Erik Quinn: The Heart of a Family: Sophie's Run 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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Blogger Amy said...

I think in the end, this is what we all want:
"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 am so moved you found it.

8:53 AM  
Blogger Aspen said...

Sounds like Sophie's Run was once again a HUGE success! Someday I will join you on that walk. That is my promise to you. I get so terribly blue knowing that I haven't been there to enjoy such an amazing race alongside so many wonderful people.

9:41 AM  
Blogger camille said...

Nancy, this sounded like an awesome day! Gorgeous weather, beautiful people, wow!
We've never had the experience of being surrounded by multiple families who are in our same boat, but I imagine it must feel so relaxing. I'm so glad you and your family get to participate in this race! I love the tiara, by the way. Maybe you should consider making that a regular accessory :)

9:52 AM  
Blogger Julie said...

It sounds wonderful. I am so glad it was a good day.

11:03 AM  
Blogger Nicole said...

Nancy, what an amazing description of an even more amazing day. Thanks for sharing.

You and your son are gorgeous, by the way!

11:57 AM  
Blogger Tes said...

I am so choked up right now, darn you woman, people here at work think I have a bad man in my life:)Thanks for your words that make it seem like we were actually there! Thank you so very much.
lila's mommy

12:40 PM  
Blogger Penny said...

Sounds like a wonderful day. Sop glad you found it rewarding

6:08 PM  
Blogger Michelle said...

What an amazing experience!

3:38 AM  
Blogger Laura said...

Thanks for sharing, Nancy. I felt like I was there with you. Glad you had a wonderful time.
Love the picture! I might need to pick up one of those tiaras.

3:40 AM  
Blogger Katie said...

thankyou for picking me up and taking me accross the miles to share that experience with you.

6:35 AM  
Blogger Every minute counts.... said...

I am so glad that you decieded to go again. It really does bring you a sense of peace with the whole idea of WS when you are in the middle of a group of people that understand.
I like the pink crown!!!


6:50 AM  
Blogger Kerry said...

I am so psyched you had such a great day :) I can just envision Erik and his great-grandmother racing ~ how sweet.

I echo Amy; I am glad you found the peace that comes with acceptance. I wish I was there to have that pizza and beer with you :)

8:10 PM  
Blogger Michelle said...

It sounds like you had a wonderful experience!

8:24 PM  
Blogger LZ Blogger said...

You are amazing! Congratulations! ~ jb///

6:36 AM  

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