00

I love Erik so very much, but he is sometimes replaced for days or weeks at a time by someone I don't know. An unpleasant little tyke who argues with everything I say out of pure spite and rages when he discovers he will not get his way. Which is quite often. In the last week, we have gone from one time-out a day to 10 or 12. I have observed that this insanity usually is paired with a jump in his development and/or a growth spurt. While much of his intensely angry behavior is borderline typical, we have concluded that his reactions to our discipline or even our comments to him are definitely not. This is where things become frustrating and wear me down over the course of an afternoon. My state of mind takes me back to when he was an infant and cried nonstop. This is apples and oranges, I know, but I find myself in the same dark place I was before. Because I now am a veteran of this, I either turn myself off emotionally or further immerse myself in the mindless distractions I indulge in regularly to keep myself sane. This sometimes injures my personal relationships, so I try to keep it to a minimum. However, I admit that some of this damage is permanent.

Erik continues to toe walk to the extreme, although we have been unable to measure any increase in his height because he refuses to let us. With his growth spurt, his language has improved to the point where he can come to me and tell me what's going on in another room. That's new. Yesterday he told me the cat was scratching at the garage door. I told him he could let her in if he wanted to, and he disappeared. I waited a couple of minutes and then went to check on him. He actually accomplished this task (which surprised me, as he detests my cat). He is still generally unable to follow two-step instructions. He has also informed me his diaper is wet after a leak, which is promising, as I am hoping he will eventually submit to using the bathroom. It is refreshing being able to communicate this way. Having a two-way conversation is not only handy, it may actually save one of our lives at some point.

Amazingly, he continues to obsess about the day my car wouldn't start and is visibly anxious every time one of us turns a key in the ignition. He rages at Brian when he cannot watch You Tube videos of tractors, vacuum cleaners, ATVs, or washing machines. As soon as Brian steps across the threshold at the end of the day, Erik is on top of him and won't take no for an answer. He will continue to bombard Brian for hours with the same question and will throw a fit every time, as if he has never heard the word "no" before, after which he is placed in his room to rage without the benefit of witnesses. We do this over and over. And over. And over. And over. And over. Once in a while, he will change things up and ask if I am going to start the Jeep. I stifle a scream when I hear this question for the 50th time each and every day. There doesn't seem to be a solution in sight. Ignoring him or changing the subject doesn't seem to help much, although I usually distract him or ask him questions about something else to get us off the same tired topic. No, Erik, you can't watch tractor videos. Yes, Erik, we will start the Jeep at some point today. Would you like to play with trucks? This usually goes over like a lead balloon with Erik, and we begin the whole process over again.

Urgh.

Last night I watched the Discovery Health special on Kay and Flo, autistic savants. They have the amazing ability to tell you what day of the week it was for any date you provide. They are obsessed with Dick Clark and have met him twice. Just peering into their shared world was amazing and fascinating. On the flip side, however, the family members they live with are worn down and about to snap. Kay and Flo function on an elementary school level and are unable to live independently. They were teased so much that their mother kept them hidden from the world for years. The day Dick Clark's $100,000 Pyramid was taken off the air, their lives were completely disrupted. Worst of all, years ago, their other sister came home one day to find their mother had inserted all three of their heads in the oven and asked for the gas to be turned on. The girl cried and begged her mother to stop, and, thankfully, she did, promising it would never happen again. And it didn't. However, she obviously never left the darkness I visit from time to time. There was nobody to pull her out of this extreme situation. No diagnosis. No services. No relief. While her family members described how depressed, mean, impatient, and alcoholic she was before she eventually died, my heart quietly broke for her. I am not so quick to judge anymore.

I have support for the one child with challenges I have. I'm grateful for a diagnosis, services, and my support group. I'm grateful for trashy movies, my exercise DVDs, cooking, beauty salons, friends, and cheap wine. I'm thankful that putting my head in the oven has never been an option (we have an electric one, anyway), but I admit that there are times when I wonder just how much more I can physically and mentally take. I'm pushed to my limit like never before.

At the end of the day, though, the fits stop. My little boy looks up at me and says, "Cuddle, Mama." I turn on his CD player and crawl into bed next to him for a few minutes. He looks into my eyes and giggles, which is contagious. He seems amazed and incredibly overjoyed that I am there with him, which makes me feel like the most amazing mother in the world, despite all of my profound shortcomings and that dark place waiting for me just around the corner.

Rare Disease Day

2009-02-28T08:59:00.000-08:00

Mi Sonador

2009-02-26T05:21:00.000-08:00

Brian walked me through the front door of the church last weekend instead of sneaking through the side door to find Marla, Erik's aide. Brian carried Erik in his arms past the long rope connected to the happily clanging bell above our heads. Our pastor saw us coming, and his eyes met mine for an almost uncomfortable amount of time. I could tell he was going to say something to me but wasn't finding the words in time. He took my hand and thanked me for my letter, telling me that he was in need of a little inspiration. He admitted to me that it was nice to have something to occasionally remind him why he is doing the job that he does. I really didn't know what to say in return except thanks. I then smiled and placed the palm of my hand on the scratchy, brown tweed of his suit jacket as I passed by. Later on in the service, he showed this video to the congregation. It's amazing to me what is possible and frightening how easy it is to put limits on ourselves and our children. It's even easier to just give up and quit dreaming.

Erik danced into hippotherapy like Mikhail Baryshnikov this week. He was up on his toes all the way from the Jeep to waiting area in the barn. His therapist studied him with her head cocked quizzically and then asked me if he was going through a growth spurt. That doesn't begin to describe how he seems to have shot up lately. I attempted to measure him at home the other day, but the process frightened him to death. He loves to snack, and he seems to be eating constantly these days. I believe that his Achilles tendons just aren't keeping up with the length of his legs lately. This used to scare me, but I have noticed it happens from time to time. All we can do is keep him stretched out and hope for an outcome that doesn't require surgery. Sometimes when he wakes up from his nap I work on his legs before he is conscious enough to escape. I have made a promise to myself that I will cram his orthotics on his legs more diligently this week in order to keep his feet flat.

His home blood pressure cuff arrived this week, but I have not been brave enough to attempt to take a reading without a bag of chocolate candy nearby to bribe him. His blood work to check his hormones and kidney function has been sent, and I am waiting for the results. He is savvy enough about the medical field to understand what happens at the laboratory. I thought he was clueless as he calmly played with the toys in the waiting room, but when they called his name, he burst into tears and pleaded, "I don't want to!" I prepared to hold him down in the chair in the back room and assured the phlebotomists he doesn't hold a grudge. At least not against them.

Right now I am sitting at my desk at this ungodly hour with an amused smile playing over my face. Using the Internet, I just successfully identified the word Erik said when I asked if he wanted a cracker and placed a whole wheat Ritz in his hand yesterday.

After he studied it, he seemed slightly annoyed and hissed, "Galleta."

I see that's Spanish for hardtack. Or cracker.

The Secret Song

2009-02-19T06:20:00.001-08:00

This is a beautiful article about Jeremy Vest. I think a lot of us can see our children in Jeremy, which is why I find him so incredibly fascinating.

Enjoy.

The Secret Song

A Tale of Two Kidneys

2009-02-18T14:40:00.001-08:00

Erik and I headed to the children's heart center today for a blood pressure check before his renal ultrasound at the hospital. When Erik approached the nurses' station carrying his filthy stuffed dog, the woman behind the counter went into the next room and announced, "Stinky Dog is here for his blood pressure check." Today his blood pressure had come down substantially into about the 70th percentile.

The blood pressure cuff is extremely upsetting to Erik, and while he was being calmed, one of the staff members motioned for me to talk quietly with her in the hall. Erik's photo from a prior visit is tacked to the bulletin board above the nurses' station. She told me that a young woman with Williams syndrome came in recently and pointed Erik's photo out to her mother, asking if she thought Erik had WS, too. After they studied his face, they apparently both came to the conclusion that he did. Once again, I have likely crossed paths with this other family I know of but have never met. It's strange. I can never confirm this is the same woman, as privacy laws do not permit the release of her identity, but it is strangely comforting to know she has been in the same exam rooms and waiting rooms we have. Maybe someday we'll meet.

From there, Brian joined us, and we took the stairs leading to the long hallways of the hospital. After we told another woman in floral scrubs working in the imaging department who Erik was, we sat in comfortable faux leather chairs and attempted to get Erik to use his "inside voice" to let the man across from us continue to sleep. I panicked when I realized Stinky Dog had been abandoned somewhere in the building and made a note to myself to locate him after the study. Thankfully, Erik did not notice his absence.

We were finally led to a tiny waiting area separated from a glossy hallway by a saltwater fish tank. I made myself comfortable in the same chair I sat in while I was miscarrying my first baby. The same chair I sat in after I lost my second baby. And the same chair I sat in a handful of times when the doctor wanted to take a look at Erik inside of me to make sure he wasn't leaving my body like the others did. I felt a twinge of anxiety when I sat down, which was quickly replaced by a horrible craving for Chinese food. That tank with all of the fish bobbing in it has the same effect on me. Every time.

A boy of about 12 sat in the corner quietly playing a handheld video game. His mother held a computer on her lap and played solitaire. They talked about another family member who was apparently hospitalized. Erik approached them and said hello. He asked them both if they vacuumed, and the woman laughed and said that she did but that she wished her son did it more often. She introduced her son and asked Erik's name. After a few minutes of conversation, she looked at me with the very same slightly confused, intrigued look on her face I have seen many times on faces after Erik has gently held a stranger's hand and looked deep into their eyes.

She asked, "Is he always this happy?"

I smiled and told her that he was most of the time. I enjoy the reaction Erik gets from strangers. He's different, but at this point, people can't seem to put their finger on exactly why.

A friend or family member came into the small area with an update on their loved one, who apparently was hungry and wanted to sit up and eat with them in his room. Erik approached the newcomer and held her hand gently. She smiled at him and answered his questions about vacuum cleaners, looking to us periodically for a translation. They then all left us to eat lunch and wished us a nice day.

An ultrasound technician came out to get us and lead us around the corner into the small, dark room I am so familiar with. I hopped up onto the table by the machine and invited Erik to join me. He immediately began to cry. When the technician's attempts to calm him down failed miserably, I explained he was missing the gene that controls anxiety. I then gave him a crash course on elastin and renal artery stenosis in Williams, and he nodded his understanding. He mentioned another connective tissue disease, and I felt comfortable with his response. I finally was able to hold Erik still while his back was smeared with clear, warm jelly and the ultrasound wand was held closely to his body. Brian made faces at Erik, and I pressed my face into Erik's hair. Images were successfully obtained of the inside of Erik's lower abdomen. Erik was obviously very anxious, but the tears stopped. He repeatedly asked if we were all done. I told him no but promised him chocolate when the study was finished. When the technician saw the bladder and asked Erik if he needed to go to the bathroom, Erik was obviously deeply insulted. I giggled. Any reference to using the potty makes Erik very irritated.

The technician left us and let the radiologist examine the images while I went into the little dressing room and fixed the wild hairdo I had been afflicted with from holding Erik down on my side for so long. The tech eventually returned and reported that everything looked healthy with no evidence of stenosis or stones. Erik was asked if he wanted a sticker, and he said that he did not. He was already talking about locating the car. We left the department and found our way back down the hall. Stinky Dog was sprawled atop the registration desk waiting for us. On our way back out of the building, I ran back into the heart center to pick up Erik's heart-shaped foil balloon, which was still tethered to a chair in the nurses' station. I gave the staff a thumbs up and said I would be talking to them soon.

We exited the place out into the crisp air and sunshine, knowing all was very well.

At least for now.

Imaging Study

2009-02-17T08:45:00.000-08:00

Erik is scheduled for another blood pressure check with the cardiologist and a renal ultrasound at the hospital tomorrow around noon. Not only that, we are getting some blood work for the kidneys. Amazingly, I didn't have to suggest either of these things. I also did a little research and purchased a home blood pressure cuff (for the whole family to enjoy at this point).

For those of you who are curious, his systolic reading yesterday was 142, which I agree is "pretty high," as it is not even close to being listed on my chart for a boy his age and height. His diastolic reading was 70, which falls into the 95th percentile and is also a little high. His cardiologist says his pressure has increased over time.

Hypertension Part Deux

2009-02-16T16:16:00.002-08:00

I took Erik in for a blood pressure recheck today, and it was once again too high. When I asked how high, I was told, "Not extremely high, but it's pretty high."

Uh.

Pretty high?

Please be more specific. Like, explode your eyeballs high or experiencing mild road rage high?

After I was given a very polite brush off and told I could come back in yet another month, I explained that I have watched Erik's WS peers undergo surgery, have strokes, and take antihypertensive medication. I explained my fears that we have not gotten very accurate readings in the past and that I suspect he has been hypertensive for a while. I was told "not to worry too much."

I calmly explained that I wasn't "too worried," but there is certainly a lot I don't know about what's going on in Erik's body, and my alarms have been going off. I explained the issue of renal artery stenosis and the fact I have never seen images of his kidneys. They haven't even done all of the recommended lab tests on him since his diagnosis, despite the fact I gave them a list of them. I recently gave them the list again. Although I adore Erik's pediatrician, I would give my right arm to have someone anywhere on the West Coast who could tell me what the plan should be and reassure me that Erik was in good hands. I'm sick to death of being told I'm the "expert" by physicians who admit they know next to nothing about this syndrome. I have a sneaking suspicion she knows very little about elastin arteriopathy, which 100% of people with WS have, or the high incidence of renal artery stenosis. See, my kid is 4, and his arteries are already hard. Sure, the the last couple of readings could be nothing, but color me a little concerned and in need of more information. I don't believe I am overreacting in the slightest. I was told they would start a referral to the cardiologist. I thought that was a bit over the top but decided I would at least like to speak on the phone with a specialist. Just for a little friendly advice.

I called the children's heart clinic here and identified myself to the woman who answered the phone. She brightened when she heard Erik's name, and I found myself smiling. The cardiologist is going to call me tomorrow, and I hope she can tell me what the best next step should be. I can certainly wait another month for another reading. I can schedule him immediately for a scan. I can stand on my head and sing "Sweet Home Alabama" in my brassiere and panties. I don't care what the plan is. I would just feel better being told what to do for once by someone who uses an authoritative tone, not the faint, buoyant whine of question marks and a pause for my response.

I just want someone else to take the reins for once.

Party Cleanup

2009-02-15T18:59:00.001-08:00

"Don't forget to laugh!"

-- Sue Vest (Mother of Jeremy of HYN)

So the most amazing thing happened.

I woke up in so much pain I wanted to chop my throbbing noggin off, but my headache completely subsided after its brutal reign of three and a half days. I was suddenly able to clean the house and cook some appetizers for the "How's Your News" party. After I was done, I slipped on my brand new blue and yellow HYN football jersey, which somehow made it all the way from the bowels of MTV in New York to my mailbox in just three days. I primped myself until I looked fairly lifelike, and most of the people I invited showed up at our door right on cue. We sipped bubbly champagne, feasted on delicious food, and gathered around the television to watch last week's season premiere of "How's Your News." I was quite pleased to be surrounded by friends, family members, a member of my moms' group, and Erik's therapist from early intervention who is now a permanent part of our family.

And the show? I loved every second of it.

I tend to analyze everything to death, but I was instantly entranced. I didn't analyze the content or the format while I watched it at all. I immediately fell head over heels in love with the HYN interviewers. I didn't think about Williams syndrome, Down syndrome, or any neurogenetic condition. I didn't even focus on the wonderful, rare opportunity I had to gaze into the strangely familiar faces of strangers marked with the elfin features I have learned to recognize as I have studied my son's syndrome over the years. I simply found myself immediately comfortable, and I laughed loudly along with the others in the room without a second thought. It was soon clear that the show seemed a heck of a lot less focused on disabilities and more on the experience of being human. About watching for the potential bizarreness that occurs when two very different people happen to collide and communicate. I did end up hungry for more sound from the HYN band and hope to see more music in the next few episodes. Jeremy's enthusiasm sparked by meeting the drummers from various bands and the unexpected gift of a guitar that Brendan, another young man with WS, received from pro skater Ryan Sheckler left me feeling very warm and fuzzy indeed. And that Susan! Well, she's just frickin' FUNNY. I loved them all.

After the show, it was suggested that I play the 60 Minutes video titled "A Very Different Brain" about Williams syndrome, so I popped it into the DVD player. I was anxious to see it again, knowing we would recognize some of the people we met at the convention. We all had a great discussion about WS, "How's Your News," disabilities, our culture, and how far our family has come. We pointed out people we had met or read about. We laughed a lot. Some of us even cried a little.

I remember feeling confused and a little sick to my stomach when I heard the term "Williams pride" for the first time at the convention last summer. I wondered if anything so damned devastating could ever spark a sense of happiness or pride in me. Sure, it sounded good, but I was skeptical. Packing for the convention felt a little like preparing for a funeral in a sense to me. It meant I had to accept something I didn't want to and officially let go of the old hopes and dreams I had forever. Attending the seminars on WS meant shedding the soft scraps of denial I clung to for comfort. In reality, it scared the hell out of me. However, as the convention progressed, I was transformed by the entire experience. Walking through the front door of the hotel for the first time and watching the young people with WS lovingly envelop my son in their arms brought tears to my eyes. It was the most amazing, unexpected sight to see. He held each of their hands and laughed along with them, like they shared some sort of secret joke and had known each other forever. As time went on, I took a really good look at the people around me and realized we were indeed celebrating WS. In a big way. There were T-shirts for sale to prove it. I witnessed gallons of grief-heavy tears shed around me by parents a lot like me over a few days, but when they dried, there were a lot of grins. In the end, I came back a different person. My own tears finally ceased, and I came home wearing a smile.

Today was a real celebration for me. I didn't realize it, but it ended up being another milestone. I was really excited and proud to be the mother of someone who just happens to have Williams syndrome, a devastating but amazing genetic twist of fate that has brought so many wonderful people into my life and reinforced the relationships with the people who were a part of my life before the diagnosis. These are the people who sit on my couch and drink champagne with me, helping me celebrate the beauty in something that racked my whole soul with grief three years ago. These are also the people who are always with me, even if they are miles away. I certainly wouldn't want to be on this roller coaster alone, and they have willingly strapped themselves in next to me, ready for the crazy ride. Once in a while I put my arms in the air and scream loudly, sounding halfway terrified but oddly triumphant. It's exhilarating. I felt like that today.

Three years ago I thought I would never laugh again.

I couldn't have been more wrong.

Party Day

2009-02-15T05:45:00.000-08:00

My "How's Your News" party is today at 3 p.m. I wish my head didn't hurt so much.

Wear and Tear

2009-02-13T16:41:00.000-08:00

I'm getting to the point in my illness where I am at least going through the motions. I work out. I put on makeup. I wear real clothing that isn't made with fleece or Spandex. But I continue to feel like the walking dead. My head has been pounding for two days straight.

Erik seemed to be limping around the kitchen island yesterday. I told him to stop, and I sat him down on the floor. I turned the bottoms of his bare feet up to examine them and gasped. Not only is the skin on his toes so thin that it wears away on a regular basis, the skin covering his soles had worn out from simply running around the house. This has never happened before. In fact, it was so thin that his feet were reddish-purple and almost hot where they had been in contact with the floor. His soles looked like they were about to burst, and I hurt just looking at them. He hadn't given me one word of complaint, but he didn't protest when I covered him in shoes and socks. I have to keep shoes on him as much as possible to avoid the grisly bloodbath that occurs when his skin does disintegrate. Although it wears quickly, it heals just as fast underneath a layer of protection. On top of everything, he remains covered in eczema where the skin is a little thicker. His arms and legs feel like the surface of a freshly-plucked chicken, bumpy and dry, no matter what preparation I use or dietary change I make. Neither condition has improved in the slightest with time. Although I continue to go through the motions with greasy balms and lotions, I have really given up fighting it, as it doesn't seem to bother him or his doctor.

His skin just seems so fragile. And he seems so darned tough.

Out Sick

2009-02-09T14:13:00.001-08:00

The whole town seems to have a bug of some sort. Erik has recovered sufficiently to go to daycare, and Brian and I are fighting it now. I was in bed all weekend. I am itching to write SOMETHING, but unless I describe my wacky febrile hallucinations, I don't have much to say. While this is tempting, as it might prove entertaining for some, I fear that exercise may reveal a bit too much about myself for my own comfort.

I'll be back soon. I promise.

The Sound of Mucus

2009-02-03T19:03:00.000-08:00

Random Thought of the Day

Scent of Eucalyptus = Yummy

Scent of Eucalyptus + Poopy Diaper = Nasty Stench

Erik is sick with his first chest cold. I'm not feeling so hot, either, and have been up since 1 a.m. with my usual anxious, angry insomnia. We both smell like Vicks VapoRub. I did manage to indulge in two independent films while the guys were asleep during the dead of night, and that was almost fun. Erik and I eventually went out to drop off work and go to the store, and I bought some Ben & Jerry's Cherry Garcia frozen yogurt, which is something I used to do years ago when I was in a foul humor. I wandered down the cleaning aisle and hoped to find a scented candle that struck my fancy but was too picky/olfactorily challenged to select one. I ended up with a very bizarre collection of items in our cart and couldn't remember exactly why we were there. Erik said hello to another family while we were out. They seemed to know him, but I had no earthly idea who they were. Being accustomed to his celebrity status, I let him do the talking. Later on he asked the very quiet, cranky man checking our groceries to give him a high five, which he did, much to Erik's delight and my surprise.

We did get to enjoy a family Superbowl gathering last weekend. The neighbors also joined us for some cocktails, burgers, chicken wings, and friendly gambling. Erik stood motionless in front of the television screen while Jennifer Hudson sang the National Anthem. Every once in a while a song will really seem to touch his soul. I find him in front of the stereo from time to time in a trance. Each muscle in his body seems to freeze. It is extremely unusual for Erik to be still while he is not unconscious or being held down. When the song was finished, he turned around smiling and said, "Again!"

I might need to purchase the Dreamgirls soundtrack.

Life drags on. I don't have a lot to report. My friend with ALS has been receiving IV antibiotics at the hospital for yet another lung infection, and he has horrible allergic reactions to the drugs. Erik has learned to say, "Watch this, Mama!" My feral cat and I spent Erik's nap time cuddled on the love seat this afternoon, but sleep never came for me. I'm off to drug my body into resting, and I hope tomorrow is better. I'm guessing Erik will take advantage of a rare sick day and stay home from school and therapy. We'll do this all over again. We are grouchy but really enjoy each other's company, in sickness and in health.

Erik and Brian, Ready for the Big Game

Rob, Lisa, Me, Mom, Bob, & Susan Enjoying Things in 3-D

Esta Bien, Amigo

2009-01-30T11:46:00.000-08:00

Taking Erik to school in the morning is always an adventure. I never know how I will feel when I walk out the school's front door without him. The old depression that descended on me as soon as I stepped inside faded long ago, but I still occasionally feel a little sad we're still there. These days I am generally very comfortable in the confines of our special education bubble, but I know that this is the last year that we will be enclosed in it full time. Next year Erik will likely spend just a portion of his week in special ed preschool and the remainder in a regular preschool with typical children to prepare him for his transition to kindergarten and the real world.

On Wednesday morning I stood at the front desk at the school taking care of some paperwork when the metal doors clanged open and revealed a teacher struggling to carry a flailing, tear-streaked boy who had been freshly extracted from the school bus parked outside. He was emitting the most desperate, frightened scream that reached a decibel level I have not known before. As they made their way down the hall to the classrooms, the noise only seemed to intensify and bounce off every bare surface in the hallway. I finished talking to the clerk at the front desk, gathered my things, and quickly made my way out into the sunshine, hoping the poor little boy would not blow Erik's eardrums with his yowling or transform him into a slumped over, trembling, frightened mess. I walked up the hill to my vehicle and didn't look back.

Today we entered the classroom, and Erik greeted an aide named Martha by brightly saying, "Hello, Ms. Hola." Martha is Hispanic and bilingual, and Erik formerly believed her name was actually "Hola," as that is the first word she would say to him each morning at school. He seems to have caught on but still enjoys this interaction and refuses to use her real name most of the time. Martha said, "Hola, my little amigo," and Erik giggled.

Sitting on the shoddy, avacado-colored couch in the back of the room was a father with his two children, one of whom I identified as the frightened little boy with the amazing lungs I encountered in the hall earlier in the week. The man smiled at me, and I smiled back. Erik approached all of them, held their hands, and said, "Hello, good friends." Martha said something in Spanish to the father about Erik knowing some of the language, and he smiled down at Erik, who began to chat a little with them using the Spanish he now knows. The adults in the room giggled. Erik was using words I had never heard before. On my way out the door, Erik's teacher stopped me and quietly explained that they had previously calmed the upset boy using Spanish phrases, and Erik remained by the child's side despite the noise, repeating each word carefully and correctly, seeming to understand that the words were soothing and wanting to help. His teacher was amazed.

There is apparently a bilingual preschool in the neighborhood, and it has been suggested to me that Erik might enjoy some immersion in Spanish. My mind was a little blown, as I never thought of this before, but Erik absolutely loves learning new words and loves language. Of course, that would mean I would need a little immersion, too.

Rosetta Stone, here I come.

A Very Strange Love Story

2009-01-29T19:18:00.000-08:00

For those of you who asked, I finally mailed that letter to my church. It took me well over a week to do it. I'm not optimistic about seeing any results but insist on making my presence known and educating as many people as I can with the words that seem to come to me naturally. The fact that it is easier for parents like me to isolate themselves at home with their personal challenges so they don't inconvenience anyone is simply not acceptable to me anymore. And that is something I feel very passionate about. I feel like I came across the article on inclusion I enclosed with my letter for a reason. It illustrated my concerns perfectly. I guess I refuse to just go away anymore.

I have more than a little fire in my belly.

I recently had the opportunity to be interviewed by our local paper about our journey with Erik, and I accepted. The article will be featured in the health section next Thursday. The topic is about people who came up with their own diagnoses using the Internet. A woman was apparently interviewed who diagnosed herself with a horrible ailment, but it turns out she didn't have it at all. And then there's me, an experienced medical transcriptionist who considers herself the "Google Queen."

In the end, after we were finally told something was officially wrong with Erik by a medical professional and that we needed genetic testing, it took me less than 30 minutes to diagnose my son correctly with the help of the clunky electronic box humming away on my desk. In my career, you only need to know what key words to type in to discover exotic diagnoses and laboratory tests that physicians mumble but expect you to type into medical records perfectly. I very quickly narrowed down a list of genetic abnormalities to determine our worst case scenario, and WS was number one on my list. I remember telling my friends the week before we received our official diagnosis that I was most afraid of Something Called Williams Syndrome. The local reporter interviewed me on the phone yesterday, and I explained how I came across a cartoon caricature that illustrated some very exaggerated facial features of Williams syndrome. He asked if I could find that drawing again, and I asked him to hold for a minute, not knowing if I could after almost three years.

My fingers automatically typed: "facial features Williams syndrome"

There it was. That awful, clown-like drawing that rocked my world and broke my heart forever. I hadn't seen it since that horrible day I realized what we were dealing with. I told him that I held up Erik's photo to the ones on that web page, and the mysterious puzzle pieces of the last 17 months of our kid's life crashed together all at once. Everything suddenly made sense. I remember trying to talk myself out of my suspicions but that I finally had to move the portrait of Erik off the wall above my desk while I worked because I just wasn't ready to believe it was true.

I consider telling our story a giant step in my healing/grieving process. I can now semi-objectively explain things to others who know nothing about me or what we have gone through and feel proud of what we have overcome and accomplished. Hell, I am proud of what we have SURVIVED.

Today I got Erik up from his nap, and he joined me on the couch with his favorite fleece blanket and the infamous, progressively flaccid Stinky Dog. I pressed my lips tightly against Erik's forehead, savoring the wonderful heat and scent of him, and I concluded that he is the subject of the greatest love story of my life. Just like any mother would say. Except our story started out with an incessantly screaming infant, doctors' visits, doubting my skills as a parent, genetic testing, medication, and sleepless nights wondering what the hell we had gotten ourselves into, all culminating in the sickening realization the universe had randomly chosen to strip away some of the precious parts of ourselves written on the genes we attempted to give our son. All to the soundtrack of some of the people around me telling me that God hand selected me to be the mother of a child with special needs because I was strong. That Erik's condition was a wonderful gift. That I had essentially been singled out for this while I was forced to watch other mothers have babies with all of the parts they were intended to have.

I suppose that's what lit the pilot light in my belly to begin with.

In the end, the pain has dulled to an almost tolerable, familiar level. The struggles are different, and I am more effectively equipped to overcome them. And, most amazing of all, the love Erik has returned to me has inspired me to shout our story from the rooftops. It is turning out to be a beautiful thing, indeed.

A photographer from the paper arrives tomorrow to take our photo together.

Look What He Can Do Now

2009-01-27T19:48:00.000-08:00

Barbs

2009-01-27T04:33:00.000-08:00

The children around us are growing up now. They have their own distinct personalities, and they are developing some clear interests in the world. This is amazing to watch. However, I have come to yet another realization about having a child who isn't so typical and still demonstrates a delay of a year or two.

Typical kids seem incredibly MEAN to me.

Sure, Erik's a pill to me and his father on a daily basis. However, he has quite obviously not yet developed the same assertiveness and aggressiveness that other children seem to have programmed in them for their survival. He doesn't know what it means to be competitive with his friends yet. He doesn't have a jealous bone in his body. His remarks about other children do not seem cruel like the ones I am hearing from other kids. This seems to have occurred overnight. Either I am incredibly deaf to what is coming from my son (a distinct possibility), or he just hasn't developed the sophistication required to sound like the others do. My money's on the latter.

It seems that lately I am shocked on a regular basis by what comes out of the mouths of typical children about Erik, especially now that his differences are becoming obvious to them. I don't believe all of these statements generated come from a mean spirit, but some of them seem to be taking on a distinctly nasty flavor. These things might not bother me at the time, but later I think about them and feel angry and sad for Erik. This probably stirs up memories of how difficult school was for me at times. I wonder what's to come in the future. A friend of mine reminded me that this is perfectly normal behavior from typical children.

I guess I wouldn't know.

HYN Update

2009-01-24T15:18:00.000-08:00

There seems to be a lot of talk about the show "How's Your News?" on the WS message boards. Some people are obviously uncomfortable with the concept. I admit that I was at first. I mean, what if people thought the show was funny and laughed?

*GASP*

It's a risk, for sure, to shine a light on what makes some of our children and peers different. To create vulnerability by not knowing how people will react to being interviewed by someone with a disability. But what if, along with the differences, viewers recognize a bit of themselves, too? Might it cause them to treat others a little differently in the future? I think what ends up being really exposed in the end is what's underneath the skin of the people being interviewed. And that makes some people really uncomfortable.

This show is not for everyone, and I respect that. I definitely share the same concerns about the exploitative nature of some forms of entertainment. There is some really awful stuff out there I choose to avoid. However, the more I learn about this particular show, the more I fall head over heels in love with it and the people in it. I hope it opens a few minds and hearts. Maybe it will even demystify and humanize disabilities in general. Who knows. I think it really holds a mirror up to how our society views and interacts with others, disabilities or not.

What it comes down to for me, though, is that just watching these people have a fabulous time makes me smile so much my face begins to hurt.

Here is the new trailer for the show, which airs February 8th on MTV. I have decided to record the program and throw a premiere party on Sunday, February 15th at 3 p.m. Cocktails and appetizers will be provided. If time allows, I will share the original documentary which inspired the TV series. Send me an e-mail if you would like to attend.

The Life That's Chosen Me

2009-01-23T15:34:00.000-08:00

Thanks to my very amazing friend Kelly, mother of beautiful Tyler, for this really touching song that says the things we would likely never dare say out loud. It's funny how sometimes you get just what you need at the moment you need it. Hopefully somebody out there might need this, too. Happy Friday.

Four-Year Visit

2009-01-22T17:16:00.000-08:00

I took Erik to the doctor today.

An adorably chubby girl with curly blond hair sprinted up to us as we sat in a quiet corner of the waiting room, only to tease us both by tossing us smiles and running away over and over. I noted that although the waiting room was fairly quiet, I am no longer struck by how advanced other children seem in this setting. Erik keeps me entertained and draws me into him, so the rest of the world seems to disappear these days, anyway. Despite our interaction, he never failed to say hello to each person who passed. He greeted them hopefully, using his doctor's name, although I explained we would not see his physician until we were ushered inside. We amused ourselves by making up silly-sounding words like we always do, taking turns and laughing at each other when we came up with an especially good one with a jaunty pronunciation or accent. Erik's new words caused me to emit my big, ugly laugh in front of strangers. I declared Erik the winner of our game.

The nurse called Erik's name, and we were led through the frosted glass door at last. Dread filled my core as we approached the area where Erik's height, weight, and blood pressure would be measured, just as it had been each time since he was a screaming, red-faced infant. I picked him up and placed him on the scale's platform, which he tolerated surprisingly well. Thirty-seven pounds. For the very first time in his life he let me back him against the wall against a crude, plastic ruler. He allowed the tab to be lowered down on his head for a measurement. Height 41.5 inches. Erik's weight is at the 50th percentile, and his height is at the 60th percentile for typical children. Not bad. Next, he was placed in my lap, and a blood pressure cuff adorned with drawings of soccer balls was affixed to his arm. By this appointment, the nurse seemed very familiar with Erik's sensitivity to noise. That was refreshing. She even let him press the button on the electronic sphygmometer. The cuff tightened, and he sat quietly. Being unfamiliar with pediatric medicine, I asked if his blood pressure was normal for a child, and the nurse assured me that it was. We then stood up and saw Dr. G in the hallway. She greeted Erik like an old friend, but a nearby baby immediately began to shriek. I said, "Uh oh," and excused us both to retreat behind the doorway of our exam room.

The room was familiar. It was decorated with a strange mix of photographs. Cheaply framed prints of lions, tigers, and leopards graced the walls, and a fluorescent light fixture above us was covered by a brightly lit photo of a handful of fighter jets streaking across a span of blue sky. Erik thought the planes were birds. He then quickly spotted the fire alarm and began obsessing over the noise it might suddenly make. Nurse Cynthia joined us once again and expressed her amazement at the progress in Erik she had witnessed after our absence of over a year. She reminded me she had cared for one other girl with WS and admitted that this patient had made a permanent impression on her. She reported that because of WS, the girl was almost emotionally overcome by the sound of other patients crying. I sometimes feel as if we are following in this family's footsteps, knowing their identity but never having met them. I told her that Erik was beginning to feel the same way about other people in distress. He is a sponge for any emotion around him. Especially mine. I made a weak attempt to smile broadly at my kid.

I brought a list of lab tests I wanted done on Erik and explained that I had not been as strict as I wished I had been about them in the past. I expressed my concerns about his calcium level now that we had him almost completely off dairy and the fact we could not supplement him because of hypercalcemia. She asked me the dreaded questions about development, and I answered almost all of them by indicating he met or exceeded the typical goals for children his age. He failed miserably on just a couple of them. I couldn't help but be awkwardly conscious of the fact he was still wearing a diaper. I'm only aware of that now because other children have now begun to make rude comments about it.

The doctor soon came in and examined Erik. She checked out his heart, lungs, eyes, mouth, and ears. When she asked to see his penis, Erik opened his mouth as wide as he could. I laughed. In the end, he allowed her to examine everything, even if he didn't know what his parts were called (after I said the word "crotch," he was on the same page).

She then asked me how I was doing. I tried not to physically recoil.

She asked how my marriage was. How my husband was doing. With all of the lists and questions about Erik I had prepared, I felt horribly raw and uncomfortable talking about ME. I fought the urge to bolt from the room. But I didn't. I put on a brave face and fought unexpected tears from nowhere. You see, nobody asks me if I'm okay anymore, and it caught me off guard. The truth is, I'm not completely okay. I never will be. Every single day is difficult, but I'm comfortable with that now. I suddenly realized what my author-friend with the disabled daughter had meant when she told me months ago that she stuffs a lot of the feelings she has about life down deep inside. I thought that was just awful at the time, as I was wearing my heart on my sleeve at that moment, but now I know that there are some things I will never "get over" and prefer to ignore. I am doing just that now. There are some things I just don't feel like talking about or thinking about now and probably never will. It just doesn't do me any good. I then told her that I had my life back. That I was 30 pounds lighter. That I had joined a support group. That I was enjoying some outside interests again. That I was not remotely interested in having another baby. She asked me what she could do for us, and I said nothing. Believe me, I would take her up on it if there was something she could do to improve things. The truth is, we're on our own. And we are doing fine.

Fine enough, anyway.

Sometimes you just have to spackle on a smile and move on.

What happened next took me by surprise. She told me that she was concerned about Erik's blood pressure. Unfortunately, the nurse had been wrong. It was just too high. We were instructed to come back in two or three weeks. I asked her about the renovascular disease that often accompanies WS. I wondered out loud if I was being paranoid but that I didn't believe we had ever gotten an accurate blood pressure measurement before with Erik's anxiety and squirming. Today he had been perfectly still. She assured me that I was the expert on WS and that paranoia was not in today's equation. She reported that it could be nothing, or things could be out of whack, like his kidneys or hormones. I admitted that because Erik was healthy, I was waiting for the other shoe to drop.

We would soon find out.

She said her goodbyes, and Erik held onto her knee and said, "You're so great." Nurse Cynthia came back into the room and asked what lab tests we wanted done. With two shots in the thigh on today's agenda, I decided being strict about labs at the moment could wait.

One thing at a time.

After I held Erik's body down as the nurse inserted the needles and he begged me to take him home, we headed out with stickers from the nurses' station in hand. I told Nurse Cynthia that holding grudges was simply impossible for Erik.

She told me, "Congratulations," referring to what she had witnessed in my child on today's visit.

And I almost welled up again.

Loss

2009-01-17T15:54:00.000-08:00

An amazing mother in our support group held her son in a hospital bed as he slipped away last week. I wish I had something to say, but there are no words. What I can say is that I am certain she never once gave up on this beautiful little boy. Not once. She put her heart and soul into his fight until the very end.

I hope she always remembers that.

Attempting Courage

2009-01-12T15:11:00.000-08:00

I'm feeling nervous. I wrote the following letter to the pastor at our church. Hopefully I will not chicken out before I deposit it in the mailbox. I have enjoyed our anonymity in our congregation, but as time goes on it is clear that soon everyone will know who we are. The article I enclosed on integration in a church setting is no longer available on line, but I would be happy to share it with you upon request.

January 12, 2009

Dear Steven,

I attended a trivia/brainstorming session for parents last year with my husband Brian. Our son Erik was born with a genetic birth defect called Williams syndrome, and although we tried on a few occasions, we were unable to attend church because of his disabilities.

First of all, I would like to express how grateful we are for the help we received. Janet did a fabulous job of matching us up with Marla, and she has been lovingly caring for Erik during church services every other week. Erik’s brain does not process loud noises well, and they seem to cause him physical pain. For this reason, being in the nursery with crying babies was absolute torture to him. In fact, on one previous attempt to attend church, I left during the service sobbing with our agitated little boy, feeling like we did not fit in anywhere. Now that Marla is on our team, she has introduced Erik to the church experience, and he is thriving there. Lately he has been able to sit with his peers during the children’s moment with Marla. It is not often that things feel “normal” to me, but this simple thing has given me so much joy. I had tears running down my cheeks the first time the door opened and Erik was led to the front of the church. Just like the other children.

The purpose of this letter is twofold. First, I would like to make myself available in the event there are parents who are struggling with a disability in their child. I am concerned there may be others in our community who are feeling alone like we did. We were isolated for years until I finally spilled my heart to a deacon who called to ask how things were going. I am also now part of a local support group in town and consider myself an expert at having coffee with others.

Second, I would like to give you this article that beautifully illustrates the challenges we have been experiencing and will likely experience in the future. It even describes the behavior of a young boy with Williams syndrome. If you do not know Erik yet, he will definitely make his presence known to you in the future. Erik’s syndrome gives him what some have labeled a “cocktail party personality.” He knows no strangers and will approach anyone. If I do not intervene, he will approach people on the street, reach up to them, and hold their hands. While this is terrifying as a parent outside our home, I believe a church environment may be a safe, supportive place for our family to just BE without the constant fear. I do not look forward to the day he realizes he is different or hears someone call him a “retard.” That day will be very difficult for Erik, but it is coming, and his belonging to a group will be even more important. Not everyone believes his odd behavior and friendly mannerisms are charming, and that has been a painful realization over the past few months for me.

My hope is that one day Erik will be able to sit with us in the sanctuary and that the people around us will at least attempt to accept who he is, differences and all. I plan on teaching him to be a polite young man who is respectful and keeps disruptions to a minimum, but I know he will struggle. Only time will tell what is possible for our family. However, it is so much easier to dream knowing we have support from our church family.

Finally, that dark day I left the church crying my eyes out, there was a Christmas tree outside the front doors you had invited us to take a label from. The wind was whipping things around, but I managed to free one without letting it go. The word on it was “COURAGE.” I now unpack it from my box of Christmas decorations each year and place it on my own tree to remind myself how far we have come and what is possible if we dare to dream it.

There is nothing left to say but THANK YOU.

Very sincerely,

Nancy (Erik’s Mom)

It's Okay, Honey

2009-01-11T06:25:00.001-08:00

I strapped Erik in the Jeep one morning last week to take him to school and then indulge in a hair appointment at the salon across town. I realized that after I had vacuumed up the petrified fruit snacks from the back seat of my vehicle the day before, I had forgotten to turn one of the dome lights off. Because of this, the engine would not fire up. Instead, it tried its best to turn over, creating repetitive waves of noise that accompany a slow, low-voltage death. I bit my lip to keep expletives from escaping and smacked the steering wheel. I glanced over my shoulder at Erik, and the flesh of his face had molded into scarlet crinkles. Tears were squirting from his eyes. It was obvious the combination of strange noises coming from the car he loves so much and my sudden drop in mood had sent him into a hysterical fit. I told him to hold on and tried a few more times to get the thing started while he shook with fear. I rolled my eyes and pulled the key from the ignition, sagging back into my seat. What a way to start the day.

Between heaving sobs, Erik seemed to attempt to reassure himself. Strangely, he seemed to be using words I might have said to him in the past during an upsetting situation.

"It's okay, honey. It's okay, honey. It's okay, honey."

It was strange to hear him chanting this phrase over and over. I felt horrible. Finally, I gave up on the whole thing, walked around the vehicle, and opened his door. He looked up at me. Tears continued to roll down his face. He asked to go to school. I said that I would try my best to get us there but asked if he wanted to run around outside for a bit. He seemed relieved. After I extracted him from his car seat, he ran off into the front yard while I called everybody I could think of who could transport us across town in time.

I heard Erik's voice again from the yard as he sprinted around on his long, clumsy legs. His toes caught on rocks and cracks in the sidewalk, threatening to topple him over, but he defied gravity and righted himself repeatedly as I winced each time. I yelled at him to watch where he was going. I listened more intently with the ear that wasn't pressed to my phone and heard him continue to reassure himself. He seemed to be chanting once again.

"I'm so happy today. I'm so happy today. I'm so happy today."

The agitation lasted for a couple of days before it began to fade. He asked me hundreds of times if the Jeep was broken. Finally, the questions ceased and morphed into repetitive statements. He still insists on knowing which car we will be driving when we leave the house, with or without him.

As time goes on, I seem to be witnessing the birth of little obsessions fueled by his blooming anxiety.

Crash and Learn

2009-01-08T14:00:00.000-08:00

My kid just crashed his tricycle for the very first time. I am so very proud. It was an impressive sight, and he ended up tangled in the wreckage. However, he got right back on it, and the event was an exciting topic of conversation over his afternoon snack. He is going fast enough now to require his helmet, which has been gathering dust in his closet, as he never did anything more than turn the trike over and spin the wheels for hours at a time in the past.

I think my days of reading quietly outside may be coming to an end. Finally.

Stale

2009-01-06T06:58:00.001-08:00

I walk into the cinder block building that housed our movie theater when I was in high school. The place closed down years ago. The ruby-red carpeting has been peeled from the floor like a dirty scab, and the light fixtures that looked like electric balls of yarn are history now. While this might seem like an improvement, not one shred of personality remains. The cement floor has been polished to a glossy, colorless sheen, making me feel like I'm walking on water. I pass the empty space where the ticket counter used to be and head down the hall to the bathroom across from a new tanning salon. A woman in jeans and a flannel shirt totters behind the counter in six-inch heels like a baby deer. The smell of the sprays and lotions they slather on their slow-roasted customers fills the air and sparks memories of my old Barbie perfume factory.

After I use the facilities, I head back down the hall to a small glass door, behind which is now a sports bar. After the conversation lulls and the heads turn my direction, the patrons go back to what they are doing. I have apparently been accepted into the fold. I walk past the long bar and the row of overweight men wearing baseball caps with flat brims and novelty T-shirts. Hot air belches from a network of silver air ducts. I almost choke on it. I strip off my coat and sit down at a booth, making sure to face the door.

I realize the bartender is shouting over the bar at me. She calls me "hun" to attempt to soften her tone. She is apparently too lazy to come to my table to take my order and screams the names of the two things she thinks she remembers me drinking once. She is the worst bartender ever. Instead of approaching the bar, I scream back at her, and she fixes me an overpriced Crown and diet cola. When she arrives at my table, she sets it on a flimsy paper napkin. I'm surprised she didn't huck the drink at me to save herself the effort. I have thoughts of the thick-walled rocks glass hitting my right cheekbone and splattering its ice cold contents upward in a brownish geyser. I smile at her, take a long draw from the fat, red straw, and tell her thanks. She asks if I had a quick tan on my way down the hall. After examining her face, I see she is completely serious. The thoughts I have in my head make me feel very guilty. I told her I just visited the restroom on my way in. Then I ask her if it looks like I tan.

We both laugh, but she knows the joke's on her. She leaves me alone with my thoughts.

I take a pen from my purse and begin scribbling on my soggy napkin. I should carry a notebook with me. The owner of the bar comes in, and I have fantasies about the staff wondering if I'm some sort of restaurant critic as I'm writing. I see stacks of plastic burger baskets lined with checkered paper and containers of silverware. When I ever tried to order anything to eat here, the bartender always seemed nervous and told me the kitchen was closed, no matter what time it might have been. It's probably a blessing in disguise.

The electronic jukebox casts off a throbbing blue light. There are nine televisions surrounding us all on metal stands at ceiling level. They are flickering and spouting silent images of red-faced coaches shouting and balls bouncing over Keno squares. The cinder block walls are painted a sickly yellow and covered with an odd collection of neon advertisements for booze, state school flags, a pair of old skis, and a couple badminton rackets, apparently to classify the place as a sports pub. The wiring is encased in metal tubes that look like metallic veins running all over the walls. The neon glow is the main source of light in here. I wonder if this is exactly where I was sitting when our church group saw the movie Ghandi. All I can remember about that movie is that I was not allowed to use the bathroom. I was in excruciating pain for 188 minutes. The fact that's all I can remember about the film probably automatically renders me a bad person. There are undoubtedly a lot of things that probably classify me a bad person, but you have to start somewhere. At age 12, that was probably all I could manage.

The friend I was attempting to meet never materializes. I cease to care anymore. I enjoy the flavors of artificial sweetener, cola, and alcohol mixing on my tongue. I think of going home but decide to linger a bit longer. I'm comfortable. I attempt to shake fresh images of my other friend trying to locate something to grip onto as the muscles in his legs spasm, cramp, and die. Of the nightmares I'm having now. Of the anxiety that is slowly filling every cell of my body. How nothing seems immune to change. How for just one moment I would like to feel secure. How my prayers have turned from rare, polite whispers to constant, desperate begging at the top of my lungs. I wonder if anybody is listening to me at all sometimes. I keep shouting, anyway.

A man at the bar goes out for a cigarette. Smoking is forbidden inside the bars as of January 1st, but I wonder if the stale scent will ever fade. My guess is that they will probably have to repaint. I go through paint chips in my head and secretly redecorate the place without the owner's consent. After all, nothing ever stays the same. But change never seems to evict the ghosts. They seem to hang on forever.

If I concentrate hard enough, I believe I can detect the scent of ancient popcorn.

A La Cart

2009-01-01T06:39:00.000-08:00

Erik has become Mr. Question Man. His sentence structure is becoming more sophisticated, and he seems to enjoy expressing himself more easily. One of his favorite things to do is to query others to obtain information. Especially me.

Lately I have heard the following:

"Mama, did you go to Home Depot?"

"Are we going to go see Boppa and Gua?"

"Did you take the cat her medicine?"

"Want to do some laundry?"

When he wants something, he will still use the good old "Want some ______," as it gets his point across and is easiest to blurt out when he is in a hurry. There are exceptions to this, though. For example, he recently told his father to turn off the TV and make him a quesadilla. The other day he asked me probably hundreds of times for a snack. All day long I heard "Want some snack." It didn't matter that I had given him something to eat or what it was. He repeated that same phrase over and over until I was ready to gently set him out on the front porch and shut the door behind him. When his father came home and I headed out to dinner with a friend, I made a call home on my cell phone to remind Brian there was hamburger thawing in the fridge. In the background I heard Erik ask to speak to me. As soon as he got on the phone, he said it again.

"WANT SOME SNACK?"

I had to laugh.

I am allergic to shopping and plan the meals we have here carefully so I don't have to go to the store more than once a week or even longer. Without a steady stream of work this time of year, I don't leave the house more than I have to. These mega trips to town cause my cart to overflow with produce and snacks for Erik. I took him out yesterday and realized it would be the last time he would fit into the seat of the shopping cart at one of our local supermarkets. While the carts at Costco are roomy and even built to accommodate two small children, these are on the smaller side. I left his AFOs (leg braces) off because cramming his lower extremities through the metal bars in the cart when they are encased in plastic is more difficult than it looks. Plus, I have had difficulty extracting him from the thing in the parking lot when our shopping is complete. I end up violently yanking on him, which he tolerates extremely well, and I glance around me to make sure nobody is looking, wondering if this might be the time we need to call the local fire department to come to our aid with their pneumatic cutting tools. This would surely negate any possible nomination for me becoming Mother of the Year.

Yesterday, however, I did manage to feed his limbs into the cart and tried not to step back and take a look at how ridiculous he looked in the thing or how many pounds he exceeded the limit posted on the cart's flip down butt flap. I just made sure not to take both hands off the cart's handle when it was empty for fear it would do an end-over. I wheeled Erik around the large store, first selecting three new pairs of fleece pajamas and avoiding the blanket sleepers with feet in them. Erik seems to be growing so quickly that he no longer fits into the ones designated for his age. The toes in them rip out within a week. He helped me pick pajamas out for the first time and seemed to like the ones with racing cars on them the best.

Erik was obviously uncomfortable and asked to go home several times but hung in there and endured at least an hour of shopping. He greeted everyone, obviously preferring to speak to shoppers in their teens who stammered hello back and tried very unsuccessfully to ignore him as we passed by them repeatedly on each aisle. Erik says hello to everyone in the store thousands of times if he can as if he has never seen them before and seems delighted to spot them over and over. He even assigns them names sometimes, loudly spouting random things such as, "HELLO, ALICIA!" which can be quite confusing for passers by. One woman was greeted so many times that she ended up having a lengthy conversation with Erik and seemed to really enjoy it. I usually let him carry any conversations we have with strangers and go about what I am doing, looking up quietly and smiling to acknowledge them here and there. He is also obsessed with spotting the little scissor lifts and forklifts they use to stock shelves. Remember when I could barely take him to the store because of the horrendous beeping noises these pieces of equipment make?

I sure do.

As we waited in line to have our groceries checked and bagged, a very attractive, fit-appearing woman said hello to Erik and asked if he remembered her. Her daughter, who was probably about 12, smiled very brightly at Erik. When the conversation they were having seemed longer than usual, I looked up and said hello to the woman. She told me how cute she thought he was and then explained that she was with a local Christmas caroling group and that Erik sang with them recently. When I looked confused, she said that the lady who cared for Erik one full day a week was her dear friend and that they had gotten together when Erik was in daycare. They made their way through the line and disappeared. I had to laugh, as I had no idea Erik had gone Christmas caroling this year. I was already losing track of my independent son at his ripe old age of 4.

We stopped at the bank machine on the way out, and Erik tried to chat up the lady with her back to us pulling money and a receipt from the slots. I put my finger over my lips and quietly shushed him, which he found hilarious. He laughed loudly, and the woman doing her banking smiled over her shoulder at him.

We made our way out the door, rolling over a sheet of black ice covering the parking lot. I successfully yanked Erik from the cart and swiveled my body to put him in the car, hoping the muscles in my back would hold and allow this familiar motion.

Until Erik is mature enough to stand by my side and not pull items from the shelves onto the floor, this mega trip was our last at this particular store. He tends to disappear in an instant, and my hands need to be free to hold onto him at all times. Luckily, he is a busy boy and I am able to make these trips during school or his physical therapy appointments at the pool. It won't be the same, though.

It certainly will be quiet.

Epidermis Profundus

2008-12-29T10:15:00.001-08:00

I have thought long and hard about the cruel words that occasionally come my way. It's actually amazing they don't come more often, but 99.9% of the feedback I have ever received here has been positive. Maybe that's why it's so shocking to hear something negative. I could start a blog on casserole recipes or little stories about my cat and would expect more negativity. In the old days, I would have cried for two days. This time, there were no tears shed whatosever. Instead, the four ugly words followed me like obscene little ghosts as I went about my daily activities, but a glance over my shoulder reveals that they are beginning to vaporize. Knowing the way I think, I will likely never forget them, but they will get shoved in a box somewhere in my brain.

My skin doesn't feel very thick, but maybe I am making progress after all. If someone pokes fun at my son by calling him horrible names and it doesn't bother me, my guess is that there would be something incredibly wrong with me. I want thick skin, not gnarly calluses.

Right?

Of COURSE it will hurt my heart. However, I hope that with each passing year it gets a little easier to heal these types of wounds. That they will feel less like axe wounds and more like paper cuts. I have faith that it will be easier. Looking at my latest response, it is clear that it already has. I can hardly read what I wrote two years ago here, as my heart fractures into millions of pieces. I am enjoying life again. That's progress.

When I started this blog, I did it thinking I was just whispering my feelings into the darkness of the universe because, quite frankly, I didn't know what else to do or where to turn. Writing has always been a comfort to me ever since I could hold a pencil. To find out someone is actually reading my words and might even feel a little less alone, WS child or not -- well, that's comforting to me, too.

It's nice to be heard and have hands to hold. Thank you.

Thin Skin

2008-12-27T14:11:00.000-08:00

Should I yank the videos and the photos of Erik off the internet as his disability becomes more apparent and his appearance becomes just a little more unusual with each passing year? Do I let strangers who hurt me with their horrible comments win, or do I learn to ignore them? Can I at least think of a snappy retort or two? I am in need of much thicker skin. I knew the risks when I decided to share Erik with the world. I thought I was ready, but the game is always changing on me.

I know I am tougher than I used to be, but I have a horribly long way to go.

Merry Christmas 2008

2008-12-25T07:02:00.001-08:00

Heart-Hangover #1584

2008-12-23T04:37:00.000-08:00

Ya know I'd like to keep my cheeks dry today
So stay with me and I'll have it made

-- "No Rain" (Blind Melon)

One of Erik's friends celebrated her 3rd birthday this weekend. We had a fabulous time with our friends at the party. I enjoyed getting a good dose of the sparkles, pastels, and glitter that come with having a little girl around. The snow came down in big, gorgeous flakes all afternoon, and it was very cozy inside. Erik sang "Happy Birthday" with as much emotion and energy as Whitney Houston singing the national anthem and clapped his hands together when the song concluded. He allowed me to steal frosting from his piece of cake, and in return I let him eat in peace without my fussing over him like I usually do. He is really enjoying his own friends now and asks about all of them. I no longer have to listen to him begging me to turn the car around when we are on the way to visit children his age. He was even interested in the opening of presents and was delighted to see a purple monster truck emerge from under layers of wrapping paper. He staged a miniature carjacking and took off with it for the nearest tile floor.

One day after the party, the familiar heart-hangover set in once again. Although it is much easier for me to attend children's birthday parties than it used to be, my response varies greatly these days. While I do just fine sometimes, on other occasions I feel like collapsing the next day. Some people are afraid of the dark. I just happen to be afraid of balloons, buttercream, and birthday candles. Last night I asked Brian if he had difficulty watching Erik interact with everyone, and he very quietly said yes.

That made me feel a little better.

Erik gets in faces, whether they are familiar to him or not. He knows no strangers. He says hello hundreds of times to everyone for at least an hour, which often generates slight irritation from other children. It shows on their faces, which I suddenly feel like slapping, although I suppose I can't blame them. This now keeps us from taking him to the adult functions we would have taken him to when he was younger. While everyone is generally very kind and seems to find Erik's personality delightful, it's hard for me to hear the laughter that goes with taking him anywhere. And I hear it EVERYWHERE. I know they aren't laughing AT Erik, really, but my mama bear protectiveness kicks in each and every time, and that's exhausting. I admit that sometimes I wish he could just blend in a bit. When he saw my friend's father come through the door at the party, he yelled, "HI, SANTA!" The room erupted in laughter, and I wanted to crawl under something and die.

Although we often have to intervene when he is completely inappropriate with a stranger or someone who might find his behavior uncomfortable or disruptive, it is now necessary to let him go in a safe environment and watch what happens, even if it makes me very nervous. It's incredibly difficult for me to do. I was a shy child. I did my best to blend in and not do anything to draw attention to myself unless I was completely at ease. Erik is my polar opposite that way, and it terrifies me. He is always completely comfortable around people. His personality is very unusual. His behavior is even more unusual. I guess "blending in" just isn't part of the plan for Erik.

It's obvious my kid couldn't hide his (halogen) light under a bushel if he tried.

So, after binging on cookies and opening a bottle of good wine by myself yesterday, I suppose I feel better. There's nothing like a sloppy, pathetic session of feeling sorry for myself and letting the emotions ebb and flow. Facing what I feel head on seems to make the next birthday party a little easier.

While I was writing today, I thought of the "Bee Girl" in this music video. I haven't seen it for years. I found it, and it was just what I needed. Watch the whole thing, dance, and enjoy.

A Close Shave

2008-12-20T11:52:00.000-08:00

I am incredibly excited.

Because of Erik's anxiety and sensory issues, taking him for a professional haircut has never been an option. Brian purchased an electric hair clipper kit at Costco years ago. I fell in love with the little plastic cape, the cute little mirror, and the collection of clipper guards in various lengths. I cut Brian's hair twice with it but decided doing this was too scary. After all, Brian works in an office setting and needs to look professional. To cut Erik's hair, I have been using a pair of tiny scissors with blunt ends ever since he grew his first strands. He has so much of it now that this has become a ridiculous endeavor. I can get it to look presentable, but when it grows out, it sticks up all over the place. And I have lacerated the loose skin overlying my knuckles more than once when he moves suddenly. I bleed but continue to cut because getting him to sit still is next to impossible.

For the past couple of haircuts, I have taken the silver hair clipper out of its zippered case. I put it on the counter and let Erik touch it. After a while, I turn it on to let it buzz and hum under his fingers. Then I put it away and store it back under the sink before I begin hacking away at his hair with the baby scissors.

Today I got the set out again. I found a guard that looked like it would work, and I snapped it onto the shaver. I took a deep breath and readied myself to try something new. I told Erik he could watch his John Deere DVD after I cut his hair, and he agreed to sit on the counter for me. He very quickly spotted the shaver and allowed me to turn the thing on once again. We talked about it for a minute, and then I ran it across the top of his head a couple of times at warp speed. A couple of alarmingly giant gobs of blond hair fell onto the counter. I winced but continued, hoping my quick shear would not ruin any upcoming Christmas photos. He squinted his eyes shut, still smiling, and let me continue, seemingly enjoying the sensation on his skull.

What used to take me 20 minutes now takes me two. Sure, the guard was a bit on the short side, and he looks like a the youngest jarhead in history, but it's fairly even. He was tickled pink when we were through because he has seen his father use an electric razor and seems to like being a little more grown up these days.

Dread

2008-12-19T14:45:00.000-08:00

Wake up look around memorize what you see it may be gone tomorrow everything changes. Someday there will be nothing but what is remembered there may be no-one to remember it.

-- Michael Dransfield

Last night I dreamed I was attending a business meeting. The type of ridiculous time-waster I used to be forced to participate in years ago when I worked at a real office with real people. We sat around a glass table on a deck atop a skyscraper. We were surrounded by thick railings and glossy plants in chunky pots. As I chewed on the end of my pen and went to my own happy daydream-place, I glanced down at the streets below. I saw water gush up the stairs from the entrance of the subway. The thick, forceful column pushed a handful of dark silhouettes of what I finally determined were people into the air before slamming them down onto the sidewalk. After that, they were still and looked like soggy, crushed ants. I slowly stopped my chewing, removed the pen from my mouth, and realized I heard faint screams. I looked up into the sky and saw giant chunks of rock falling through the atmosphere, leaving lazy trails of wispy, toxic smoke. I looked at the people around me to gauge their reactions and determine my own socially acceptable response. They quickly gathered their papers and belongings. They were going for the door to the inside the building. I was suddenly aware of the lovely warmth of the sunlight on the skin of my arms and face and the summer breeze that ruffled my hair.

I remained seated, attempted to accept my fate, and said, "I think I'll stay here. It would be a shame to die inside on such a beautiful day."

I wanted to see what was taking place, even though I was doomed, anyway. I was left alone.

Everything went blurry for a while, as dreams tend to do. Because I voiced my preferences aloud (always a mistake in my case), I soon found myself trapped inside the confines of the glassy building. There were tiny, white garlands of lights strung around poles for Christmas, and people sprinted in every direction. I thought how strange it was that I couldn't find the familiar block lettering of the required exit signs. I knew in my heart that I would never make it outside. I wondered what I would do when the power went out. It really bothered me that I couldn't see what was coming for me. That I would die in the ruins of a dark building alone.

Then I woke up.

My heart flailed inside my rib cage, and I marveled at the sharp feeling of adrenaline surging through my veins and arteries while the rest of my body was almost paralyzed and half asleep. That alone has to be hard on a person. I could hear my pulse pounding in my ears.

I think I know why I had that dream. Partly, anyway.

I hate the unknown. It's also difficult watching somebody die, like I fear my friend is. The more time that passes, chances are his diagnosis of ALS is correct. I'm still trying to grip firmly onto my previous toasty-warm cloak of denial. We had a really good day together this week, and it was easy to forget that his body is giving out. I made him chicken enchilada soup, and he even ate a sandwich I prepared without a problem. He rarely eats anymore because it all goes down into his lungs and causes infection, as his throat no longer functions the way it should. However, if you ignore the limp and the cough, it's pretty darn easy to forget he's sick at all. Yesterday, though, he told me that he was speaking in a meeting and had to excuse himself. His lungs are beginning to fail at a frightening rate. Each week seems to bring another subtle change. Changes I usually choose to ignore or have trouble visualizing at all. He is consulting another doctor in another state, but there doesn't seem to be much anyone can do for him. He lives on nebulizers, pills, and physical therapy, but nothing seems to slow the course of this disease.

There are still good days. Days during which I feel as if we are sitting out in the sunshine, telling stupid jokes and laughing ourselves silly. Just like we used to do when our lives were so different years ago. Back in the days before we thought about things like developmental disabilities or neurodegenerative disease. I don't like talking about his illness, especially with him. Most of the time I just think of other things. Sometimes we talk about him finding a way to send me messages when he's gone.

My tree is decorated, and I bake cookies. I go to parties with Brian. I love the fluffy snow falling from the sky like powdered sugar. It's strange doing little things and pretending that everything is fine when I know he is suffering out there somewhere on his own. But I do. I do all that I can afford emotionally within the limits of practicality, but I have a life to live here and other people to care for, even though I'm hurting deep inside at various levels all of the time. I hate that my life is going to change yet again in the near future. I hate change. I know what's coming. I don't know how or when, but it's out there. I just can't see it yet.

And it's leaving a smoky trail as it searches for its target.

(Update: He is in the hospital this evening with yet another lung infection.)

Imperfection

2008-12-14T15:11:00.000-08:00

I sat in my pew at church today and watched the little door open to reveal Erik and Marla coming in for the children's portion of the service. I took a deep breath and elbowed Brian in the arm. Erik's eyes were wide, and he scanned the people facing him. He's usually bigger than life to me, but out in the world without his hand nestled in mine, he looks incredibly small.

But I didn't cry.

The youth pastor held up a drab-colored plastic bowl for the children and explained how it was perfectly formed. That it had been molded that way in a factory somewhere and was ready to do what it was designed to do. That, in fact, there were a million bowls just like it that were designed to hold ice cream, or yogurt, or fruit. Perfectly.

He then held up a slightly asymmetrical clay bowl glazed in two different colors that a friend had made for him. The light coming from above reflected off its dimpled surface. He explained that the bowl had been intentionally made this way into a unique form and that, like this bowl, none of us is perfect. That each of us contain things that make us different. I looked at my fair-haired boy blinking in the bright lights, sitting on the edge of the group of children. I thought of the secret we keep shrouded in silence from the people surrounding us. The blank spots on chromosome seven where those missing genes should have adhered. The strange little secret that makes Erik incredibly different. The secret that is very slowly revealing itself, whether we are ready for it or not.

But I didn't cry.

The youth pastor pointed out the strange bump on his ear that wasn't considered normal but ended up being a family trait that he shared with his sister and his father. How this very flaw makes him special and confirms his place within his family.

How imperfection makes the world richer and more interesting.

How imperfection ends up being a gift if we dare to accept it.

The pastor asked the children to repeat a prayer celebrating each of them, imperfections, differences, and all, and then they were excused. Including Erik, who apparently successfully went to the last half of Sunday school. Perfectly.

And I didn't even cry.

E-Mail Part Deux

2008-12-12T16:42:00.001-08:00

I just saw the advertisement for novelty IQ tests on Facebook I had an issue with 10 days ago. It no longer says "(4) of your friends are RETARDS!" It now says, "(4) of your friends are IDIOTS!" By the way, I never got a response to the e-mail I sent.

Is it tasteless? Yes. Can I live with it? Hell, yes.

Coincidence? Maybe. I'll keep my eyes open.

In any case, I plan to keep on SHOUTING. Thanks for the inspiration, ladies.

Potty Training Continued...

2008-12-10T11:15:00.000-08:00

My son sat on the toilet today! He did not even scream, cry, or curse at me. He seemed to even enjoy the experience. I ask him regularly if he wants to try it, and he usually firmly but politely lets me know that will not be happening, after which I let it drop. Forcing the issue has only caused more of a delay. Yesterday he gave me a couple of unenthusiastic okays. He sat down on two occasions and even accomplished something during one session. Stinky Dog came along for the ride and gave him encouragement in his deep voice. It looks like I will eventually need to schedule regular visits to the bathroom, as he does not give me clear signs (until it's too late) indicating he needs to go and doesn't seem to give a hoot if he is sitting in his own filth or not. He does enjoy fruit snacks, however, and is pleased when he is presented with those, so that gives him some incentive.

Last summer I discovered Erik's diaper was overflowing at Los Angeles International Airport five minutes before our plane boarded. I had absolutely no place to change my long-limbed boy. Changing tables are no longer structurally sound for Erik, as he would likely snap them right off the wall. I ended up finding a counter in a janitor's area inside the ladies' room and I did it there. It was a complete nightmare, after which I wanted to bathe in gallons of hand sanitizer, but I shudder to think what would have happened if we had boarded the small plane with a loaded diaper. There wasn't enough room to stash a larger carry on bag, let alone scoop poop from my child's pants without putting my elbow in a fellow passenger's eye.

We watched Potty Power again yesterday. In this DVD, the narrator, named Jessica, and her friend, "TP" (a talking roll of toilet paper that is noticeably suddenly absent during the segment on wiping bottoms), tell the story of Princess Jill, a seemingly chronically constipated little girl who refuses to use the powder room. The court jester, a disturbingly pervy little creature who sings and tells really horrible jokes that make me laugh every time, decides that the princess is displeased with the color of her potty, which looks as if someone got a hold of it with a BeDazzler, and paints it green. The king and queen then replace the princess's diaper with "royal underwear," a term which now makes Erik giggle, and her potty dilemma magically resolves.

Erik absolutely adores this video. It is disturbing, and I find myself singing songs like "Wipe Your Bottom" and "Sittin' On the Potty" in the car, but it has sparked Erik's interest in using the bathroom.

Unfortunately, his potty problems run much deeper than a fresh layer of kelly-green paint. He seems to find the setup on the adult commode uncomfortable and awkward, but he is far too big for the potty chair I purchased with the intention of having completely trained him two years ago. However, he does understand the toilet and its accessories and is slightly interested -- but not quite enough yet to make it a habit. He is making some progress, and after talking to his teachers, we have decided not to force the issue.

There are signs of progress now in terms of general development as well. He is beginning to enjoy slipping our shoes and clothing on. He very confidently clomps around in our sneakers and boots and finds this greatly amusing. I figure this is a step in the right direction. In fact, today he put on his father's hat, looked at me, and said, "Hi, Booga," which is something Brian always says to him when he comes through the door after work. He is thinking about being like us now, and that is wonderful...and even a little flattering.

Hopefully, that will carry over into the lavatory!

WSA National Convention News

2008-12-08T12:59:00.000-08:00

It looks like we will be traveling to St. Louis, Missouri for the convention in 2010!

Important

2008-12-06T12:27:00.000-08:00

At our mothers' support group this week, I found myself telling the other women how each of our children has a place in this world, even if we cannot see it at the present time. No matter how severe their disabilities or how short their time on this planet may be, they can and will change the world using the skills they have, one person at a time. I believe that you do not need to know how to add, drive a car, or even speak to make a difference. As I spoke, I realized that my words seemed to be forming more of a question than a statement and that I might be trying to reassure myself that Erik will be okay. What's important for me to remember is that Erik's path is going in a different direction than the neat, tidy one I imagined before the diagnosis came. He will likely not perform surgery, play professional football, walk on the moon, or even do his own taxes, but the things he does are indeed important in ways I don't necessarily understand, and they are straight from his heart. Erik just being Erik is enough to change the people around him forever. He has accomplished a lot in four short years, and I'm sure I don't see the half of it.

Maybe it's the dips on the hormonal roller coaster I seem to be on this week, but the following movie really touched me. I found it in my in box this morning waiting for me just when I needed it. It illustrates my hope for our kids beautifully and soothes my fears somewhat about my own child. As I know that many of you have the same hopes and fears as I do, I'll share it here.

First Christmas Party

2008-12-06T07:42:00.000-08:00

We attended the Christmas party at Erik's school last night. Erik has been a part of this place for quite some time now, but we have never been to one of these parties. I suppose I never felt like spending any of my free time there before. Earlier in the day I asked Erik if he was interested in seeing Santa, and I was amazed by his newfound enthusiasm. His reaction sparked excitement in me that I haven't felt in the past few years. I put on a fresh coat of lipstick and switched out his shirt for something with less food smeared down the front. I realized I was having yet another "normal mom moment" and enjoyed the feeling. It's nice no longer being trapped at home by a noisy world.

When we arrived at the school, the street was clogged with cars. The entrance was decorated with a bright green garland of lights, and people were filtering through the front door with their children. Erik was greeted by the staff, and we made our way to the little gym at the end of the hall.

The long, cramping line to see Santa was made up of people who looked mostly only vaguely familiar. I eventually spotted a couple mothers and their spouses I knew well and chatted with them as we stood in line. The sweltering temperature in the room almost took my breath away at first, and I stripped off my jacket. We stood next to twin girls whose mother introduced herself and reminded us that we were invited to their birthday party this weekend. I racked my brain for items 5-year-old girls might like to play with and tried not to panic about being immersed in yet another social situation. When we made it to the front of the line, Santa extended his arms to welcome Erik. It was a sweet sight to see. Erik didn't hesitate this year, even though he has only seen Santa once. He went quickly to him and was placed on his lap. I snapped a couple of photos and then was approached by another mother who introduced herself and shook my hand firmly. She explained that her daughter rode the school bus with Erik last year and that Erik was her own personal favorite. She admitted she had really fallen in love with him. She remembered out loud when Erik first arrived at the school. How he could barely walk and never said a word. How she was amazed by his progress over time. I felt unexpected emotion wash over me as memories of the first two dark years of Erik's life flooded my brain. I remembered the struggles we had in the very room we stood in. I smiled and successfully fought off tears, realizing I have packed many of those memories away now and have moved on but that they would always remain inside of me. I shook off the feeling and told her that I loved her daughter, a little girl with beautiful blond hair, a sweet smile, profound compassion for my anxious son, and an extra chromosome. She smiled back at me and disappeared back into the crowd. I am amazed at how easily people approach me these days and show our family such kindness. It was difficult but eye opening to have a view into our little world from the outside. It is nice to know that we are not invisible after all. I needed that.

On our way out, Erik did the cupcake walk with Brian and emerged with a goatee made of slimy chocolate frosting. His teacher greeted me and reported that this week he followed her instructions for the first time. She said it was no longer necesssary to lead my passive son through each and every thing and that he had improved a great deal. She described how he used to be, too.

Whew.

Brian purchased a snack-sized bag of cookies at the bake sale table, and I bought a star for the Christmas tree in the hall. I put Erik's name on the tag and hung it from a branch. I try to give back a little every year. The funds for the school are evaporating, but I have hope that things will change.

They sure have for us.

Manly Chortle

2008-12-04T15:49:00.000-08:00

I tickled Stinky Dog's tummy as I crawled into bed next to Erik this morning, and the putrid, floppy stuffed animal actually laughed. It was a deep, totally genuine sound that made me giggle, too.

Methinks the elusive pretend play component of childhood is finally kicking in. I'll have to check, but I think Erik could possibly be the first ventriloquist with WS in the world.

America's Got Talent, here we come.

Pissed Off E-Mail

2008-12-03T14:53:00.000-08:00

To an internet company who is advertising IQ tests for entertainment purposes.

To Whom it May Concern:

I just spotted your link on my Facebook page that read, "4 of your friends are RETARDED."

I am thankful most people are not parents of someone who is developmentally disabled. Not because they are not a complete joy to be around but because the road is difficult, and it does not help that the world makes it very clear that they do not fit in. One of the ways this is apparent is the rampant use of the word "retarded" (slang). In fact, I would consider this bordering on hate speech. It is not acceptable anymore to use this word (even the medical field is dropping it), and many of my friends on Facebook who see these links have children who would have been considered classically "retarded." We find this offensive. Period.

My son was born with a genetic birth defect, and I was told that he would be "retarded." It was like a punch in the stomach. Put yourself in my shoes. How would you feel if you found your child was the butt of jokes? No matter what your age, it is no longer appropriate to use this word. Period.

I challenge you to change your thinking and improve your public image by removing this word from your links that pop up on sites like Facebook. If you do, I will sing your praises to EVERYONE who will listen. My friends are already spreading the word. And we have very LOUD voices. Please forward this to the appropriate parties.

Very sincerely,

The mother of a developmentally disabled child who does not think the R word is funny

One of Those Days

2008-12-02T07:54:00.001-08:00

Another first: Erik locked me out of the house.

I stand on the front porch, completely embarassed because my girlfriend is leaving and has to be somewhere five minutes ago. She is on her cell phone and looks in my direction with a concerned look on her face. I smile sheepishly and peer through the side light window. I see Erik's face and talk slowly and loudly, begging him to open the door. He stares back, seemingly quite pleased with himself. He looks directly at me and smiles defiantly, enjoying the power he suddenly has. I finally decide to trick him by asking him if he wants to go outside, and I instantly hear the deadbolt slide, freeing the door. I jam my foot in the door like the world's rudest salesman and stomp inside the house, raising my voice and telling him that he is never to do that again. My fear for his safety has transformed to frustration and anger. He quickly bursts into tears, and his face goes red and scrunchy. I roll my eyes, hug him, and take him outside to play.

He rides the yellow tricycle with the little seat he could not balance himself on before for the very first time. And he rides it all the way around my Jeep in the driveway, even steering the dang thing.

I cheer loudly.

Mess

2008-11-30T15:42:00.001-08:00

Never think that God's delays are God's denials. Hold on; hold fast; hold out. Patience is genius.

-- George-Louis Leclerc de Buffon

We made it to church this morning. Although we are now fairly regular about attending, we still don't go every week, and that's just fine with me. My attitude is slowly improving about the whole experience, despite my general dislike for organized religion, and my fear is beginning to fall away somewhat about letting Erik go to find his way in that particular environment. It just feels right. It is what I fought for.

We are now attempting to get there early enough to enter through the front doors so Erik can greet the greeters and other members of the congregation like the other children do. It feels gloriously normal. From there, we take a detour back out of the sanctuary and locate Marla, Erik's personal caregiver, to drop him off. This morning she mentioned she might take Erik into the sanctuary during the service for the very first time. Brian and I looked at each other and voiced our surprised approval.

This morning's message was about patience. The word was defined as the ability to live for the here and now, even in the middle of the incredible mess that life sometimes is, instead of trying desperately to control what we cannot and rushing to get to the next perfect thing we desire to do or be. It was explained how even the story of Christmas has been so sanitized and idealized that the pain, struggles, and heartache that accompanied and even helped bring about the miracles have nearly been lost. And how we might relate to it and find even more hope in the story if we know the chaos and the mess that went with what truly happened. Because we live in mess and chaos a lot of the time.

Part of my own personal mess includes the struggles with isolation and heartache that come with having a child with some very bizarre special needs. We have occasionally simply been forgotten and excluded in the past, even at church. Now that we are included as much as possible, things are still messy. For example, it rips my heart out to watch the other children gather at the front of the sanctuary for the children's moment during the service each time we attend. I'm getting accustomed to it and even enjoy it a bit, but it always stings my insides knowing Erik is unable to participate.

Today, though, the door to the sanctuary opened, and Brian whispered, "Here comes Erik." I turned to see his little face bobbing in the group of other children. Marla sat down with him on the edge of the group nearest the door. Erik seemed slightly anxious and hell bent on loudly repeating "Happy New Year" to whomever would listen for some reason, but Marla whispered in his ear, and he finally became quiet. His eyes were wide, and he looked up at the lights and then around at the faces of the other children. When coins were dropped into a metal bucket to fund meals for the hungry in our community, the sound caused Erik to cover his ears in alarm. However, he remained sitting on the steps with the other children. The steps he has never touched before. The steps where I once stood in my polka-dot dress to be baptized. The steps where I waited alone in an empty sanctuary for Brian to see me for the first time in my wedding dress. The very same ones. Now Erik had a place on them with everybody else. Finally. My heart swelled with happy ache.

I felt hot, embarrassing tears welling up in my eyes, and I tried to will them away.

As the children finished their portion of the service and they were told to leave for their age-appropriate programs, Marla pointed us out to Erik. By this time, the tears were quietly flowing from me like rivers. They ran down both cheeks and the front of my neck into my sweater. There was no stopping them now. We began waving at him. Erik was obviously surprised and smiled back as he was led past our pew. The people around us smiled and glanced back at us, too, not knowing our story but obviously appreciating our unusual, unbridled enthusiasm. From there, he apparently spent the majority of his time in the children's program he would normally be part of. The very program that has not been possible for him in the past because of his hearing. By Marla's side, he had very little trouble this week.

We gathered our things after the service and found Erik and Marla. As we turned to leave, I threw my arms around Marla (something I do not normally do) and hugged her tightly. I then plucked one of the last shortbread cookies from a tray for Erik, and we made our way outside. Erik squinted his eyes tightly shut as Brian held him up to the rope hanging down from the church bell, and Erik gave it a few tugs, filling the air with bold, joyous clanging. I made small talk as I fought persistent tears and marveled at how completely wiped out I felt. I laughed out loud at this and sighed.

I was a happy mess.

Seasonal Affective Disorder

2008-11-29T07:34:00.000-08:00

He is a blur as he runs circles around the house and pushes a toy truck. Sensing my complex tangle of emotions with his heart-radar, he screeches to a halt and looks at me sitting in my favorite spot on the couch with a blanket pulled over my lap. He expertly softens his voice, which he he has been using to create the rude, hoarse rumble of an engine to power his truck for the last 20 minutes, and asks, "Mama, are you happy?" He looks at me with pure-white hope in his eyes, desparetely willing my mouth to form the word "yes." One time when I admitted that I was sad, he burst into tears, and we both cried. I don't do that anymore.

I feel a wide smile forming on my face, despite the horrible holiday ache that is setting in, and tell him that his mama is just fine. He turns his head to the side slightly and stares at me more intently, as if he doesn't believe a word, but he lets it go. He smiles politely and pushes his truck to another destination in the kitchen. As he passes, I see one of his little toes boring a hole through yet another set of PJs.

The Christmas lights create chase away the darkness of morning, and my coffee steams in the confines of its cup. My lips draw from it, and I feel it warming my insides. I will get through these strange couple of months that bring the dark things that I have worked so hard to suppress to the surface. I will get through them, just as I do each and every year, and put them away with the decorations in January. Starting a new year not knowing what is ahead has always scared me to death, even when I was alone and things were simple. It's thrilling and frightening all at the same time.

There is much to be thankful for this year. Despite the familiar holiday ache setting in.

Just Wait

2008-11-21T16:08:00.000-08:00

Today I stood at the front desk inside Erik's school waiting for the receptionist to feed Erik's immunization record through the copier to prove he received his hepatitis shot last January. I have never talked to this woman before, and she didn't look familiar to me in the slightest, but that's not unusual. I have never been great with names and faces.

When she reappeared behind the desk, she returned the waxy, yellow document to me, and I slowly folded it up to place in the zippered pouch inside my purse. She made small talk by commenting on my organizational skills, and I laughed, knowing that yesterday's crusty breakfast dishes were soaking in my kitchen sink waiting for me when I arrived home. What she did next surprised me. She leaned over the counter, directly into my personal space, as if she were about to reveal a guarded secret.

She said, "You know, Erik is my favorite."

She then explained how he had reached up to tightly grip her hand when it was time for him to board the bus the other day. She described how she let him lead her out the front door and the way he jumped with alarm when the incoming bus hissed loudly to a stop. How he apparently looked up at her and said, "Air brakes." She giggled at the memory, and I smiled back.

I can't count the times I have heard that Erik is somebody's "favorite." I know that people generally love children, but I am beginning to wonder if some of that weird special something in Erik that I have always seen is shining through in a big way and pulling people in. At the beginning of this, I dismissed my amazement, knowing that I do not see things very clearly in my role as his mother. Especially one who has never been around children a heck of a lot. After all, even if he were miserable to be around, I would still believe he was the greatest thing since sliced bread. However, as time passes, I can clearly see the unique effect he has on the people around him. Even the pathologically cranky ones. I am often amazed at the magic that Erik seems to exude. Erik has a confidence I can only dream of.

For people who are new at this Williams syndrome thing, all I can say is JUST WAIT.

Yes, the diagnosis is devastating. I know this well, and it always will be at some level. Yes, it feels as if the world is ending. Hang in there. You will be completely blown away as your personal story unfolds and you dare to open your eyes. As the innocence manifests itself. As the love pours from your child like a river from an almost heavenly spring you cannot see. As you let your defenses fall away and the world sees your child for who he is for the very first time. As little miracles become everyday occurrences. As he touches people who are hurting in places you could never reach with your adult words and your carefully rehearsed, socially acceptable phrases. As he becomes your personal hero. It sounds completely crazy. I know it does.

I wish I could share with you how incredible this experience feels.

For now, there is only one thing I can say.

Just wait.

More Miracles

2008-11-18T09:50:00.000-08:00

You are my special angel
Sent from up above
The Lord smiled down on me
And sent an angel to love

-- "You Are My Special Angel" (Bobby Helms)

We just returned from the children's cardiology center. There has never been any danger of the staff forgetting Erik. They are amazed at how much he has grown. Erik walked right into the nurses' station singing "You Are My Special Angel," which is our song. Stinky Dog was allowed to come on this adventure, and Erik introduced him to the ladies. Luckily, he was less stinky than he usually is.

Erik previously received a DVD on John Deere tractors for his birthday from his friend Brandon in Portland. It is now on his top 10 list of favorite things. I brought it along to give to the technicians, and it was placed in the DVD player, much to Erik's delight. He also took advantage of the little wooden train set. For the very first time, Erik allowed himself to be weighed (35.7 lb.) and measured with a little reassurance from Brian, and his blood pressure and pulse were done without tears. Ten leads were placed on his chest, and an electrocardiogram was performed. The technician printed him his own sheet of graph paper striped with the jagged peaks and valleys of his heartbeat. The lights were then turned down, and I snuggled up to Erik on the bed as the skin on his bare chest was dotted with more stickers clipped with wires. Even Stinky had a sticker placed on top of his head.

It was over before we knew it. No sedation required. As an added bonus, the technician now is quite knowledgeable about steam tractors.

After the study, Dr. T came in to explain what she had seen on the study. Miraculously, there is no narrowing whatsoever in the blood vessels they imaged. Surprisingly, the study was suggestive of a bicuspid aortic valve (or two of three leaflets sticking together), and they will look at this again next year. However, this was merely an incidental finding.

We said our goodbyes, and a photo was snapped of Erik to place on the wall. We then walked over to the orthopedic center to look for our neighbor behind the coffee counter, but she was not working yet. The woman working in her place assured Erik she would tell her he had stopped by to visit, and I bought a couple chocolate chip cookies before we headed back home.

Breakfast with Erik Quinn

2008-11-17T12:27:00.001-08:00

Our echo is scheduled for tomorrow morning at 8. I will bring DVDs with us and see if Erik can get through it without sedation but will not feed him breakfast in case we need to put him under. Because of his anxiety about being in a medical setting and his tendency to be in constant motion, I suspect sedation will be required. If all goes well, we will only need to have one more yearly echocardiogram when Erik turns 5. I can hardly stand this.

The following video is a bit dark, but I shot it this morning during breakfast and hope you enjoy it. Erik is a morning person just like his old mama.

Lock Up When You Leave

2008-11-15T06:42:00.001-08:00

Will I ride the summer winds
or dance upon the crimson horizon
Will I find paradise in hell
If I go deep into the woods
If I go to this cabin

-- "This Old Cabin" (Agalloch)

You might remember that I used to daydream about hiding in a log cabin when my heart simply could not take any more pain. I would place Erik on the soft, braided rug that cushioned him from the rough planks of the floor to play. I would light a fire and bake something that filled the room with the scent of cinnamon and vanilla. The red and white gingham curtains would always be drawn tightly shut over the little glass panes above the kitchen sink. The place felt ancient and worn but gave me so much comfort. The two of us were always snuggled inside, away from the world. We were perfectly bonded as mother and child there, and no words seemed to be necessary. I never saw what was outside and had no desire to peer into the darkness that seemed to surround us. In fact, I can't remember the place having any other windows at all. It was the strangest daydream I ever had. I used to go there quite often.

I have no idea how or why.

I can remember the place vividly in my mind, but I haven't been there for well over a year now. Sometimes I want to return to air the place out, but I know that is an excuse to poke around and see the place clearly, which I was not meant to do. We seem to have made our way out of darkness of the thick forest for good. I am still sad that I can't seem to find my way back. I suppose it served its purpose.

I have always wondered if people can detect the secret that is inscribed on Erik's DNA. I have heard that it is sometimes visible in his smile or on his face when he cries. The sheer horror of the diagnosis has faded after being exposed to daylight over the past couple of years, and I now find myself curious about the way the world sees him. Maybe that stems from a little fear, too.

I remember the day I knew my baby was different. I held a friend's infant on my lap. When this animated little girl smiled at me and simply moved her body, I saw everything clearly. The room began to spin, and I swallowed hard to fight the urge to vomit. I can't remember exactly what I said to my friend, but she definitely remembers that day, too. That was the exact moment I saw what had been lost. It just happened to be wrapped in soft, sweetly scented baby clothes cradled in my lap. A few days later I found the cabin in the woods.

I can still see the differences in Erik as he grows, and I am becoming comfortable with them. Hell, I even love most of them. At the same time, though, I'm blind to how the rest of the world sees him. It is not my place to see him any other way than I do. Sometimes, though, I wish I could step outside of myself and take a look. Maybe it's not important. I just feel that it might give me more tools to help him find his way somehow. I just don't want anything to injure me so badly that I feel like hiding again. There are some things, I suppose, that I am not meant to see.

Erik and I are no longer hidden from the world. Our interactions with it have been mostly wonderful, but we are still incredibly new at this. If I am asking questions, I think I am ready to open my eyes and tackle what comes our way.

There's no turning back now.

I just hope that the woman who discovers that strange little cabin next takes comfort in the faint scent of cinnamon left behind and the warmth of the fire she will eventually learn to build. I really miss that place.

However, it's time for me to leave it for her to find.

Updated Vital Stats 2008

2008-11-14T05:23:00.000-08:00

Name: Erik Quinn (a.k.a. Skooby, Booga, "E," Love Bug, Buddy, Baby Boy, Cute Stuff)

Hair: Dirty blonde

Eyes: Blue-gray with lacy starbursts that drive the ladies wild

Age: 4 years and change

Sign: Libra

Weight: Probably well over 35 pounds now

Height: Darn tall with long legs (over 50th percentile for typical children)

Likes: Cookies of any sort, Boppa and Gua, monster trucks, John Deere steam tractors, making up words and laughing, playing the keyboard, You Tube, dinner parties, Stinky Dog, church (more cookies), light reading, PB&J, laundry, running, playing in dirt/sand, and being told "yes."

Dislikes: Doctors/nurses, vegetables, having to go inside after being outside, loud noises, sitting still, babies, anything stinky (excluding Stinky Dog), Gracie-Cat, and being told "no."

Recommended Reading: Big Joe's Trailer Truck by Joe Mathieu

Favorite Music: Wiggles and Doodlebops

Favorite Toys: Stinky Dog, Salad spinner (best wedding gift EVER), and trucks.

Can: Walk AND run (a little shaky at times but very fast), do somersaults, sleep in big boy bed with safety rail, eat in a relatively civilized manner with fork and spoon, kiss with kissing noises, construct impressive sentences, sing, blow dandy bubbles, wave, identify numbers and count, identify letters and some of their corresponding sounds, and remember the names of people and the vehicles they drive.

Working On: Sensitivity to sound (much better), headstands, tightness in Achilles and other body parts, ascending and descending stairs, stability with movement, picking up toys, following instructions consistently, eating a greater variety of foods, and feeling more comfortable around children (much better).

Latest Phrases

"You wouldn't understand."

"Looks like poop."

"Smells like woof."

"See you in the meow!"

"See ya, wouldn't wanna be ya."

"Mama, can you cuddle for me, please?"

"It's wake up time!"

Secret

2008-11-13T16:00:00.000-08:00

The following is a post is dedicated to the women warriors in my support group. I love you guys. You are never alone. -- N

I remember the last time I accepted an invitation to have cocktails with a group of mothers I had never met before. How awkward it felt. How I felt like I had a dirty secret when I didn't immediately disclose the fact my son has a disability and how seriously f*cked up it all seemed after I did. I actually felt horrible for days afterwards. See, I can't win. No matter how I approached it, the evening was destined to be a complete disaster of epic proportions. Oh the humanity! In the end, I was forced to listen to women describing the artistic journeys of self-discovery their children were on...learning to make independent films, discovering natural athletic abilities, winning a series of prestigious awards, selecting a lifetime mate, picking out the perfect hue for bridesmaids' dresses, and writing the Great American Novel at the same time!

All while I wished my son could climb a flight of stairs without using his hands.

Finally, they turned their attention to me, and I was asked what preschool my son attended. After a small anxiety attack and trying to avoid answering the question, I was finally encouraged to reveal the name of the school he attends, which was then followed by a long stretch of uncomfortable silence. They were perfectly lovely people, but we weren't trained to really deal with each other. Instead, they sipped their neat, fruity concoctions in martini glasses, and I flagged down the waitress to ask her to bring me yet another whiskey. My explanation, which had not been practiced enough yet to sound smooth and comfortable, only made things more awkward. I felt horrible for me. I felt horrible for them. Although I harbored no resentment towards them, it was obvious that we lived in different worlds. That we spoke different languages. I can finally accept that.

Life is different these days. I have found a freedom I suspect many mothers have never dreamed of. I fantasize about being envied for it eventually. I am proud to say that I can look back at these moments and (ahem) at least begin to laugh. It's true. Don't get me wrong. I still avoid these situations like the plague, as I am not into torturing myself or others, but if I find myself in the middle of them without any sort of warning, I can laugh about it later.

Because now I truly have a secret.

THERE IS NO NORMAL!

Once I realized that this summer, a weight was lifted from my shoulders. Thank GOD! My good friend Laura, mother of beautiful Michaela, posted this, and I laughed. Long and hard. Watch the two women on the right.