NANCY WAS HERE

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

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."

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
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.

I Cast All My Caries

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

Save That Date!

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

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.

Children's Festival 2009

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

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

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)

More to Come

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.

Confession

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.

Slosh

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

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

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

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.

Broken Record

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

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

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

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.