Erik Quinn: The Heart of a Family: Sophie's Run 2006

Wednesday, June 21, 2006

Sophie's Run 2006

Some very important events occurred before this blog was "born," and they didn't get included in my ramblings but should have. One of the most important events of the year was Sophie's Run, a 5K walk/run in Corvallis, Oregon on April 29, 2006. Sophie is an adorable 4-year-old girl who happens to have Williams syndrome. This was the race's second year. Heather is Sophie's wonderful, energy-infused mom. Heather's friend Amy originally put the race together as a way to help secure Sophie's future, as the future needs of our small kids with WS in the future are largely unknown at this point. Although this is a great reason in itself to have this event, I think it has and will morph into something even more gigantic than that for families like ours as time goes on. They are raising awareness of Williams syndrome, something most people have not heard of, and bringing families who feel alone together for something fun. Since there are roughly 1 in 20,000 kids born with WS, we tend to be scattered all over the country by this statistic. I have new friends from the states of New Mexico, Indiana, New York, and New Hampshire, just to name a few. I felt quite isolated at first but now have a network of support across the United States. The Williams Syndrome Association holds a convention every two years to bring all of us together periodically. Brian and I are not nearly ready to attend this year's convention in Viriginia but will consider it next time. Since our kids have so many similar physical characteristics and our own concerns and emotions run along such a similar plane as the other families, it is hard not to feel like a giant family. I met Heather on the internet through the Williams Syndrome Association message board when I was trying to find Williams families in Oregon. I felt like I was on another planet, as there was nobody in town with a small child like mine. Heather graciously invited us to attend the race. Brian and I happened to be at a crucial point in our grieving at that time, and I wasn't sure if we would participate; but we both ended up open to the idea. We got a motel night before in Corvallis. Brian found a wonderful room overlooking the Willamette River for our stay. Our fifth wedding anniversary was on the 28th, and we made this trip part of our celebration, complete with favorite binky, plastic wine glasses, and champagne. The Holiday Inn in Corvallis has a fresh-baked cookie bar before bedtime, which was a definite plus for all three of us. Erik had never spent the night in a motel, and we had not slept in the same room with him since we brought him home from the hospital. However, we slept quite well after we all got used to the idea. The next day we got into our comfy gear (Erik brought his Oregon State sweats) and headed for the park. What really made the day special were the family members and friends that made the trip to join us for the race. My mother, father, grandmother, aunt, and uncle were there from my family. My very dear friend Shaena was also in attendance with her husband Andy, their infant daughter Samantha, and even Andy's mother, Judy. We couldn't believe Andy and Shaena made the trip with their tiny baby, a situation most of us would avoid at all costs, and even participated in the race itself with us! Over 230 people came to participate. When we arrived, our race packets had been taken care of for us and we had a parking space waiting. Talk about feeling like VIPs! A wave of emotion hit us as we got out of the car and felt the energy in the park. For the first time, I felt like we were not alone. Words fail me here. I finally had the opportunity to meet kids with Williams for the very first time, which was wonderful and a little scary for me. I am still not ready to meet older kids and adults with Williams but was willing to try meeting the little ones. Sophie and Maddie from Portland were both there to greet us, and their families were wonderful. We swapped war stories, laughed, and cried. Once the race began, I was lovingly stroller-jacked by Erik's very proud grandparents, and I bragged to everybody around me how FAST my kid is (my parents are in excellent shape). Andy, Brian, Shaena, Samantha, and I stuck together for most of the journey. Even very hungry baby Samantha was patient with the length of time it takes four gabbing adults to complete a 5K race at a snail's pace. At the finish line, there was a small ceremony to hand out prizes, announce times, and get the kids together in one place. Since it was Sophie's birthday, we all sang to her. The most incredible thing then happened. When I stooped down to the kids' level, Maddie's arms suddenly encircled my neck, and she gave me the sweetest hug I have ever received. I am not a very religious woman, but I try to keep myself open to spiritual experiences; and this probably qualifies for number one on the charts for me. I can't do it justice with words, but I will try. At that moment, everything fell completely silent. All of the happy commotion around me seemed to cease, the world around me blurred, and I could hear nothing but my quickening heartbeat. I first thought I was passing out! I soon realized something special was happening. This child's soft, dark hair was warm from the sun in my face and her little arms tight around me, and it was a wonderful surprise. I felt a sense of peace envelop me in the midst of these three very loving, eerily angelic kids who think nothing of hugging a stranger, as it is completely natural to them and they lack the usual preprogrammed fear of others. I felt the presence of something more pure than I have ever had the honor of knowing before. What seemed like seconds was probably only a millisecond. After I recovered from that little moment and the ceremony was over, all three of our families drove to Papa's Pizza for Sophie's birthday celebration and fellowship. Erik shoved a chocolate frosted cupcake down his gullet in seconds flat and enjoyed the party immensely. When it was all over and we were going our separate ways, I realized that even though I shed more than a few tears throughout the day, there were people around me who didn't think any less of me for it, put their arms around me anyway, and made something that could have been dominated by undertones of despair and grief into something so incredibly fun. Who knew? Heather e-mailed me this morning, and my memory was jogged to the point that I had to write about it today. Thanks to the families who welcomed us with open arms, and thank you to my friends and family who came to support us. Next year will be even easier to enjoy. I know there were many more of you with us in spirit, and I hope you can join us next year. Two words: Beer and pizza! Oh yeah -- We didn't come in last. We beat the little girl on the tricycle.


Blogger PASLAY'S FROM IDAHO said...





1:26 PM  
Anonymous Anonymous said...

What a day that was for us all! Life had become so strange when at the diagnosis day we heard doors slam behind us and our world as we knew it (or thought we did) disappeared. The step through the door that we didn’t choose but was chosen for us opened to a cavernous place where nothing was familiar, where we knew no one, and where we had new rules to follow, but no idea what those rules were.
The trip to Corvallis and Sophie’s Run was scary, no doubt. Your dad and I talked about how we might feel at the end of that day, knowing that it could be a damaging experience.
My first visual when I think of Sophie’s Run is always the beautiful green leaves against the bright blue sky. The Willamette Valley does spring as no where else. (On the high desert, where we live, you know spring has arrived when the bags of steer manure hit the parking lot at BiMart!) And it just got better. All I had to say to Amy, the race organizer, was “I’m Jean Frye, Erik’s grandma,” and instantly I knew—really KNEW-- someone in this strange new world we had entered. It was great to have someone say, "How old is Erik? He’s BIG!" And when he sat at the end of the day, spinning his beloved stroller wheels, Maddie and Sophie joined him. Being with people who are living in our new world and who have begun to understand the rules was awesome. And the best thing of all—they’re truly amazing people.
We all had a few tears, but they were warm tears. I still savor every moment of that sunny day in Corvallis when I felt we began to be a part of our strange new world. I felt pride in belonging to such an outstanding group of people. And of course, proud of our perfect grandson!
Love, Mom

7:19 AM  

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