Erik Quinn: The Heart of a Family: April 2008

Tuesday, April 29, 2008

Sophie's Run 2008

The back of my neck is slightly itchy from overexposure to the sun this weekend, making it even more difficult to believe snowflakes will fall from the sky this afternoon.

Sophie's Run 2008 was incredible. After a gorgeous drive over the mountains and a single stop at a campground to change Erik's diaper, we met Kathy, Alan, Dominick, and Baby Cecilia and checked into our hotel. Our rooms overlooked the river, and we watched the university's crew boats swiftly pass back and forth over the water. We then dined together at a local family-friendly pub near campus and then returned to the hotel to meet Ed and Martin, who were also staying in the same hotel with their friends from Portland who planned to run the race. Before long, it was apparent that Erik was beside himself after a day without sleep, even to the point of slurring his words and staggering about, so we retired for a restless night with the three of us crammed in the same queen-sized bed.

In the morning we met our group for a continental breakfast in the hotel's dining room. There were a couple moments during the day I will never forget. They were big surprises consisting of quiet moments that completely startled me. For example, after breakfast, the three of us stood in front of the elevator. As the heavy door quietly slid open to reveal its passengers, we found ourselves face to face with three other people, the tiniest of whom looked suspiciously like Erik. I heard my name spoken by one of the two women standing in front of us, and I looked up. Although the faces were not familiar, at that very moment I knew that two Williams families were colliding, a relatively rare event in my life. As it turns out, the woman who recognized me and Erik reads my blog and has occasionally corresponded with me via e-mail over the past couple of years. Her daughter and grandson, who happens to have WS, stood next to her. After the initial shock just began to wear off, we exchanged hasty hugs, chatted briefly, and promised to meet up again at the race. Not only is it shocking to just run into another WS family, I can't describe how bizarre it is to encounter someone who knows my deepest, darkest thoughts, especially when I know relatively little about them. Thankfully, they seemed to like me, anyway!

We arrived at the race, and there wasn't a cloud in the sky. If you know anything about Oregon, especially the valley, you know that it rains a lot here. Miraculously, for the third year in a row we were able to enjoy the event bathed in warm sunshine. We were joined by my more of my closest friends from home, family members, and neighbors. The air always seems to be heavy with an excited buzz when I arrive at the race each year. There is usually talk about who might be in the crowd. This year I heard there was a 50-year-old man with WS in our midst. Because of Sophie's family, he had apparently only recently received a diagnosis. From what I understood, they spotted him at a blues festival in July and recognized his classic physical features, which are a lot like their daughter Sophie's. Heather, Sophie's mother, talked to him and experienced his characteristic friendly demeanor. She asked him if he had heard about WS, but he listed a myriad of other medical difficulties instead. Over the next months, she ensured that information on WS was forwarded to those who helped care for him, and his diagnosis was eventually made. It was truly an amazing story. Was I finally ready to seek this man out and chat with him? Heck no. Still, it was a great story. The woman in her 40s who attended last year was also present, and I saw brief glimpses of her. She seemed wonderfully happy and relaxed with a friend by her side. Last year she was alone, and her face only seemed to reveal how anxious and upset she was, sparking my own anxiety about what the future might hold for Erik. I met up with my new and old friends. The grandmothers did some hardcore bonding, and our children looked as if they could conquer the world together. As the crowd coagulated around the starting line, I felt the strange sense of peace and calmness that seems to come automatically with being around other WS families seep into my bones. I'm truly thankful for this day, on which WS isn't remotely close to being the end of my world--or even a big deal in any way. In fact, for one day, everything feels absolutely normal. I don't compare my child to anyone else. I don't need to worry about strangers speculating what may be wrong with Erik and/or my parenting skills. In fact, I don't need to think much about WS at all. I stood there smiling, anesthetized with happiness and looking like a complete crazy woman wearing my pink, fuzz and tinsel-trimmed crown made for a human being half my size to celebrate Sophie's birthday and this new step in my personal journey. One more step out of darkness into the sunshine.

Oh, yeah. You'll never guess what happened next.

I detected the faint scent of stale cigarettes, which seems extremely out of place at the starting line of a 5K run/walk. It was then that I heard a deep voice next to me say hello. For the second time in one day, I turned my head to look directly into the face of a stranger who looked an awful lot like my son.

Holy crap.

Out of the 417 people who participated, I stood smack dab next to one of the two people present I was not ready to face. Someone who could give me a glimpse into Erik's future when I really wasn't ready to open my eyes. Of course. Once again, I scanned the crowd for Allen Funt and that bloody hidden camera.

As it turned out, this kind man was quite easy to chat with, although at times he was a little difficult to understand for reasons I could not determine. If I met him on the street out of context with no knowledge of WS at all, I would determine something was different about him but certainly wouldn't run away screaming in horror. Running was not an option this time, anyway, although I would be lying if I said my flight or fight response didn't kick in briefly and spurt a goodly sum of adrenaline directly into my bloodstream. I ignored my sudden, desperate need for a portable defibrillator, smiled calmly, and introduced myself like a good girl, shaking his hand and ignoring my personal hangups about the strange feel and appearance of the seemingly prematurely aged hands of those with WS. It was at that moment that the race began relatively quietly without the sharp crack of a starting pistol, a feature I appreciate about an event to benefit those who often have sensitive hearing, and we were absorbed into the crowd. I never saw him again. I took my first confident steps forward on the trail having officially just talked to my first adult with WS and searched for the rest of my group.

Kathy took off running in her tiara along with Ed, Martin, and their friends. I walked beside my parents and pushed Erik in his stroller. My father pushed my grandmother along in a wheelchair. Erik kept glancing over at her and asking her if she wanted to race. At one point after my father and I began to humor Erik and run behind the stroller and wheelchair, a wheel of each vehicle ground together briefly, making a horrific noise and jostling each passenger, and I couldn't help but mention the chariot race from Ben Hur, making myself giggle. As the trail doubled back twice, my mother and I let out joyfully obnoxious cheers for the runners and walkers we recognized. I was able to socialize the entire way with people who stopped to chat on their way by and spotted yet more of my close friends from home who made the trip. Before we knew it, we completed the course. Brian had sustained an unfortunate injury earlier in the week after a softball collided with his kneecap pitching, so he was unable to run as he had planned but joined us to walk across the finish line for photos.

We met for pizza and beer after the race and easily filled up a party room at the restaurant. I was able to meet yet another family who had a daughter with WS. Having one thing in common with someone doesn't remotely guarantee you will begin to like them, but I have yet to meet another WS family I don't think the world of. Their daughter, a gorgeous little thing with blond locks who took an instant liking to Erik, stole my heart instantly. At the party's conclusion we had counted six children, including Erik, and two adults with WS. It felt a little like a family reunion, and I found myself gasping aloud in amazement each time I spotted a strangely familiar face on a child I had yet to meet. I marveled at the new connections and the old friendships I had made, and, at the risk of sounding horribly schmaltzy, I felt that bizarre spark of belonging I have never felt anywhere else in my lifetime. I noticed that despite our meeting that day, some of us exchanged hugs and little pats as if we had known each other for a thousand years. Although I was sad that one of my favorite families in the state will miss the convention this summer to deliver a brand new baby, I was delighted to find out that my new friends will be attending. In addition, some of them happen to be almost as freaked out about it as I am, which makes it that much more bearable. One of the mothers I just met who attended the race for the first year looked at me and told me that she was having a good time. In fact, she said, "This isn't as hard as I thought it would be." This was the first time I felt tears threaten to spill. We talked about how far we have all come emotionally in a matter of months. I realized what an accomplishment overcoming our struggles has been and actually felt a little proud for the first time. We sang happy birthday to Sophie, and the children consumed cupcakes adorned with bright pink frosting. In the end, time ran out to talk to and meet everyone, and, as usual, I found myself wanting more when we left.

Wanting more. That's a very good thing, indeed.

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Sunday, April 27, 2008

I'm Home


Being a first grader attending a school hundreds of miles away from the closest ocean shore. Taking a trip to the beach to collect seashells to prepare for your moment of glory at show and tell when you returned home. Walking along the glossy, packed strip of sand and marveling at hundreds of colorful, glistening seashells nestled in ocean foam just hours after a turbulent storm. Plucking them from the sand and placing them carefully in a basket. Knowing that this moment alone on the beach was a rare gift, just as these natural works of art were, but knowing you would have to choose only a small handful of them to share with others during a short period of time.

How would you select the ones to share? How would you feel about this heavy basket full of treasures, knowing most of them would go unseen by others?

This is how I feel about my memories of Sophie's Run this weekend. This year was very special, and I am excited to share my memories of the event but realize that even my normally endless supply of words I use to describe my experiences will not do them justice. I came back happy and full of energy. I will sort through them all and bring out the most colorful ones to share with you but will hold the others close and draw from their strength and beauty to keep me going through the year.

For those of you who were kind enough to share the day with me, thank you very much. I feel stronger than ever. It was truly a celebration this year. And for those of you I just met this weekend, I'm honored to know you and am looking forward to spending more time with you.

Thank you.

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Thursday, April 24, 2008

Make It Stop

CLOUD: Erik threw a series of rage-infused tantrums lasting a record-breaking two and one-half hours last night. He tried to break my things, flapped his hands in the air, hit us, and pushed his food off the table.

SILVER LINING: My boy is consistent and has stamina!

In fact, his behavior was so volatile that we put him in his room to avoid a volley of tiny but stinging bitch slaps and to calm him down. When it was time for Erik to go to bed a short time later, we quickly formulated a plan. I called it our own version of "shock and awe." Brian took one door to his room, and I took the other. We burst through each door at the same time, singing ridiculous songs, blowing bubbles, and providing more entertainment than Barnum and Bailey ever dreamed possible. Erik looked very confused, which cracked me up, but we had him in bed wearing pajamas with his teeth brushed before he knew what had happened. He was asleep shortly thereafter, so I am assuming exhaustion played a large role in his behavior.

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Wednesday, April 23, 2008

Comfort Food

Diet French Toast Bites
(2 servings)

2 slices whole wheat bread
1/4 c Egg Beaters or other liquid egg substitute
3 Tbsp low-fat milk
1/4 tsp vanilla extract
1 pinch cinnamon or nutmeg
1 pinch salt (optional)

Cut each slice of bread into 4 squares. I leave the crust on, but you can remove it you want.

In a large shallow bowl, mix together the egg substitute, milk, vanilla, cinnamon, and, if you want, the salt.

Prepare a large skillet on a heat just above medium with no-fat cooking spray.

Add all the bread pieces to the "egg" mixture bowl and gently scoot them around with your fingers -- flipping each piece so both sides are drenched and all the mixture is absorbed.

Start cooking the bread pieces in the skillet a batch (as many pieces as you can fit in the skillet) at a time. Brown each slice for about 3 or 4 minutes. Give the skillet another thin spray of cooking oil between each batch.

Serve and enjoy!

(2 Weight Watchers points. I usually add another point with light maple syrup and a handful of mixed berries.)

Still at a loss for words, for the most part. I apologize to my friends and family members who are beginning to suspect I fell off the face of the earth. I'm doing okay. Seriously!

Next week is my second special needs mothers' support group meeting. We plan to throw our own potluck party using the facilities at the senior center. These girls really know how take advantage of what is available in town!

Sophie's Run is coming up, too, this weekend. I will be sure to provide photos of the event. Erik is excited about seeing Sophie and singing "Happy Birthday" to her.

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Monday, April 21, 2008

A Song to Lift Your Spirits (Best at Full Volume)

This is my life
It's not what it was before
All these feelings I've shared
And these are my dreams
That I'd never lived before
Somebody shake me
Cause I, I must be sleeping

"So Far Away" (Staind)

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Saturday, April 19, 2008


My boy is special
because of the strange x-ray vision he has
that allows him to delight in the faces of angels
on the people around us
when I can only see hardness and cruelty,
no matter how hard I try.

I am blind, but he can see.

My boy is special
because he clings tightly to me like an extension of my body
to the sound of planes rumbling and heavy above us in the sky,
making me feel as if I am twelve feet tall and made of steel.

My boy is special
because his voice cuts through the garbage made of
politics, pain, hate, and sadness,
leaving nothing behind but fresh, surprised smiles.

My boy is special
because his innocence is permanent,
forever altering the way he interprets his surroundings
in a foreign world I will never fully understand
but catch glimpses of through the starbursts in his eyes.

My boy is special
because he will need to be twice as strong as I ever was
to make it in this world.

Even in the midst of thousands of angels.

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Wednesday, April 16, 2008

Seven Random Things About Me

With all that is going on in my life and my strange lack of words to really describe it all (well, I can think of two words, the first of which is cluster), I needed a little distraction, which was kindly provided by my e-friends Aspen and Autumn at Along the Journey and how did i end up here? I smiled a lot today. I am tired, but I am generally satisfied with the week. I focused on appreciating the little things today, like the way the sunshine came in the front window and warmed the kitchen floor. It felt like spring.

As requested, here is my list of SEVEN RANDOM THINGS.

1. When I straighten the house, I put things away in multiples of ten. If I become distracted and lose count, I am compelled to start over. If I don't feel like putting away another ten things, I allow myself to stop, but only after an additional five items. Obsessive-compulsive or a few fries short of a Happy Meal? You be the judge.

2. When I see something really, really gross, squirming or motionless, I have the horrifying, involuntary reaction that consists of immediately imagining it in my mouth. On my tongue. Behind my teeth. I have no earthly idea why, but I have done this since I was a little girl. I recently asked a friend if this was normal and got hysterical laughter in response. So, as it turns out, I guess it isn't.

3. Sometimes in a quiet setting, like during a financial planning meeting, a funeral, or an IEP, I think of the most inappropriate, usually horribly offensive word or phrase imaginable that could possibly be spoken in such a situation. Something so vile that I would immediately insist on being arrested for merely uttering it. I then amuse myself by fighting the almost irresistible urge to scream the chosen word or phrase out loud. I have come so very close...

4. I went skinny dipping once, and I would definitely do it again, even at this advanced age without any beer in me whatsoever.

5. My sense of humor is sometimes so dark and dry that it gets me into hot water or isolates me from others when that was never my intention. This is especially troublesome if I am nervous or completely freaked out. If you don't believe me, check my employee file at my former place of employment or my medical record at the women's center. If you want to be entertained, I'm the one to get stuck in a bank vault containing a limited supply of air with.

6. As you likely know by now, my junk food Achilles heel is Taco Bell. I'm not certain why, as all of the items on their menu are a combination of the same five ingredients and taste virtually identical. They just make perfect little grill marks on some of them once in a while and call them "new." Brian and I take great pride in hearing the crackling voice announcing the grand total of our food order through the drive-through speaker. Anything over $8 for two people is a badge of honor. I think the most we spent on our own dinner was approximately $13, and that was all in Value Menu items with no beverages included. There were no survivors. I mean, leftovers. Sadly, since I joined Weight Watchers, I have learned to eat like a girl again. Don't fret, though. I still impress the men in my life occasionally by making a complete glutton out of myself. In fact, I did it just the other day when I ate a hamburger bigger than my head.

7. I wear a bite guard at night because I would grind my teeth to nubs if I didn't. I have always had jaw issues and was required to wear an "appliance" in my mouth consisting of two metal shock absorber-like bars and four screws for seven months in high school. The little bars would sometimes jam when I yawned or laughed with my mouth open too widely, making me look like a freshly caught bass thrashing inside a boat. On these occasions, I found myself frantically cramming my pencil or a finger in there to jar things loose again. My orthodontist actually used a Phillips screwdriver on me. The good news is that it worked. I can't gross my mother out by popping my jaw anymore and haven't been able to for years.

Oh, yes. Consider yourself tagged if you want to play along!

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Saturday, April 12, 2008

Tantrum #1578

Random Thought of the Day: Movies I will never watch again include Forrest Gump and Happy Feet. My heart remains much too raw.

The sun is shining, and it is almost hot outside. It is hard to believe we had an inch of snow on the ground less than a week ago. Erik spent quite some time outside today with both of us. As I sat under one of Brian's baseball caps behind a pair of dark sunglasses to shield me from the sun, I almost finished another book. If it were not for the threat of my fair flesh spontaneously combusting, I would have finished it. Erik's neck is already beginning to pick up a hint of a suntan. He didn't get that gene from me.

Erik had the worst tantrum yet last night. It lasted almost an hour. Of course, we were completely alone in the house. It included nonstop crying. Rivers of snot snaking down his face. Trying to topple my bar stools over. Slamming his door over and over, screaming, "No door!" Refusing anything he loves. Pushing me. Hitting me. Being completely inconsolable. This all stemmed from me telling him he could not have a bath until he had eaten dinner. He was fourteen kinds of pissed off. It became so completely ugly that I began to lose my temper. I felt myself slip. I had to shut myself in my own room to regain my composure. Finally, I stripped him of his clothes and placed him in a warm bath, wondering if perhaps he was coming down with something. I went around the corner and sat down on the couch, listening to his sniffles subside and his charming babbling begin. He talked about how nice the water felt and began speaking loud enough for me to hear, starting up a friendly conversation. While I felt like a heel for giving into his demands, I felt the only other option was me completely losing my temper and saying or doing something very inappropriate. I put a tray of french fries in the toaster oven, which we enjoyed after his soak in the tub. Finally, I crawled into bed with him to read a couple of books and cuddle, which delighted him to no end. I held him and told him that I loved him. He thanked me as if he had been happy all afternoon and asked me to give the glow-in-the-dark planets suspended from his ceiling by fishing line a tap so they would swing above his bed when I turned off the light.

I tapped each planet, rocking the entire solar system, blew him a kiss, turned off his light, and shut the door.


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Friday, April 11, 2008


I desperately want to write, but words fail me yet again.

I was blind to the way his strong hands began to tremble as he reached for things. Deaf to the way he insisted his words were beginning to run at the edges as they came off his tongue. I shrugged and insisted that he sounded the same as ever to me. I watched him start suffering from excruciating muscle pain and ignored the grimaces he tried to hide, as I knew they would pass within a matter of moments if I were patient and politely pretended not to notice. Over the past few months, I trivialized the strange, ominous cough that crept into his core and began a daily assault on the the natural rise and fall of his chest.

I just ignored it all. I simply refused to acknowledge the strange, dark shadow in his presence for months. Some friend I am.

However, ignorance is a luxury I no longer possess now that I know its name. It has made itself officially known after a cruel, rude introduction, and the people who speak for it have made a grim promise that it will erase my friend from my world, perhaps within a matter of months, as there is no known cure. The same people sent him back out into the world alone with this shadow trailing behind him and told him to live as he did before. He isn't even 40 years old. I can't imagine watching him die slowly in front of my eyes. My brain throbs. My heart is split in two yet again.

No. No. No.

I wish to God I didn't see it. That I had never heard it. I want to hide my face behind my hands and periodically peek at it from behind my fingers like a child, hoping that it will disappear.

I wish to God I didn't know its name.

But I do.

Lou Gehrig's disease.

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Tuesday, April 08, 2008

Kitchen Sink

Monday, April 07, 2008


Erik's language skills went up a notch in the last two weeks.

He looked at me yesterday as I emerged from the shower and said, "I took a shower, too!" Brian had indeed given him a shower before mine. He is trying to use pronouns more, although he mixes "he" and "she" up a little bit, and is fond of saying, "Shall we go outside?" I went in to get him up this morning, and he had his blanket over his head. He groaned, stretched, and mumbled, "Morning." He sounded like he was 47 years old, not 3. He tells me I look like his day care provider when I have my glasses on by saying, "Looks like Rochelle!" He loves words as much as I do, and we say the ones that sound funny over and over, laughing like loons. We even make up our own words. Erik's favorite thing to do, though, is to add a little whistle/hiss sound onto words he adds an "S" to. We just run through a gigantic list of words, including dog, mommy, daddy, and Gracie, and make them pleural, pronouncing them as if we don't have front teeth. We giggle after each and every one. His favorite commercial on the radio is for Quality Heating and Cooling. He freezes in his tracks when it comes on, and he tries to say, "Quality Heating! Your comfort specialist!" Then he repeats the word "specialist" over and over, smiling like a crazy man.

That's my boy.

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Friday, April 04, 2008

Yummy Sounds

You just made a yummy sound, so I thought you liked the dessert.

-- Gene Wilder as Frederick Frankenstein (Young Frankenstein)

Yesterday went so well I thought I was on some sort of hidden camera show. I felt as if Ashton Kutcher and his gang would emerge from behind my living room furniture, point, and laugh maniacally. I looked over my shoulder all day.

Erik was a complete angel until he got tired around dinnertime. He watched me work out in the morning, and afterwards I kissed him on the forehead and thanked him for being so patient. I tuned the television to Sesame Street (I time my workouts around Elmo) and took a long, hot shower. After Erik's show, I loaded up my iPod, put on my sunglasses, and invited Erik to join me outside, where the temperature was actually above the 20-degree mark for once. He ran around my chair on the front walk while I dried my hair in the sun. I let him do his thing, for the most part, which mostly involves piloting his stroller around our property, tipping the stroller over to spin the wheels, and righting it again. He did straddle his tricycle from time to time and pushed himself around Fred Flintstone style with his feet. I finally asked him to put his feet on the pedals, something we have been working on, and he did. I straightened his shoes out on the pedals and told him to push with his legs. Slowly but surely, he propelled himself forward and then backwards for two revolutions of the pedals. He seems so clumsy, but his feet obeyed him for a brief moment this way. I clapped, cheered, and jumped up and down like a dreadful Dallas Cowboy Cheerleader reject, thankful we live far enough apart from our neighbors that they need binoculars to see the details of what transpires here. If they are using binoculars and are offended by any of the goings on here, I figure that would be their own darned fault.

When it was time to go inside, Erik did. No fit. No fuss. No physical or verbal abuse. I fixed him an early lunch, and he consumed it with vigor. He even made the disturbing yummy sounds I love so much. My partner called me and asked me to pick up work from the medical clinic, and I suggested to Erik that we take an extra trip to the store on the way to buy ingredients for Rice Krispie treats. He came to the garage door when I asked him to, saving my aging back from having to carry him like usual, and we drove out into the sunshine.

We hit the store first, where Erik charmed everyone and informed shoppers that we were on an adventure. When we arrived next at the clinic, a very handsome young thing stood sentry at the door wearing a Bluetooth headset. He turned to me and explained the fire alarm would be sounding in approximately ten seconds but that it was just a drill. My face fell like a bad souffle, and I turned Erik around almost violently. We exited the building as if we had been told that the reception desk was actually engulfed in flames. As we jogged out, I quickly thanked the man and explained my son has sensitive hearing. He followed me outside, introduced himself, and made small talk as the screeching sound began inside. When it ceased, I thanked him again and Erik said goodbye. Looking back on the way I reacted, I had to laugh. I'm sure to a complete stranger I must look like complete freak show! To think I actually used to care.

In the afternoon I prepared myself to attend my new support group. When Brian arrived home, he was a little surprised I decided to go. I drove to the hospital and found a vacant parking spot in front of the building, which was a complete miracle. The sun was setting, and the building cast an ominous shadow over me as I walked to enter the ridiculous revolving door that makes me feel like a hamster. I admit I spent five extra minutes in the bathroom in the hallway before ascending the stairs in the lobby to the cafeteria. I fussed with my hair. I put on lipstick. I tried to send a text message but was required to walk back outside past the emergency room to get reception to send it off.

When I reached the cafeteria, I saw the friend who had invited me to attend. She was holding a red tray holding a gigantic salad topped with sunflower seeds and those tiny corn cobs on it. I grabbed a coffee mug and filled it with decaf. I watched her pay for her salad, and we walked around the corner into the dining room, where two round tables were pushed together and some women sat around them in one corner. One of the women was in the middle of telling her very intense story about her son being diagnosed with a progressive genetic disorder a mere two weeks ago. I quietly sat down in an empty chair and joined the group. They paused for a moment to check me out before she continued. Another mother joined us and gently parked a wheelchair containing her 7-year-old daughter next to me. The little girl was dressed from head to toe in a cheerful shade of pink but appeared sullen and tired. She slumped to one side, and her mother inserted a pacifier in her mouth. Her sister quietly played on the other side of their mother at the table.

We all had a chance to tell our stories. The reasons we sat around the table varied. Cerebral palsy. Hurler syndrome. Phelan-McDermid. I fidgeted in my chair, and when it was my turn, I reopened the wound of the day of our diagnosis. Instead of pity, I received clucks of sympathy and nods of total understanding. My numbness of late kept me fully anesthetized throughout it all. I passed a photo of Erik around the table. I told the story of him wrapping his hands around my neck yesterday and trying to squeeze. To my surprise, everyone laughed. Including me. I tell a good story, apparently, and another mother explained her daughter was a complete angel unless they were alone, when she was also assaulted. Another mother reported that her arm was sore from comforting her constantly sobbing, low sensory daughter by gently but firmly striking her child's back with her forearm for an entire hour during the night until she stopped crying and fell asleep, lulled by the strange sensation other children would likely find disturbing. When she pulled her own sleeve up after telling the story, there was a small, red bruise there. We all gasped, and she turned red with embarrassment as we began to laugh again. These women are sleep-deprived saints. Warriors. The best mothers ever.

At several times during the meeting, one woman stopped to ask if I had been on any sitcoms and told me mid giggle that she had not laughed much over the past week. I was halfway horrified, as I am aware I have a tendency to make jokes constantly when I'm nervous, unable to control the impulses in my brain. I sheepishly apologized for my dark sense of humor, and she said there was no need. Her daughter is being fitted with a feeding tube in the next couple of weeks, and I could see a hint of fear in her eyes.

When the meeting was over, three of the women asked if I had to go home right away. Surprised, I told them no, and they asked me what I liked to do. After we all fantasized about going our separate ways home to the comfort of our beds and the company of the books we were reading, we all headed for the nearest Starbucks, where we made ourselves comfortable until we were kicked out at closing time. I bought a doll-sized bottle of Italian sparkling water.

When we parted ways, I felt great. Every single word from my mouth was understood at some level by someone there. Because of Erik's diagnosis, I can't afford to be shy anymore and felt more confident than I ever would be in a room with strangers. I learned about money waiting for us in the community to fund special classes through parks and recreation and how these funds were in danger of getting used for other things because parents like us are unaware of them and simply don't know to show up. How there are people and services itching for us to ask for help. How networking can change a community. How I can attempt to comfort someone who is grieving. How maybe I am good for something after all.

Most importantly, I know I no longer have to sit at home isolated from the world on days I am sad and can't find the strength to immerse myself in groups of typical parents and their children because being at home is simply easier on my heart and brain.

How I can seek out these mothers' company and just BE.

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Thursday, April 03, 2008

System Failure Imminent

I have been out of sorts over the last few days, for some reason. I suppose I am still feeling overwhelmed with details concerning the WS convention, my excitement about the upcoming WS run, and witnessing my friend process the fact he has a serious illness that will likely eventually take his life in the too near future. I have been completely going through the motions here at home and can see I am not letting myself feel much of anything at all. Even sitting here tapping at my keyboard doesn't seem to be shaking anything loose. I feel numb and weirdly calm. Something doesn't feel quite right.

I was invited to attend a new support group for mothers recently. I missed the first one a couple months ago because I developed a migraine just before I was supposed to leave the house and ended up twisting in pain under a blanket on the couch. I haven't had a migraine since. Tonight the meeting is being held in the hospital cafeteria. The bad news: No wine. The good news: Sundae bar. I'm not excited about seeing how this will affect me, especially in a clinical setting that reminds me of my occupation and the hellish days I spent there with a baby who cried nonstop. A despondent woman recently hurled herself over a railing there, tumbled through the air, and landed on the lobby floor not far from a glossy grand piano in front of a handful of horrified onlookers. She passed away a short time later. It's comforting to know that I'm not the only one who finds the hospital depressing. Erik's therapist keeps mentioning this group to me and actually sort of pushing it, but I can't figure out if it is really a good idea or not. I have "normal" and "special" balanced quite nicely in my life, and I'm a little wary about adding too much "special" stuff to the mix (that probably makes no sense at all). I do adore one of the women who originally invited me. Her daughter was in Erik's early intervention class and has Phelan-McDermid syndrome. I'm still unable to talk about even small details about Erik comfortably in a social setting, and I am hoping these women can teach me how to do that. I have learned that many people ask me which preschool attends, and telling them the name reveals the fact that he is in special education. Not telling them the name (Oh, he's in a little community preschool) either generates more interest in the name or makes me sound as if I am hiding something. Argh. Will this ever feel natural to me? I know what and how much/little to reveal depending on the listener, I suppose, but my technique simply sucks.

My parents took Erik to the pool yesterday afternoon for therapy. The temperature of the water was too high, so they asked them to wait for 10 minutes. My mother took Erik on a sprint around the block while they cooled the pool down. Therapy apparently went well, and Ella, one of Erik's friends from hippotherapy, was there as well. She has Rett syndrome and is largely unable to speak. Her body is very stiff, and she rocks back and forth on her legs to ambulate. She does this quite well. Erik usually marches right up to Ella when we are at the stables, unafraid and unburdened by any knowledge of her disability, and stares right up into her eyes. She usually looks down at him, blinks her eyes, and rocks back and forth as he smiles and says, "Hi, Ella!" Lately when he has done this, the corner of her mouth turns up as if she is trying to smile at him. It always makes my day, as she played hard to get at first and seemed largely unimpressed with Erik's efforts at charming her. Yesterday Erik easily recognized her voice from behind a door and was excited she was there. My mother said that she was in the pool when they left, and she actually might have attempted a wave at Erik. Hearing this caused my emotions to seep out a bit before they went into hibernation once again.

Erik kicked me, shoved me in the throat, pinched me, slapped me, and growled at me yesterday when he got home and we were alone again. We have really worked to teach him that these things are not acceptable, and, for the most part, he is improving. However, when he is exhausted, it just doesn't seem like he has any filter on his emotions whatsoever. He can't seem to stop himself and even lists the consequences before he acts. I'm not sure how in the world we will deal with this when we travel to California. It's hard to watch, and I have no better solution than telling him he needs to calm down and carrying him to his room until he does so. I am consistent but feel worn down after being hated like this and then having to repeat this process nine times in a row. It sometimes seems we don't get anywhere for hours. There are days during which I feel like I am trying to get somewhere quickly in very deep sand. It is, however, getting a little better. I just hope it does before he learns to destroy my things, which he is at least thinking about doing these days, or gets strong enough to really injure me. I was happy to see a class on behavior problems offered at the convention.

On days like these (hell, weeks like these), I remember those words Anne McGarrah's mother wrote at the bottom of the card she sent to me after her daughter passed away from complications of WS. They were written in red capital letters and have given me strength day after day.


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Tuesday, April 01, 2008

I Love 1988

Would you excuse me? I cut my foot before and my shoe is filling up with blood.

-- Mira Sorvino as Romy (Romy and Michele's High School Reunion)

I registered to attend my 20th high school reunion, which will be taking place in July. It is difficult for me to believe it has been two decades since I walked out of that building for the last time. I was asked to fill out a questionnaire about my favorite high school memories and what I would tell the girl I used to be 20 years ago if that was possible. I wanted to say that I would inform that shy, stressed-out girl that high school was utterly ridiculous and to not worry, as it would pass, but I refrained. I wrote instead that I would tell myself that high school isn't close to being the real world. As for my memories, I don't really have favorites. I just remember bits and pieces like a very strange dream. In fact, it's one of the fuzziest times in my personal history, for some reason. It wasn't a bad time in my life. I just don't stop to remember much of it.

I do remember how my rhinestone-studded Levi jacket used to reek of gasoline from a boyfriend's leaking Ford Mustang, which apparently doubled as a Molotov cocktail. When I didn't smell of gasoline, my pores used to emit the scent of pepperoni pizza from my job at a local restaurant. I remember marching down the streets of Philadelphia on the Fourth of July during a band trip and becoming so overheated under layers of heavy polyester uniform that I began hearing my name bouncing off the surfaces of the skyscrapers (we were proud because nobody ended up losing consciousness that year). I remember standing in front of the glossy wall of the Veterans' Memorial in Washington, DC next to our class clown and watching him suddenly dissolve into tears, overcome with emotion. I remember having to crawl in a miniskirt through tobacco-tainted spit as a freshman to get to my locker below one belonging to a couple very cute seniors. I remember when I was kicked out of the school building on senior skip day by one of my teachers when he saw me in the hall and I told him I would rather attend class. I remember draping strips of toilet paper over friends' houses and sticking hundreds of plastic forks in their lawns protected by the darkness of night and foiling an attempt to attack my own home with girlfriends, ending up on a completely crazy car chase across town over a sheet of black ice. I remember the first time a friend of mine was crushed to death in a horrible car accident. I remember going to a high school full of wealthy, United Colors of Benetton-clad robots but successfully finding a group of incredible friends to endure the whole strange experience with, some of whom I still see on a regular basis.

It was fun, and I suppose it helped make me who I am now, but I wouldn't do it again. In fact, I haven't thought much about high school since I left, and it seems strange to do it now. Really strange. I guess I jumped through the hoops I was expected to and achieved the appropriate goals with little effort whatsoever. If I did do it all over again, I would apply myself, have more confidence in who I was, and pay attention to what I wanted, not what other people thought I should be/do. I finally have that one figured out.

I plan on going to my best friend's house with gummy bears, jelly beans, and candy corns, watching Romy and Michele's High School Reunion, and having at least a couple of strong cocktails before we go back to 1988 this summer.

What a trip!

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