Erik Quinn: The Heart of a Family: December 2007

Monday, December 31, 2007

More Insomnia

I am glad eBay and Amazon are open 24 hours a day. I just bought a belly ring, a food chopper, and two cookbooks.

The following meme is from my blog-buddy Kathi.

Three Things...

Three things that scare me

1. Surprises
2. Needles
3. Michael Flatley, Lord of the Dance

Three things I love

1. My family
2. My friends
3. Making my friends and family giggle like little girls

Three things I hate

1. Cruelty
2. Ignorance
3. Raccoons

Three things I don't understand

1. War
2. Office politics
3. Mathematics

Three things on my desk

1. A lifetime supply of Grins & Giggles lotion that gave Erik a rash
2. A notebook bulging with special education and EI forms
3. Taber's Cylopedic Medical Dictionary

Three things I'm doing right now

1. Wishing I could freaking sleep
2. Telling my whining cat to SHUT UP
3. Wondering if the coffeemaker is too noisy at this hour

Three things I want to do before I die

1. Make sure Erik will be taken care of if he is still living
2. Write a book
3. Fall asleep so I don't see it coming

Three things I can do well

1. Write (working on it, anyway)
2. Give strangers nicknames (quietly)
3. Tell stories and crack myself up, ruining them all instantly

Three things I can't do

1. Be in a plane without humming "Chantilly Lace" or "Walking After Midnight"
2. Eat squash or any type of cooked gourd without gagging
3. Successfully iron clothing

Three things I should listen to

1. God
2. My gut
3. My friends

Three things I shouldn't listen to

1. People who JUDGE ME for who I am or what I do/don't do
2. The voices in my head that make me second guess myself
3. Slim Whitman albums

Three things I watched as a kid

1. The Muppet Show
2. Those cool 70s Dolly Madison-sponsored holiday specials
3. Night Flight (don't tell my mother)

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Sunday, December 30, 2007

Mirror Images

After I had been awake for a couple hours today, I worked out. Hard. I could actually feel my pulse in my eyeballs. I was bound and determined to sweat the blues out of me, at least temporarily. I then took a long, lukewarm shower. One of the two WS families I know in the state rented a house in a resort south of town for the New Year's holiday and had previously invited me to call their cell phone to make arrangements to meet. Because this is such a special opportunity for our family that only rarely makes itself available, I sat down after I could speak in complete sentences again and dialed their number, arranging a visit in the afternoon. Just hearing Heather's voice immediately lifted my spirits. I told Erik we were going to see Sophie, and he seemed unusually excited. I put him down for an early nap, but after he rolled around playing with toys on his floor for an hour, I went in to check on him and he said, "Go see Sophie." I sprung him from his room, told Brian we were itching to go, and loaded the car. We had to drive just 20 minutes, but the pathetic film of wet snow we have been trying to maintain here progressively thickened into a fluffy blanket with each mile and began to encroach on the road. By the time we arrived, the landscape looked like winter did here in the old days, and we located their cabinlike rental nestled in lanky, towering pine trees.

Our visit was truly enjoyable. There were two other couples and their (typical) children staying there for vacation whom we had previously met at Sophie's Run, the yearly 5K race for Sophie and Williams syndrome awareness. Because the race is so incredibly busy for all of us and our extended families, we have not had much of a chance to sit down and talk about whatever we wanted in a quiet setting. Erik was a bit edgy around the two babies present but soon warmed up and was singing and chatting, putting his hand up to feel the texture of Nate's goatee and getting his hands in modeling clay with the two older girls. It was a wonderful, relaxing afternoon. Once Erik began to wilt, we decided to head home, promising to meet again at the run in just four short months.

On the way home, we decided we were hungry and that deep-fried jalapeno wontons from our favorite roadhouse sounded wonderful. We risked a meltdown from our exhausted son, sat down at a table, and ordered our favorite dishes. Erik lasted maybe 10 to 15 minutes before I found myself walking him around the restaurant. A small cup of primary-colored crayons and a children's menu are less than tempting to Erik. When we tried to settle back into our seats, he was absolutely furious and wanted to go home. I sucked what I could of my mixed drink from its giant Mason jar through a straw like a rabid hummingbird and grabbed Erik. We jogged to the car, and I put the Scooby Doo theme song on the stereo. We listened to it approximately 12 times while Brian paid our check and had our dinners boxed up to take home. The waitress, not knowing how exhausted Erik was or exactly why we were leaving, assumed it was their fault and gave us five dollars off our meals. Score.

We are all winding down now. Erik had a short nap while we ravaged our meals like happy animals in front of the television, and I am relaxed once again. I'm looking forward to the New Year and starting anew. The end of any year just isn't my idea of a great time and never has been. I hate looking back at the year, no matter what my situation is, and would like to begin looking forward. However, I'm extremely thankful for this afternoon.

I can't believe it. It ended up being a great day after all.

Sophie and Erik. We neglected to get a photo until we were on our way out the door. Sophie is 5 years old and thriving in every way, and Erik is nearly as tall as she is! This must be due to all of the peanut butter sandwiches I keep feeding him. And the fact Erik is wearing thick-soled shoes and orthotics. Still, he's a tall drink of water.

Erik in the car in the restuarant parking lot listening to the Scooby Doo theme song. That's funny--he wasn't this cheerful inside the restaurant mere minutes before this photo was taken.

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I am heavy today.

My limbs are weighted with lead,
and my brain's a stone.

There is no quick fix for this plight.
No magic elixir in pretty glass bottles
or plastic cylinders with printed labels.
Apologies, sleep, spirits, prayers, bandages, regret, and effort
are of no use to me when I am this way.

My heart squirms, anxious and restless in its cage of bone,
yearning to be free but knowing it would dry up on its own.
I wish it would just crawl off and leave me, anyway,
like a glistening slug leaving a shiny, crimson trail.
But it won't. It never does.


No more brow furrows or distant whispers.
Just leave me alone to lie in a twist on my bed
and wait for relief from this indolent misery.
It will come eventually. It always does.

I am sorry.

But I am heavy today.

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Saturday, December 29, 2007

Fun Down Under

Brian and I planned to watch the OSU bowl game at my favorite local brewery last night. My folks came over to watch Erik, and we headed downtown through a chilly evening with snow intermittently spitting from the sky. We reached the popular hotel and pub, a quaint compound of buildings that was once our town's Catholic grade school, and headed for the building in which there is a giant movie screen, a fleet of comfortable, chunky living room furniture, and a full menu to enjoy. Unfortunately, the place was packed. After one tour around the large room, we saw that the mismatched armchairs and loveseats that did not contain football fans were draped with coats and scarves, indicating they were already occupied, so we left.

We drove through the crowded holiday mess downtown and hit the parkway before deciding to choose between one of two places: An unpopular Mexican restaurant lounge where we could easily commandeer the television remote or the Outback Steakhouse, a crowded choice on a Friday night but a place that houses a gigantic bar and at least two televisions. Going home was NOT an option. We drove to the Outback and found fairly comfy bar stools (I reminded myself that I am much less comfortable actually attending a game and having to sit on cement bleachers) and ordered cocktails, lobster/crab cakes, and grilled shrimp. The people watching was simply outstanding. I found myself more enthusiastic about that than the actual game. Across the bar sat three men in strange, flat-brimmed hats, looking like the Three Amigos. One gentleman ordered a Coors Light with a strange hillbilly twang that would have made Garth Brooks proud. Brian and I decided we found ourselves confused by their attire. I commented that the flat brim of each hat looked quite aerodynamic, and I made a soft whooshing sound when one passed by on his way to the restroom. A petite thing with a rounded bubble of blond hair sat on the stool to my right and occasionally sent items from her plate back to the kitchen. Since I am not normally much for a slab of bloody meat, and the overenthusiastic jumble of spices the restaurant rolls their food in tends to cause heart palpitations and night sweats in me, I very wisely chose the grilled chicken and vegetables. Brian chose steak, a grainy, bloody plank of fat-rimmed beef accompanied by some admittedly tasty french fries. We ate our dinners bathed in the bright light of neon kangaroos.

I thought a lot about the fact that most Americans, including myself, are horribly ignorant about other countries and the people who live in them. I also thought about how sad it was that the place innocently tends to nurture the assumption that Australians are all unusually friendly country folk who drink Fosters all day, talk funny, raise cows, and throw boomerangs in their spare time. Ironically, most of the food offered at The Outback is Creole/American, anyway, with little to no Australian influence that I could detect. I have learned much about the world in the last three years by communicating with many people in different countries. I now know for a fact that there are many people in Australia who have children who look an awful lot like my own son. I also know that these families have the same joys and heartbreak I do. They are some of the nicest people I have ever met, and they are a lot like me, no matter where they might live. Amazingly, I felt a little homesick for the people and places I have never seen.

I have learned that Williams syndrome is everywhere. Thankfully, so is Fosters. :)

We watched OSU fight its way to victory in a less than attractive manner, and in the fourth quarter we ordered coffee and a monstrous chocolate sundae with two spoons. The family dinner crowd was replaced by younger patrons, mostly in pairs, and we soon gathered our things and drove home, where a very excited boy bounced up and down on his mattress in his room and giggled, content as could be.

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Thursday, December 27, 2007

Christmas 2007

Christmas 2007 is now history. Brian's parents, my parents, my grandmother, my brother and his wife, and my uncle came to celebrate the holiday with us here, and it was a relatively relaxing, worry-free holiday. Unfortunately, this was preceded by three days of head-shattering migraine headache that kept me in a drug-induced stupor which very sadly failed to make a dent in the pain. As it turned out, my very last resort, a single muscle relaxant recommended by one of my best friends, loosened its death grip on me just before the holiday began, and I was finally able to prepare for the holiday and enjoy myself.

We all gathered around the tree to open presents after our traditional Christmas Eve dinner of hot clam chowder and bread, and Erik opened presents for the first time as if he had been doing it for years. This was the only time I felt close to being emotional about much of anything. I watched his meaty fingers find weaknesses in the festive paper and rip, exposing the colorful goodies inside. He cocked his head as he examined each gift, finding himself entranced by some of them, especially the book my mother made for him with photos of vehicles like the ones driven by the people he knows and loves.

Generally speaking, children with WS have little to no interest in toys most children find fascinating. Getting my kid to pretend play with toys is almost impossible unless there is a toy car with spinning wheels involved. Play sets collect dust in the closet or are packed up to take to the children at his school who cannot afford them. Thankfully, all of the gifts Erik received were wonderful with an obvious degree of thought about his personality and disorder behind them. When I sat down to read blogs yesterday, I was relieved to see that Tara and Bob, fellow WS parents, echoed a lot of my feelings about gifts and toys for our children. Tara explained that Dr. Mervis, a WS researcher at the University of Louisville, once told her, "Most children with WS do not play with toys. They watch their parents play with their toys." It's true, and it's one more reason I feel ripped off. However, Tara also explained that her daughter's joy is "about being surrounded by her family and unwrapping and tearing every piece of paper in sight." I found myself busy around the house at times I might feel sadness seeping in, and it didn't really touch me this holiday. On Christmas Day, my good china dishes emerged from their dark places in my cupboards, and the plates were soon heaped with a feast I had assistance preparing: Ham, turkey, cranberry salad, stuffing, green bean casserole, bread, and pies. My mother brought a tiny one-layer cake with her part of the feast, and after dinner we sang "Happy Birthday" to Jesus, something that seemed a little strange while I planned the holiday but instantly became a brand new, natural tradition when I saw the amazed look on Erik's face as we all began to sing.

Last night Brian ran hot water into our jetted tub and added raspberry-vanilla bath salts, which smelled wonderful. We extinguished the lights and opened the blinds covering the windows around us that point towards the desert landscape. Light from the chunky bulbs of our twinkling Christmas lights that Brian strung along the rain gutters outside zipped around the house above us as the scented steam rose from the water's surface. I took a deep breath and realized that I successfully survived another holiday. I actually felt as if I had accomplished something. I realized that gatherings feel like work now. I feel like I am swimming against a strong current and am constantly laboring. I wonder if I will ever truly be able to relax and enjoy Christmas with the same trust that all will be perfect ever again, or if I will always be holding my breath waiting for the next wave of emotion to hit me. They will never be the same, but maybe holidays like this will be an adequate break in this crazy life to at least stop and count my blessings. The turkey, trimmings, and gifts seem sort of ridiculous to me now, but they are a welcome distraction and a big dose of what is deemed "normal" in this chapter of the American Dream. I guess could use a little more normal in each and every day. I just wonder if this new numbness I feel will ever subside. Maybe it's best that it does not.

Oh. Just one more thing. Santa brought me a Chia pet.

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Thursday, December 20, 2007

I Hate You, Mom

We made a trip to see Dr. Mike, the silver fox with a DDS, yesterday. Erik and I arrived early, of course, as I am pathologically early to everything, and he amused himself with the spinning wheels of a giant wooden bus in the matchbox-sized waiting room. Two female assistants who seemed to despise each other led us back through a short maze of tiny hallways to an open room containing two reclining examination chairs, a few matching chairs on caster wheels, and a craptastic collection of dolls, stuffed animals, balls, books, and Magnadoodles. One assistant closed a nearby examining room door to prevent any shrill noises from upsetting Erik following the short version of my speech regarding hyperacusis. They asked me questions, which I answered halfassedly as I chased my crawling son, who found a metal cart of dental tools and suctioning equipment much more enticing than any toy or book available. As I maneuvered around the brightly colored clutter in the office pursuing Erik, I caught the tip of my pointy-toed boot on a large wooden play center that was apparently screwed to the floor at a jaunty angle. I tripped, of course, and recovered by following up with a spectacular hop-hop-hop-hop-hop type of maneuver on one leg while one assistant looked up from Erik's chart with a dryly amused look on her face. As I was on edge anyway, I only narrowly avoided screaming, "There's your lawsuit, bitches!" I regained my balance and composure and sat with Erik in my lap as Dr. Mike emerged from his work on a small patient with a rather impressive, bass-like gape.

Dr. Mike's routine makes my skin crawl. He is kind but barks sharp yet barely audible orders through a wall of white teeth to his assistants, and they obey, jumping as if the floor is suddenly one thousand degrees. Dr. Mike began by examining a doughy-faced Cabbage Patch-type doll with a small, plastic mirror. He then announced to Erik that he was going to examine my "pretty finger" and, to my horror, took one of my man hands in his own, making it readily apparent to all I am in desperate need of a manicure. Nice. He then asked me to hold Erik down as he forced his mouth open and examined Erik's teeth, never letting his own wide smile falter in the slightest. Tears squirted from Erik's eyes, and his face became a deep scarlet. His strange infant cry began and intensified, breaking my heart into a million pieces. Thankfully, as I am a veteran parent of many of these types of pediatric examinations, I smiled my own plastic smile and cooed reassuringly, knowing Erik was far away in that place where he can no longer hear my voice. I went through the motions, anyway, like any good parent should.

The exam was over before I knew it. Dr. Mike said no lacquer was necessary, despite the fact the assistants had it ready and insisted Erik received it before (he has not). Dr. Mike made it quite clear I was taking perfect care of Erik's choppers, and, amazingly, his permasmile widened a little as he patted me firmly on the shoulder and made his exit. We were handed a bright blue balloon with the name of the office printed on it and asked to schedule our next appointment for the summer. The girl at the desk, obviously a meteorologist in her spare time, informed me it would be warm and sunny the next time we came to see Dr. Mike in July. I said that I hoped it would, giggled vapidly along with her, and led Erik out into the main lobby. He smiled at everyone as we left and charmed them all.

Seconds later, Erik's smile faded completely. He glared up at me and began to demonstrate the strange hand flapping I have read about in all of my WS literature but had never witnessed. His face reddened once again, and angry, hurt noises came out of his mouth and throat. Words were no longer adequate or necessary.

No doubt about it. He was PISSED.

It was quite apparent that he was angry at me and me alone for bringing him to this awful place of Nazi medical techniques festooned in primary colors and bobbing helium balloons. My boy may have his challenges, but he's far from an idiot. He knows a medical facility when he sees one. I next attempted to coax him out the door into the parking lot, but he stood there raging at me, hands flapping wildly as if he was planning on taking off into the air. When I approached him, his hands began slapping against any part of me he could get his hands on. He continued his miniature slap assault, some of which actually hurt, as I stooped down to his level to whisper that he needed to calm down. Instead, he shoved me and actually growled. I freed the helium balloon from my sweaty palm to settle against a scratchy panel of acoustical tile in the ceiling and picked him up under one arm, attempting to balance my purse and the ridiculous, Barbie-sized bag of crap pediatric dentists hand out in my other arm, readying my car keys. I very calmly carried the screaming, kicking 35-plus pounds of livid boy into the slushy parking lot, where I held him down to strap him into his seat and made it to my place behind the steering wheel without spilling a tear, even though my heart was injured. I found my iPod and pressed play, turning up the volume and trying to ignore the flailing soles of the little tennis shoes behind me wreaking havoc on the seat in front of them.

By the time we completed our five-minute drive to his grandparents' house, he was a singing, giggling, delighted angel, ready to charm the world again.

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Wednesday, December 19, 2007

Wunnerful Wunnerful

Random Thought of the Day: I think anything by Mannheim Steamroller is hopelessly silly (unless there is some sort of cool laser light show involved).

I sang with Erik this week during our daily cuddle time on the couch after his nap, and when we finished a song, he said, "Wonderful." It was very Lawrence Welk (without the accent).

I'm considering having the fasteners on Erik's leg braces redone. The Velcro is not sticking well anymore. At this point, I can't imagine he will be out of them anytime soon. If we leave them off for even one day, he goes right back up on his toes. I usually leave him out of them at home and let him run unfettered, but when we are out in public and he is unsteady, they work wonders, as he falls less. His left toe continues to swing in, especially when he is out and about.

Erik has an appointment with Dr. Mike, my favorite dentist, today. Brian took him last time while I attended a parent meeting, and he said it was brutal but quick. We are going in every six months, and so far he has not needed the lacquer to protect his teeth. I don't plan on having work today, and we will go to my folks' house afterwards, where I will enjoy a glass of wine and try to relax.

My holiday menu planning is complete, and I am looking forward to having everyone here this year, especially my little brother and his wife. I am baking a turkey, and my mother is bringing over a ham. Brian has twinkling white lights up on the house.

A WS family from out of town e-mailed me and told me they will be here to celebrate the New Year. They invited us over to the house they rented at a nearby resort for a play date. I have said it before, and I'll say it again. There is just nothing quite like being around another family wearing our shoes. I can relax and actually think about WS less. What consumes me a lot of the time simply loses its power. When I'm with another WS family, I am able to feel like a NORMAL mother, and I don't worry about what anybody else is thinking about me or my kid. I savor every moment of it.

I am missing the other families I know and hope to see them more and create more memories in 2008!

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Monday, December 17, 2007

Five Things I am Not

My life is ever so perfect
My life has been a bed of roses
And you might think I'm crazy
So what if I am
My head is full of good things
Enough for everyone

-- "Beautiful" The Go Gos

The following meme is courtesy of my friend Kathi. I feel like a lot of us in Willy World are looking for a fun distraction to ease us through the emotional chaos of the holiday season. Voila! Thanks, Kathi!


1. Petite. I am nearly 5'10" (over 6' in heels) and weigh a lot more than one would think (I hope). My shoe size is between 9 and 10 after having Erik. I also have man-hands, as my best friends' rings will only fit on my little fingers. One day when I was shopping at Macy's, a saleslady told me that since she could see me over the rack of clothes I was browsing, she was quite certain I was in the wrong section. Sure enough, I was in petites.

2. A socialite. I am slowly but surely learning to appreciate a good party or casual banter with strangers at the store. I actually told someone I didn't know the other day that I loved her shoes, and the adorable, surprised reaction I got made me smile all day. It's actually a lot of fun talking to people. I only wish that I was more confident in this area. Because of Erik, I am getting there.

3. Judgmental. At least, I try not to be. If we were all the same, the world would be one big yawn to me. I have to admit I don't generally mix well with people who are judgmental or mean. Is that being judgmental in itself? Uh oh. Yes, these are the things I lose sleep over.

4. A risk taker. I used to live as if I were invincible, but in my 30s I discovered the joy of stability. Maybe my 40s will bring a more adventurous spirit and the desire to leap off a bridge wearing bungee cords.

5. Graceful (see number one). I am probably the most likely of all of my friends to fall, sever a limb, or run into walls. On the day I got married, I injured myself very badly several times by playfully leaping in my wedding dress onto unfamiliar furniture inside our honeymoon suite. I ended up going to Mexico the next day covered in green and black bruises, looking as if Brian had beaten the dickens out of me or I had been in the center of a mosh pit.

So there you have it. Play along if you would like!


Saturday, December 15, 2007

Erik Sings

Check out the new Gabcast recording on my sidebar. I made this particular one as we all snuggled in bed this very lazy Saturday morning. Erik and I sang over his father, who was attempting to sleep in. The children he names in the song are two of his friends, Dominick and Baby Cecilia (Ce-Ce-Ya-Ya).

Coffee's on, if you are interested!

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Friday, December 14, 2007


Erik and I recently discovered the joy of singing songs in unison. He would previously immediately cease singing if I joined in, but now his confidence level and his memory of many lyrics have made it possible for him to just belt out whatever is in his heart without hesitation. He looked surprised and pleased the first time we sang an entire song together.

We sang "Happy Birthday," easily his favorite song, to everyone we could think of last night, including ourselves, over and over until we giggled and couldn't sing anymore. Towards the end of each round, he would very slowly pick his thick, strong hands up from his lap and hold them in the air, ready for enthusiastic applause and a few "yays" for each of our friends and family members as we finished each song.

I'm fairly good with words, but it's difficult for me to explain how I feel about doing this with him. The look that washes over his face while he sings actually disturbed me at first, because it almost appears as if he is suddenly possessed by someone else--an older boy whom I have never met. His smile widens, exposing the adorable collection of his baby-white teeth, including the cute little points of his incisors, his blue-gray eyes squint until they are practically closed, hiding their beautiful, lacy starbursts, and his slightly raspy voice begins to boom out with newly-found confidence, a little on the monotone side but filled with nothing but pure joy. I have not seen this particular expression on his face at any other time. Now that he has discovered he can sing along with his old mom, I feel like I am sharing something new and extremely special with him. It took me many painful months to really bond with this child after he came into this world, and I accept each and every one of these moments gladly and with open arms. I'm sure it sounds over-the-top corny, but I feel as if I am in the midst of something almost holy and magical when he sings in this blissful state. I have read stacks of studies about music and the brains of those with WS, but witnessing the connection actually happen is quite easily enough to cover me in a layer of goosebumps. I am far from the most religious person in the world, but Erik seems to be my own personal window into what heaven must be like--what it just HAS to be like. Joy like this isn't created by some random genetic accident. Or is it?

We are planning on singing "Happy Birthday" to Jesus this Christmas. If there is a better, more appropriate way to celebrate the holiday, I honestly don't know what it could possibly be.

He'll be the squinty-eyed, blond angel smiling from ear to ear. I'll be the one with tears running down my face trying to sing along.

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Thursday, December 13, 2007

First Sick Day

Erik is rarely ill. When he does get a cold, he has it for what seems like five minutes and moves on while it knocks me over onto the couch for a week. His type of severe gastroesophageal reflux has been known to cause horrible ear infections, but his only battle with a bilateral ear infection was bravely fought off without the use of antibiotics. We all had the stomach flu twice, and Erik was cheerful through most of it while I was face down on the bathroom tile for three days.

On the flip side, because Erik is never sick, I fret when he is. It's shocking to me to see his body turning on him. I'm guessing we picked up a virus from school this week. He filled one leg of his pajamas yesterday morning with what seemed like a bucket of poop. He was cheerful, despite his plight, and was simply thrilled to have an extra bath as I tried to figure out how to begin to begin the mop up process. I bet Billy Mays of OxyClean fame has never had the need to tackle the task of removing a bucketful of diarrhea from the leg of footie PJs before. Let's see that on an infomercial! Erik got sick this way a couple more times throughout the day in mercifully smaller amounts, but I still thought everything was okay. I took him to pool therapy, where he did well, and there were no embarrassing accidents.

When I picked Erik up, his therapist asked if I would be willing to allow him demonstrate pool therapy for the facility's open house in February. She explained that Erik is just wonderful in terms of letting her do whatever to him for therapy and that she would love to be in the pool with him. As she asked for my permission, she kissed the side of his wet head several times. Free therapy and fun in the pool for Erik. Hmmm. Twist my arm. This is my baby's first modeling gig!

I fixed Malt O Meal, Erik's favorite food that is easy on the stomach, for his dinner. He ate a couple bites at a time but seemed off. At 1 a.m., he began screeching with more of the same problem and a fiery-red bottom. At this point, I was thoroughly freaked out and had my nose in the dusty toddler care books in my office. Of course, there is nothing one can do besides offer sips of water and keep track of what is happening as you let the malady--uh, run its course. I am just no good at having a sick child. Again, these things make me realize how lucky I am to have a kid who has a much better than average immune system.

Today I will keep him quarantined at the house. I'm low on sleep again and will likely have no work, so I will don my favorite sweats and let myself have a sick day with Erik.

It's a sad day when there will be no snacking on cookies, but we will somehow survive.


Wednesday, December 12, 2007

Spicy Beef Stew

I am feeling quite proud of myself. I scored four pounds of free beef at the store yesterday. If you are home all afternoon and would like the house to smell lovely, I recommend this recipe. My husband loves it.

2 lbs lean beef (preferably chuck roast)
2 large onions, cut into wedges
1 lb new potatoes, cut in half
1 lb baby carrots
1-1/2 Tbsp Italian seasoning
2 tsp beef bouillon granules
2 tsp salt
1 tsp black pepper
2 cans (11.5 oz each) hot and spicy vegetable juice

Cut beef into 1 to 1-1/2-inch cubes; place in a 4-1/2-quart Dutch oven. Add all other ingredients. Bring mixture to a boil over medium-high heat; cover and transfer to oven.

Bake 4 hours at 250 degrees. Do not peek. Do not stir. Garnish with chopped fresh parsley if desired. Serve with cornbread.



Tuesday, December 11, 2007


I have a moment to myself before the morning routine begins.

Work is very light this week, which means I have had a lot of time to think. This probably isn't a good thing. A bored Nancy is a dangerous Nancy, indeed. However, I am enjoying my time off and am almost ready for Christmas. If all goes as planned, we will have a house full of people. It has been nearly two years since I have seen my brother and his wife, and I am beyond excited for them to see Erik as a toddler. He was an adorable little blob when they saw him last.

My thoughts --

I'm terrified of gaining all of the weight I lost back, although I have been successfully keeping it off and remain in my new dress size. I haven't been this size since college. My wedding dress is even too big. It was a complete surprise to me that keeping weight off is far more difficult than losing it. Thankfully, I have the tools on line to keep a food journal and can tweak my diet accordingly to keep myself on track. I am still working out daily and plan on continuing this habit forever. My fears seem silly now that I type about them, but I can't express how much I never want to go back to the way I was ever again. My neighbor and I went out on Saturday to the local tavern to play video poker and hang out with some of her friends, and they were all very sweet to me in terms of what I have accomplished. Moments like these help me realize how hard I have worked and how far I have come. I was shocked to see that I now have those freaky, bulging muscles on my shins my mother has always had.

As for the girl I am inside, I would love to evict her sometimes. Lately I have become more closed in terms of sharing my emotions because I no longer want to expose them to the light for all to see. Keeping an online journal is difficult, and after a while I find myself saying the same things over and over. I can only imagine how crazy my readers think I am. At least you all are too polite to say anything. I made a promise to myself to keep going at least until the two-year mark next spring. I have nearly 400 posts now. Can you believe it? I can feel myself approaching my limit, though, in terms of opening the door and making myself vulnerable on an almost daily basis. Looking back, I'm amazed at what has come out here and the sheer volume of what I have said. I am just getting to the point where I don't want to talk about me anymore. If you read this, you know me pretty well.

In short, I have finally come to the shocking conclusion that I will never "get over" the fact my son is mentally retarded. Ever. Don't get me wrong -- I love him for who he is. I understand almost everything about him and believe I have accepted what my reality is now. I have been told by others that someday I won't want to change anything about him. I smile at this but deep inside I fight the urge to let my fist fly out and shatter their noses. Even if this were true, I don't want to hear it, especially from someone with a typical child. The fact is, I hate WS because I don't want my kid to suffer. To be ridiculed. To be different. Pure and simple. Yesterday he smiled at me, and my heart simply melted. He gets cuter and cuter every day. I love his laugh, the way he wraps his arms around my neck, and his raspy baby breath in my ear. I love the way he comes up to me and announces the names of construction equipment with so much panache (KOMATSU! SKID STEER! TRACK EXCAVATOR!). He is different, pure and simple, from other children. I am simply mourning the fact I will likely never become a grandmother or watch my son actually enjoy himself on a playground. There is a lot of fun I will never get to experience, and it pisses me off. There is just no other way to say it: This sucks a lot of the time.

It has taken me almost two years to get to this point, and I feel horrible for those on this path behind me who just began their own journeys. So much for wisdom from this source. Barbara, my new author-friend, told me that the pain inside will never fade completely. I will just learn to live with it and need to find things that bring me joy or an outlet for my pain. I have very succcessfully learned to live with what's inside my heart and mind on a day-by-day basis. I guess I'm getting to a point where I don't want the pain to have a voice anymore. I just want it to shut up and sit in the back row so I don't have to listen to it. That's a real step forward for me. There are a lot of other things going on in my brain that are more important that I need to deal with. Things like how to keep the dinner I made from bursting into flames in the pan in front of me. How much gas is required in the car to get me and Erik across town to school in the morning. How to successfully remove a curry stain from my shirt sleeve. Things like that.

Now that I read back over what I wrote, it doesn't seem as negative as I thought it would. I'm getting to a point where I don't want to talk about it because I have talked it to death. I can see that the next step is to find a balance between thinking about WS constantly and shoving it down inside of me only to have it bite me in the ass emotinoally at a later date. Neither is good, in my opinion.

So there you have it. My state of mind. December is probably the worst month of the year for me emotionally. My least favorite holiday is New Year's Eve. If I can get to January 1st, I'm always golden. I'm almost there. While I look forward to celebrating Christmas, I'm really looking forward to 2008 and beginning a brand new chapter.

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Monday, December 10, 2007

Sweet Relief

My cat is cured. The carpets are freshly shampooed. Life is good.

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Saturday, December 08, 2007

A Look Inside My iPod

I can't sleep and I lay and I think
The night is hot and black as ink
Oh God, I need a drink of cool cool rain

-- "Love, Reign O'er Me" by The Who

Insomnia. Gotta love it. Hey, I got three hours of Zs. Here's another look at what's new on my iPod.

"Buddy Holly" by Weezer. A cheerful little song that goes horribly wrong at the end. I'm not entirely sure what the lyrics mean, but I'm pretty sure they both die a dreadful, violent death. Anywho, it rocks.

"Somewhere Only We Know" by Keane. My new favorite song. Instead of a traditional love song, as it was probably intended, I think about the parents out there like me when I hear it. I'll meet y'all at our special spot near the river.

"It's All Been Done" by Barenaked Ladies. My favorite song from this band. A humorous song that explains why we have deja vu from time to time.

"Scooby Dooby Doo." I don't know who did this song, but it sounds like the original. Erik's nickname has always been "Skooby," so I thought it was a must have. My husband asked if I actually paid $1.99 for this (I did). When I play it in the car and it ends, Erik yells, "AGAIN!" Worth every penny.

"Lose Yourself" by Eminem. I'm not normally a huge Eminem fan and certainly don't agree with his views most of the time, but his words are smart, angry, dark poetry. This song is great for working out, but most of the time I blast it in the car when I'm alone and feeling discouraged. It makes me feel as if I can do anything. One of my favorite songs of all time.

"Bye Bye Blackbird" by Joe Cocker. I think I originally heard this song in that Meg Ryan movie where she has a bit of a drinking problem. I blasted this song as I moved carloads of my belongings from my ghetto apartment to the very first house of my own in the pouring rain. If I could choose a song for my funeral, this would be it. Morbid, yes, but it's that good. Makes me feel like I can fly.

"Love, Reign O'er Me" by Pearl Jam . I feel like a bit of a traitor downloading this one instead of the original, but I love it. When we were in Idaho, we saw Reign Over Me, a wonderful movie about successfully surviving the most horrific loss imaginable. The song sounds like a prayer being screamed directly from the heart to the sky. It's in the movie.

"I Believe I Can Fly" by R. Kelly. Classic. I fell in love with this one when I followed the story of Mattie Stepanek, the little boy with dysautonomic mitochondrial myopathy. It was one of his favorite songs before he passed away in 2004. He knew he would fly away, and he did.

"Click Click Boom" by Saliva. Hard stuff. Heavy metal meets rap. Great song for lifting weights or a shift working at a gentlemen's club.

"In the Meantime" by Space Hog. Strange, ominous little song with bite.

"Lean Like a Cholo" by Down. Yeah, I'm officially the whitest girl on the planet, but I can't help but love this song. Reminds me of the old days when we would go to the nasty little club in the next town and dance until the point of exhaustion, soaked in sweat and rude splashes from passing trays loaded with plastic cups of 25-cent beer. Elbows up...side to side...

UPDATE: It's 6:35 a.m. now. I slept for an hour or so on the couch before Erik started crying. I went into his room and crawled into bed with him until he fell back asleep. He was mumbling, "Fire trucks go woo woo woo woo." I never thought I would hate fire trucks, but I do. I feel like throwing eggs at them as they pass.

It's amazing what just an extra hour of sleep will do. Yawn. Tired, but functioning. That's a good thing.

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Thursday, December 06, 2007

Viva Chia

I remember when I lost my mind
There was something so pleasant about that place
Even your emotions have an echo
In so much space

-- "Crazy" (Gnarls Barkley)

I was enjoying a little quiet time watching shamelessly sensational tabloid television the other night when there was a break and the assault of holiday commercials began. The first commercial was for the Chia Cat Grass Planter set.

If you are not familiar with any of the Chia products, you have been living in an extremely deep cave. Over the years, many people have rushed to the Christmas tree to rip open a present, only to find a terra cotta piece of crap just itching to get started moldering on a windowsill. Okay, okay, I admit it. I secretly love the Chia products. They are the cockroaches of the gift-giving world and will likely survive centuries after the demise of such products including the Pocket Fisherman, the anglers' pole ready to produce from a suit pocket if the need arises during a business lunch next to a small body of water, or the Clapper, the name of which always makes me think of a vigorous course of antibiotics.

I am unfamiliar with the Chia Cat planter, but I soon discovered that it is a yellow flowerpot with the ominous-looking likeness of Sylvester the cat peeking around it. You sprinkle the seed mix packet provided into it, pour in a capful of water, and within a matter of days will see green shoots emerge from the provided potting soil. The cat featured in the commercial munches happily on the foilage, and all is well. That is, I imagine, unless precious Fluffy is later tested for the presence of lead.

I planted oat grass for Gracie once. The package claimed it could grow one inch a day in ideal conditions. My house must have been located in a true banana belt, because this stuff grew faster than bamboo (anybody see Creepshow?). It was soon out of control. What made things worse was that Gracie seemed to crave it as if she was addicted to the stuff. It was a feline version of Reefer Madness. She buried her face in it and devoured it violently, spraying chunks of soil around her in a one-mile radius. Between the rampant growth that threatened to take over my home like kuzdu vines and trying to keep my cat from spreading mud from one end of the kitchen to another, it was a disaster. And the vomiting. Oh, God, the vomiting.

In any event, I was calmly sipping my wine when this particular commercial aired. I watched the cat gently nipping at the grass from the crudely-painted planter as if it was at a little salad bar. It was then I felt somethinig strange bubbling up within me through my depression. I chuckled to myself. The chuckles became chortles. Within a matter of seconds, I was in a full-blown giggle attack that was beyond my control, the likes of which I have not experienced since the hormonal hell of my first pregnancy. The more I tried to stifle it, the more intense it became. Butterflies tickled my stomach, and my face began to ache. The fact I was completely alone and likely looked like a complete madwoman made everything that much funnier. All of the senseless, painful crap...everything heavy on my heart and mind...had been easily overtaken by all that was ridiculous in this world. I laughed so hard that I had tears streaming down my face. It was a delicious moment of the bizarre I apparently desparately needed.

Thank goodness for the ridiculous. And thank goodness for the Chia Pet.

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Wednesday, December 05, 2007

Meet the Author

God puts resources there for you. You just have to find them; or, working with your neighbors, create them.

-- Barbara Munster (Author)

I had an amazing opportunity come my way recently and was brave enough to take advantage of it. One year ago as I sat on a horrifically bumpy flight to San Francisco on the first leg of our journey to Hawaii, I finished a book called How the Lilies Grow: Considering the Needs of a Developmentally Disabled Child). It was written by a local woman whose daughter had encephalitis as a child, a condition of the brain which resulted in severe developmental disabilities. The book told the story of this woman's journey through heart wrenching grief and healing before special education existed as we know it today. She found strength through education (specializing in social psychology and public administration) and created resources for her daughter and others through training those who work with the developmentally disabled and programs to empower those with special challenges. Her work still benefits people to this day, and she is still working incredibly hard to make sure opportunities exist for people like Erik who have so much to give but are often ignored. I consider her a true pioneer.

For some strange reason, I spotted her name in some literature that came in the mail from our church. Her e-mail address was there, and I had the overwhelming need to write her a note telling my story and how she had helped me through a rough time, hoping I didn't sound like some sort of weirdo. To my surprise, she replied in the same afternoon and said she would like to meet both me and Erik.

She came to my door this morning with a plate of homemade chocolate chip cookies. She was the opposite of what I expected. I expected someone who seemed...well, old, a little tired-looking, and frail. For one thing, she was my height, if not taller, and her voice sounded a little like a cheerful song. She would go on to tell me that she began singing in some local groups because if she hadn't, she would have simply cried all of the time. In looking at her, it was very hard to imagine this wonderfully strong, comforting woman ever cried at all, even knowing the hell she had been through. And, let me tell you, this woman has truly been through hell. Her stories of the mental health care system of the 60s and 70s will always remain with me. She reported that her daughter, now in her 40s, resides in a new apartment now, a far cry from the conditions at the state hospital back in the old days, attends a day program for those with special needs, and has someone who cares for her at night.

Unfortunately, I was supposed to meet Barbara between services at church last Sunday. I explained what happened and my resultant absence, and she reminded me that God isn't only at church. He is working through so many people in the world surrounding our family. While I talked with her, I realized that I am letting my expectations of how life should look clutter the path we are blazing for our son once again. Church is just one example. I envisioned it as a comforting, safe, loving sanctuary for Erik and our family, and it may be at some point, but it certainly isn't now, and I can't force it to be pleasant or easy. She suggested finding something else to recharge ourselves spiritually instead of killing ourselves to do what is "normal" and "expected." In other words, she very kindly suggested thinking outside the box in terms of what feels right and is good for Erik and our family.

I described my quest to find a balance between obsessing about WS 24 hours a day and denying it exists at all. She very knowingly nodded and said she found that taking a more objective look through education regarding the brain and her daughter's condition provided her much comfort and guessed that my medical background provided me some of the same reassurance. She's right. It's amazing what one step back will do. It can enable you to strip yourself of some of the emotion and rawness that can eat a person from the inside out. A lot of the hysteria, obsession, worry, and guilt can be disposed of this way, at least temporarily, for me. When I step back into my life with a clearer, more clinical picture of what we are dealing with, I can cope with the daily challenges more effectively and, more importantly, understand Erik and what he might be tackling developmentally or physically.

I confessed to her that I drive around neighborhood playgrounds in a bizarre search for one without children playing there just so Erik can have peace. I told her how I am unable to attend regular play dates or many activities the mothers I know do. I told her of the fear I have of taking Erik someplace new with new people and strange sounds. If she was thinking I was crazy, she certainly didn't let it show. She said that although we walk different paths, we are still walking together and offered to be at my side anytime I needed her.

As she stepped through the door to leave, she made sure to say goodbye to Erik, who seemed to instantly love her, and asked if she could give me a hug. I said yes. As Erik and I watched her drive away, I felt as if a prayer had been answered.

She was right.

God works through a lot of people out there in the world. To meet them, sometimes you just have to open your front door.

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Tuesday, December 04, 2007

Helpful Hint #1

Tapazole, a medication used to manage hyperthyroidism, can cause projectile vomiting in cats.

Gracie had a couple good hurls that would make Linda Blair proud. I actually stood with my mouth agape waiting to see if her tiny black and white head would begin spinning around. She did a full review of today's menu, all right.

I will keep her medication at half the dosage for a few days until she adjusts to things.

Yes, it was a good day. After all, I would much rather clean cat vomit from the carpet than the usual steaming bum gravy.

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New Diagnosis

GRACIE UPDATE: The blood test results are in. My half-feral, clinically obese cat has HYPERTHYROIDISM. Hyper. How this happens in a cat her size is beyond me (and even the veterinarian). I am now required to administer medication to my pet just as many times daily as I am to my own son with special needs.

Oh, sure, I was in need of a good distraction from my problems this holiday season, but figuring out how to give this nasty beast a pill twice a day is a bit much. I tried canned food yesterday, and she wasn't having it. She hates meat. She loves margaritas, but somehow I think that might create more problems.

Hopefully, her daily diarrhea will cease now and she will be more comfortable. I'm half-afraid she will become pleasant and agreeable, as we all have endured 10 years of feline freak show at this point. Time will tell. If I didn't love her so darned much, I wouldn't go through all of this. But I do. She is a reminder of much simpler times and doesn't mind being crammed in my armpit at night for a good cuddle.

Wish me luck.

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Monday, December 03, 2007

Hitting The Wall

What makes a king out of a slave? Courage! What makes the flag on the mast to wave? Courage! What makes the elephant charge his tusk in the misty mist, or the dusky dusk? What makes the muskrat guard his musk? Courage! What makes the sphinx the seventh wonder? Courage! What makes the dawn come up like thunder? Courage! What makes the Hottentot so hot? What puts the "ape" in apricot? What have they got that I ain't got?

-- The Cowardly Lion (Wizard of Oz, 1939)

I have decided not to write about what happened at church, at least in graphic detail as I have a tendency to do.

I just can't.

The majority of the time I am one put-together kinda gal. Sure, I'm a little on the shy side, but nothing like I used to be, thanks to Mr. Erik Quinn. I have a generous supply of polite smiles ready to dole out as needed, and the average Joe would never know I have a care in the world as they passed me on the street. I am blessed with the ability to make people laugh to the point of snorting beverages out of their nostrils and consider myself a lot of fun to be around in general. Sure, I have my bad days, but, thankfully, I live and work the majority of the time in the privacy of my home, and nobody has to know what kind of day I am having. Only my friends, family, and on line diary readers have seen me show what the last three years has done to me emotionally here and there. Most days are actually pretty great, anyway. I do know how incredibly lucky I am. How wonderfully blessed I am. I am beyond thankful for what I have. However, the bad days that come occasionally are straight from the depths of hell, and they usually sucker punch me in the stomach without any warning whatsoever.

Sunday I slipped for the first time in public. Big time. I felt myself breaking, and I couldn't stop what was coming. I slipped for all of the world to see. I found myself hopeless and weak, and I can't even begin to talk about it, even here. We went to church...yada, yada, husband steered me out to the car halfway through the service in the driving wind and snow with our son in his arms. He told me that although some everyday situations like church weren't working out at the moment for us, we would learn to find our own way. On the way out the door, we passed a mostly bare Christmas tree with a few slips of paper the youth group had decorated hanging for dear life onto the branches in the storm. As I watched, several of them ripped loose and flew across the street to kiss the surface of the high school athletic field and disappear into the winter sky. I found one I liked, detached it from its twisted wire anchor, and placed it in my purse. When I got home, I placed it on my own tree.

The church called today. I let the answering machine pick up. The woman who discovered me in the downstairs hallway sobbing and pathetic apologized for what happened and asked what it would take to make our lives easier. She said, "We really need to move forward from this." Oh. Okay. Where have they been after they offered to meet with us weeks ago? Where were they when they all went on without us, like the rest of the world tends to do, enjoying the spoils of Christmas plays, cookies, and the scent of coffee in the crowded hallway while we sat at home? Where were they when my son simply glanced at the interior of the nursery on our last few attempts to attend and began sobbing because of his blossoming anxiety and the memory of the sounds of a fussy baby from weeks before? Just what should I do about the fact he doesn't fit in anywhere? The fact we have no place to even SIT when we attend church except for out in the hallway?

Right, let's move on and put this bit of unpleasantness behind us all.

Please. Tell me what to do to move forward. How to keep my heart from breaking when my son is practically begging me to turn the car around instead of visiting a friend and her child because his brain can't process the normal noises children like hers make. What to do when I can't attend my best friends' baby showers ever again because most of the little things associated with babies make me physically ill when I look at them. What to do when my son tries to wrench his hand from mine and run out into traffic, not seeing cars coming, and punches me, kicks me, and growls at me when I restrain him. What to do when we are instructed to bring him to Sunday school despite the fact he can barely hold a crayon. What to do when a police car passes with its siren screeching in the night miles away and he wakes up screaming. What to do when I am increasingly isolated in my own home from my own friends who are raising the typical kids he desperately wants to love but cannot physically stand being around. What to do with a kid that is proving to be exceptional in most areas, despite missing 20-some genes, but who cannot seem to function in the outside world surrounded by his peers. What to do when there is just a little less Erik and a little more Williams syndrome in his face and in his voice each morning I go into his room. Tell me how to move forward. Please.

Because you asked that question, I feel as hopeless and frightened as ever.


I couldn't tell you what would make my life easier at this moment even if I tried.

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Sunday, December 02, 2007


I am having a bad day. Not just sort of bad. Really bad. The kind of day when my grief feels fresh, cutting me open from the inside as if I had not been feeling it until this very moment. The kind that leaves me so weak I have no desire to fight the forces of gravity and want to sag to the ground in a pathetic heap. The kind of grief you might see on the faces of the women in exotic countries wailing on the evening news after a devastating loss. When I am ready, I may write about it. I haven't had a day like this in a long time.

Today I came home from a failed attempt to attend church with my family and began frantically scrubbing the insides of my house like a crazy woman. I scrubbed and scrubbed with various sponges and cleansers, trying to wash the darkness I feel down the drain. The tree has been lit, and its 1800 white lights are sparkling. My pine-scented candle is casting a warm glow on my precious set of antique wise men. My toilet bowls are bleached. My floor is pristine.

In my quest to create the perfect holiday home for our son, I have come to the realization I was wrong. You see, it is ME who is in desperate need a safe haven from the outside world, at least at this point in time. Some place I can feel what I want to feel or, in this case, not feel anything at all until I'm ready.

I am progressively more and more uninterested in dealing with how I feel. When I write, I have to feel everything all over again, and, well, that simply sucks. There are times I simply don't want to feel anything painful or profound at all. Times when I want to plod along and do mundane household chores without a thought in my head at all. Thankfully, I can do that here.

Unfortunately, there is nothing left for me to scrub or straighten.

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