Sophie's Run 2009

(Erik, Brandon, and Cole. The "Three Amigos.")

We made it to Sophie's Run, the 5K for Erik's friend with WS, again this year. It has become a special tradition in our family. This was our fourth year. The first year we went, Erik's diagnosis had only been official for about a month, and I was in tears an awful lot. As time has passed, it has become a celebration with my friends and family. It almost feels like some sort of family reunion to me. Many of us have emotions just underneath the surface that threaten to spill here and there, but that sloppy state is perfectly acceptable in this setting. I find that absolutely refreshing. We still cry occasionally, but we don't have to do it alone, and we find ourselves laughing until it hurts, too. I did an awful lot of laughing this year.

We set up camp in a room at our favorite hotel. Brian was kind enough to get a room with a view of the river so that we could watch the university crew team practice. The men and women's teams silently glided by at amazing speed in their knife-like boats, blinding me with bodies covered in pasty skin that had yet to see sun this season. Unfortunately, our room only contained one generous-sized bed. As the hotel was packed full of high school kids and their band instruments, we were unable to switch rooms.

We headed downtown to a campus sports bar to meet my parents and my aunt for dinner and to watch the Portland Trailblazers play. We feasted on burgers and fries, and Erik watched the world go by through a large window behind our booth. From there, we headed to the grocery store for cold medicine. I have been ill since last Tuesday and figured I would need something to sleep if I would be sharing a bed with two other people who have a tendency to snore. Erik absolutely freaked out in the store. His behavior made it impossible for either of us to navigate the place with him, and he screamed and whined. I could hear him aisles away as I grabbed the items I needed. I ended up carrying him out to the Jeep to wait for Brian to pay for our things. By the time we arrived at our room, he was beside himself, screaming that he wanted to go home and hitting the bed with his fists. We were finally able to get him to lie down between us by shutting off the lights and climbing into bed ourselves, and he calmed down for most of the night. He awoke once mumbling about fireworks and began touching my face, identifying my nose, mouth, and ears in the dark with the hoarse, Williamsy tone he sometimes prefers to use, making me giggle against my will through my exasperation.

After a restless but surprisingly successful night's sleep, some of which I spent on the floor, we showered and dressed, expecting to load our things in the car, eat a continental breakfast, and head to the park for the event. Erik began to cough. I then heard his stomach make a sound much like a sloshing aquarium. He looked slightly confused. I ran to him, swooped him up, and sprinted to the bathroom with him just as he began vomiting. As he cried and heaved in my arms, I felt relief knowing there was a reason his behavior has been so out of control for the past few days. He looked up at me through his tears and said, "Mama, I spit orange!" See, Erik associates throwing up with oranges, as he had just eaten one the first time he remembers upchucking. "Spitting orange" is now the term he uses, no matter what he has just consumed.

I called my parents, who were camping nearby, and informed them that Erik was sick. By this time, Brian had taken over my post on the bathroom floor. We told them we would see them at the park. We would simply pick up our race packets, say hello, and go home.

How I underestimate the power of Erik Quinn.

The boy perked up at the park and immediately began a thorough inspection of the wheels and tires of the vehicles around our Jeep. He greeted people with smiles. I reconnected with my friends from other parts of the state. Sophie sang the National Anthem to the crowd of about 450 people with bold, beautiful confidence, and I stopped chatting with my friend in the parking lot to listen. We both had tears streaming down our faces and laughed at ourselves when the song was finished. Before I knew it, I was in the center of a large, talkative crowd at the starting line, and we all began to walk or run. Erik rode on various shoulders without hurling on anyone and even ran some of the course. In fact, he completed the whole dang thing.

Of course, in the words of Erik's favorite stuffed animal, Stinky Dog, he still "felt like woof," and after some time playing in the misty weather on the playground after the event, we loaded him into the car with his favorite blanket and DVD for the trip home, opting out of Sophie's birthday pizza party this year. We said our goodbyes and headed over the mountain. Erik doesn't ever really sleep in the car but seemed happy to ride, and his giggles sounded wonderful as he watched his video.

I smiled all the way home.

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.

I'm Home

Imagine...

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.

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.

Royalty

Random Thought of the Day: I saw a woman driving a sparkly pink dump truck this week. I so want one.

I ordered two boxes of glistening plastic tiaras in various colors from a party supply store for Sophie's Run this year. Some are even trimmed with pastel-colored fur. I figure people regularly run marathons in sequined dresses, so why not? Erik's Auntie Dee-Ta and I would don tiaras on any given day, anyway, (if you someone dragging a trash can to the curb wearing a bathrobe, fuzzy slippers, and a crown, it's me). However, we thought they would be fun to wear atop our heads in honor of Sophie's birthday. It feels slightly strange feeling so goofy this year, but, quite honestly, I felt it coming on at last year's 5K. I must admit that I suspect that the combination of aging and Erik's diagnosis has made me much goofier than I ever was before. I daresay I am nearing the pathologically goofy category. With everything that is going on in my life right now, I simply have no time for meanness, long lines, feeling insecure, or taking crap from people who think they know everything anymore. I just don't feel like letting the little stuff break my mending heart wide open all over again. I have worked too hard to feel this good, and life is too short.

I elect instead to spend the energy doing something else.

Anything else.

I'll be doing it wearing a jeweled headpiece, of course.

A Life Like Yours

It is time to sit down and reflect on Sophie's Run last weekend. If you haven't read about it here before, it's a race put together to benefit the future needs of a little girl named Sophie who has Williams syndrome and raise general awareness of WS. This was our second year participating. Last year we were just one month into our diagnosis, so, needless to say, this event is a very emotional one for both me and Brian.

We had more friends and family than ever with us this year and made a grand party out of most of the weekend. At one point, someone commented that we had "quite an entourage!" I especially enjoyed spending some time with our nephews, my brother-in-law, and my sister-in-law, who live out of town.

Sophie's Run is one race where you will never hear the sharp crack of a starting pistol. This means I will never have to stop and hold my screaming child with the sensitive ears. This in itself illustrates how we are treated by the people we meet there -- They understand Williams syndrome and all that goes along with it. I will always harbor a sense of guilt about expressing how alone I feel here when I am lucky to have so much support from my friends and family. However, to be in the presence of those with children like our own son is such a powerful need that our friends and family seem to understand. We are able to share knowing smiles, giggles, and tears over things that nobody else would begin to comprehend. It feels wonderful. What makes the day more special is the fact that we are surrounded by the friends and family who support us every day and have watched us struggle. In this sense, we get to have our cake and eat it, too, with support from every direction. In this case, it was Sophie's birthday cake!

I knew there would be a woman present in her 40s who has WS. I spotted her immediately as the race started. Looking back at my photos, I am never within a 30-foot radius of her. At the time, I didn't realize I was avoiding her, but that's how it seems now. To put it bluntly, I was scared out of my mind to talk to her, although I was so happy she was there. She attended the pizza party afterwards, and Brian made a point to strike up a conversation with her and try to get a feel for her life. He wanted to ask many more questions than he did, but he was afraid of adding to her apparent anxiety and making her feel like she was being interrogated. He collected what information he could in a sensitive manner and seemed to come away with more questions than he started with. Erik also met this woman as well as a new friend, Brandon, who came with his parents Tina and Marco. I was extremely happy to see them and walked with them for the majority of the course. Maddie was there from last year, and you will see her amazing smile in the slide show. She has grown!

Never in my life would I imagine we would experience the devastation and challenges that would come with having a baby. Brian and I do not have the luxury of being in denial anymore as we watch Erik grow and his differences become more apparent to the world. At the same time, I never imagined how many blessings this child would bring into our lives. In short, he is simply a delightful person I can't wait to see every morning.

One year ago I thought I would never smile again, but I do. As I felt the arms of my old and brand new friends around me and their tears mixing with my own on my cheek, I felt like my desperate prayers had been answered--in a big way.

The following is a speech read after the race that was written by Sophie's mother Heather. I was awestruck and somewhat blindsided by her words and asked her to send me a copy of what was said. She was brave enough to put into words what a lot of people don't dare say. And that is why I love her.

We thank you all for coming...and for getting to know Sophie, which naturally leads to loving her like we do. We, too, find her utterly irresistible. But we can't help but wonder when the day will come and the world won't find her so irresistible. When the world she has come to trust, with all her heart, shuns her for her differences. The horrible day when she is treated as incompetent, made to feel inadequate or God forbid someone calls her handicapped/retarded.

Please remind yourself and your children that people with disabilities are competent, deserving individuals of value. One in five Americans is a person with a disability. We're all the same and we're all different. People with disabilities deserve to lead A LIFE LIKE YOURS. They deserve access to quality medical and dental care and the opportunity to work where they wish, develop friendships, and live in the community setting of their choice.

Too often we blame individuals with disabilities for their lack of success when it is our society who dictates that many people with disabilities remain in the margins—segregated, dependent, and WITHOUT CHOICE. Let's do better by giving the people with disabilities in OUR OWN lives the tools and support they need so they too can make their own choices which will hopefully lead them to a life of purpose and value.

Of course our goal is for Sophie to live an independent adult life in which she supports herself. Yet because Sophie was born with Williams Syndrome and 75% of individuals with a disability remain unemployed we are formulating a "PLAN B" to help ensure she will have the support she may need to lead A LIFE LIKE YOURS.

So today we THANK YOU for being here and helping Sophie with her very own "plan B".

Puzzle Pieces

I'm back from Sophie's Run 2007.

Like last year, the event was an amazing experience. Because it was so incredible, my heart and mind are still processing the whole day, and I'm not quite ready to write about it yet. I simply don't have the words. What I can say is that it was a deeply emotional experience for both me and Brian, as well as many friends and family members. It is the one day in the year when pure joy and frightening reality collide in me, stirring up a sweet, dark mist of nameless emotions. As scared as I am spending a day taking an honest look into the strangely beautiful faces of WS, it is the one day we do not have to do it alone. Sophie's mother Heather informed us that they printed 300 race numbers for Sophie's Run participants -- and ended up giving each and every one of them out as the crowd swelled, setting a new record in the event's third year.

Because of Erik my heart is open to so many new emotions and feelings I didn't know existed, and that is a true gift. I am still gathering the memories of all of them all from Saturday, sorting through them all like pieces of a puzzle.

When it is completed, I will post it here.

Save the Date!

We are getting closer to our local 5K run/walk to raise awareness for Williams syndrome. This event will take place on Saturday, April 28, 2007, which also happens to be our sixth wedding anniversary!

Please e-mail me to let me know you wish to participate, and I will put you on the list to provide you with more information as it becomes available. Because it is still early, the information I have is currently limited, but I wanted to let everybody know so they can mark their calendars and do some advance planning. We should have a large group of friends and family this year, and there will be at least three children with WS participating, including Erik.

We hope you can join us. You are welcome to run, walk, or stroll the entire 5K. It's also perfectly acceptable to sit in some gorgeous surroundings and simply watch the festivities! Everybody is welcome. I had some Live Strong-style bracelets made for "Team Erik" for this occasion, and actually sold one at my hair salon for $50, which went to the WSA Valentine's Day fundraiser in Erik's name. It's a great way to raise awareness, and I will bring a box of them!

I attached a video of the race last year. This was only one month post diagnosis, but we still had a wonderful time. It was an extremely emotional day for us, and I cried many tears, but I left feeling great.