Save That Date!

I am planning my first WSA Northwest Region event here in town on Saturday, October 24, 2009. I have a room reserved at a local restaurant for a casual dinner and fun. You can e-mail me for details or keep your eyes peeled for a mailer.

I have also started the process of planning an annual fundraiser here for Erik's future and to give to the WSA. So far, it's either a golf tournament or a 5K. With the help of my fabulous friends and their connections, it will be difficult to decide which path to take, but I'm excited about the possibilities!

Hope to see many of you in October.

The Agony of D'Feet

My friend previously asked me to do the ALS walk, and I quickly agreed. Because his disease is not public knowledge, I keep his name from my posts. At his suggestion, I named our team something random and ended up choosing something based on a private joke between the two of us.

We arrived at the park where it began, and Gloria Estafan music bubbled loudly from two speakers held by metal stands. We checked in and were provided shirts. I went behind a bush and peeled off the shirt I wore, replacing it with my new one. We then walked to a quiet spot by the river within earshot of the festivities and began one of our usual conversations peppered with horribly dark humor other people would likely find offensive and tried to relax. When it was time to take team photos, we remained steeped in our anonymous, private spot and continued to talk until the walk began. When my friend spotted bobbing, colorful helium balloons, he jokingly complained he didn't receive a "f*cking balloon." I quickly offered to approach a volunteer and ask for just that. And right f*cking now. He laughed at the overly sweet tone I used to express such profanity.

The Walk to D'Feet ALS is not a race. There are no numbers to pin to your T-shirt or striated, muscular legs bouncing nervously about at the beginning of the thing ready to lead the way. This is because ALS takes your ability to ambulate on your own completely from you. If you can walk at all, you are ahead of the game. There were just barely enough people to classify us all as a crowd. The T-shirt I wore said, "Walk to Defeat ALS. Because you can." An ominous string of brand new, empty wheelchairs on display lined the starting area. I tried not to look at them. I made the assumption that most of the people walking were friends or family of those who had passed away from ALS. Many wore stickers that stated they were walking in memory of someone. I only saw a few men in motorized wheelchairs, and they zipped by us with gusto. It was obviously a struggle for one man to speak. Another man sagged forward in his seat, surrounded by loved ones smiling and laughing. My friend noted that he did not see many people with oxygen tanks and ventilators to indicate they have the type that he himself has been stricken with (bulbar onset). I nodded and then glumly noted I saw nobody at all fitting that description.

Not a good sign.

It was strange attending another fundraiser for anything other than WS. Apparently, George W. Bush recently approved a patient registry for those with ALS, which is a step in the right direction. I know what it's like to grapple with something that has no cure, but I do not know what it is like to eventually forfeit the last of your hope and die from it. Amazingly, my friend still has hope most days, despite his slowly progressive symptoms. If anyone can beat this thing, he can. After all, he is the most bullheaded, stubborn bloke I know. He tells me constantly that he is a "gamer." Because of this, it is still really difficult for me to see anything but his strength. He also hides his pain from me. I am largely blind to his physical difficulties, so when they are visible to me, I am positively shocked. As the weeks go by, however, I find myself less and less shocked by the frequent trips to the hospital and the breathing treatments.

We began the walk, and it became clearly apparent I had consumed way too much caffeine. I was very edgy and felt like shooting someone. I was soon able to relax and began to enjoy the sights along the river. We passed beautiful girls clad in Lycra exercising and families lounging at metal tables enjoying juicy hamburgers at a local restaurant. We provided a running commentary of it all, as we usually do. We caught the scent of food sizzling on grills and seafood smoking and groaned obscenely. He apologized for needing to stop halfway at a park shelter to rest. He seemed to be in thinly-veiled agony, fighting one leg that didn't want to cooperate, but he continued anyway, limping to various degrees along the trail. Despite this, we were not last. One more team finished behind us, and we found this perfectly acceptable.

We finished the walk, quietly exited the park, and began our search for food, which my friend now has trouble enjoying because of swallowing and resultant lung infection issues, for which he is on IV antibiotics now. He devoured a respectable amount of food, anyway. To my amusement, the bartender was politely warned that although I definitely looked the least frightening of the two of us, I was horribly dangerous without food in front of me. He laughed at this and hurried to get our plates, which came to us hot enough to raise blisters on our fingertips. We dined on shrimp, chicken, and crab in front of a football game playing out on the screen above us. I savored the way my glass of chilled pinot gris perspired in my palm.

And I tried not to think about next year's walk.

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.

Flip Flops and Lemon Drops

I'm not sure what the deal is lately, but I sagged back into a pretty severe emotional slump. It's strange feeling this way when the weather is so incredibly gorgeous. I will give myself some time to see if this cycle passes before I panic or run to the doctor for happy pills. I'm sleeping, exercising, and eating well, so there is not much else I can do. Looking at the last couple of weeks, I suppose the end of the school year and the major transition we are making are catching up with me. I feel slightly lost. We have no home visits or school for a few weeks, and I actually miss them. Our private physical therapy continues. This week we hit the pool. I believe Erik and I are bored, plain and simple. I find myself isolated here at home these days. Brian is working on his truck in anticipation of buying a little travel trailer, and I hope we can take the comforts of home with us and escape at the same time with our friends.

I am happy to report I have lost nine pounds with the help of Weight Watchers. Sadly, this puts me back to my baseline, before-baby weight, where I should have been this entire time. I have approximately 13 more to go from here and am confident I will be there soon, as I have never really put much effort into actual weight loss. The key is learning to eat like a girl again.

The 22Q13 (Phelan-McDermid syndrome) fundraiser last weekend was a fabulous affair. I found a pair of black capris at Macy's, but the blouse I had in mind never materialized, so I retrieved a little number I had yet to wear in my closet, gritted my teeth, and bared more skin than I usually do. I finished the ensemble with the black platform flip-flops I purchased in Hawaii. I picked my mother up, who looked equally smashing, and we drove to a gorgeous lodge atop the hills for the event. The "Welcome to Holland" poem and some photos of my friend's daughter were posted just inside the door. Seeing this triggered some unexpected emotion in me, and I was relieved to see my mom's eyes were watering and threatening to spill just like mine. Whew. We shook it off and were immediately welcomed by my friend, who gave us the rundown on the layout there, and I felt instantly comfortable. We ventured into a room containing tables of silent auction items, from free hair removal sessions to extravagant gift baskets wrapped in layers of glossy cellophane. I bid on a two-night stay in a cabin in the woods south of town and a dark bottle of cabernet sauvignon.

We spotted baskets of brightly colored flip-flops overflowing onto the dark floor as we made our way further into the lodge, and we were encouraged to select a pair to take home. Tables showcasing the culinary talents of five different local restaurants greeted us, including glossy pastries, fresh fruit, and tightly rolled sushi. Once we dished up, we were very efficiently provided martini glasses containing cloudy, chilled lemon drop cocktails. We headed out to the patio to join milling schools of women relaxing there. We found seats at a metal bistro table in front of a polite trio of young men playing jazz. Tucked discretely in the back corner of the patio were women enjoying pedicures and massages. Bartenders from the local martini bar poured what seemed to be a constant stream of lemon drop cocktails into glasses with sugar dust clinging to the rims.

It was a delightful way to spend a sunny afternoon, even though the two of us never seemed to really forget the reason we were there. The people I have met through our son are wonderful, and I am so very thankful I can call them friends. It was a nice opportunity to share this particular experience with my mother. My friend's little girl has attended Erik's special education class, and Erik is especially fond of stealing her little metal walker. Amazingly, this little girl is only one of approximately 300 people in the entire world with this particular genetic deletion. I had the honor of meeting my friend's sister-in-law, who sat down at our table, and her mother-in-law, who told us she was gearing up to run her very first marathon, the Portland Marathon, in her granddaughter's honor. From heartache comes amazing strength from everyone, including grandmothers. Watching my mother connect with this particular grandmother was wonderful, and it reminded me how difficult our journey has been on my entire extended family and friends. They need support, too. Amazingly, there is a nephew in this family with Williams syndrome as well. He lives in New Zealand and is reportedly doing well, living on his own and attending a technical school there. The updates on his life have provided me a great deal of hope.

We each selected a pair of flip-flops on our way out the door and said our goodbyes. I hugged my friend and made sure her daughter would be attending summer session with Erik. She will be there. After that, we may go different directions, but I am truly thankful for the special connection we will always have.

As we drove home, we both agreed we would attend this event next year.

I better start looking for that blouse.

Grand Total

This year's Valentine's Day fundraiser and donations made in Erik's name from the wonderful awareness generated by Sophie's Run came to a grand total of $1320. One hundred percent of this money was donated to the Williams Syndrome Association and will help fund research and provide better resources for our children with WS.

Thanks so much for support and generosity. For those of you who were not aware of the fundraiser and would like to donate, please e-mail me (see my profile), and I'll tell you how and hook you up with a bright red and black TEAM ERIK bracelet. If you donated and did not receive a bracelet, or you are a WS parent (no donation necessary), let me know and I'll send one your way.

Thanks again for your amazing support.