Good Company

Yesterday Sophie and her mother Heather came to visit. Some of their family and friends are staying in a vacation rental not far from here for the holiday weekend, enjoying the skiing and hiking this area has to offer. Sophie is the very first person we met with Williams syndrome back in April just after we received our diagnosis. There is a 5K race put on by Heather's best friend every year in Corvallis, the proceeds of which go towards a fund to ensure she has the finances she may need for her care as an adult. Not only does this event provide security for Sophie and her family, it also promotes awareness of WS and other syndromes in the community. Like me, Heather reported there is only one other adult in their community with WS, and she has yet to meet her. The nearest WS picnics and gatherings all seem to be in the Seattle area in the summer. Therefore, it is indeed a very special day when we get to spend time with another family who knows exactly what we are going through and has a child that is similar to ours. We have only met one other child with WS, and she was at the race with Sophie this year. It has been almost eight months since we have seen a child like our son.

Sophie is between 4 and 5 years of age now and looks so tall to me with long, coltish legs. They arrived as Brian was outside taking down the last of our Christmas lights. As they all greeted each other, I peeked through the lace curtains to watch Sophie walk. To my great surprise, she did extremely well with the steps up to the porch, although it was obvious she was being much more careful than a typical child would. When I asked Heather about how Sophie does with stairs in general, she said that they tried everything to make her look down in the past, including tape and lights on the edge of stairs. To this day, she still does not look down at her feet when she is on stairs. Because looking down is likely extremely scary and confusing, she has learned to feel the contour of each step with her foot before stepping down. Heather was equally impressed with how much Erik was talking. Sophie was dressed in spotted PJs after their group played in the snow earlier in the day. Although this was her first visit, she entered our home as if she had been here thousands of times. She thoroughly checked out each room and then quietly made herself at home with Erik's toys. Erik was in heaven. Not only was another child in his room, but she was quiet, polite, and independent. I think he even wanted a little more of her attention. He kept saying "SOAF-EE" over and over while making sure he gave Heather the appropriate amount of attention and affection and smiling to himself. Heather and I spent over an hour talking to each other and letting the kids play.

Sophie doesn't seem to share a striking amount of physical traits with Erik, but Heather and I can definitely see Williams in our own children. When I asked about the classic Williams voice, Heather said that Erik definitely has it (a little hoarse and nasal-sounding). When I looked closely at Sophie, I can see Erik has some of the same features after all. I can see it in their little noses, their puffy lips, the contours of their faces, and the outlines of their chins. However, Erik seems to have the large, classic WS hands when Sophie does not. One of Erik's hands is curling into a ball now, Bob Dole style, and his therapist voiced her concern over this. However, I paid attention to Brian's hands all weekend and noted that he often does the same thing when he is cold. I am hoping that is the end of the story.

Because we didn't have child care immediately available last night, I sent Brian off to a New Year's Eve-Eve party alone. I was a little disappointed when Brian, Heather, and Sophie all left us alone, but after having so many people in our home over the holidays, it was nice to have a quiet evening. I made french fries for us to snack on, but Erik simply scooped the catsup in his hand and tried to drink it, ejecting the potatoes with his tongue. I can't tell you what either of us ended up eating for dinner last night, but we snacked on leftovers until we were satisfied, and then I put Erik to bed. I spent an hour or so reading my book for book club.

I wonder what would happen if I stopped reading the material on WS and blogging. Would I feel a greater sense of "normalcy?" I doubt it. I still have two therapy sessions each week to remind me of Erik's struggles and will probably add yet a third in the spring. Heather and I talked briefly about the balance between being oversaturated in WS education and trying to live a normal life oblivious to everything. There are actually days during which I don't think about WS much at all. However, when I write, it's usually all I think about. My new plan is to take a week off of blogging here and there to give my poor, overloaded brain a rest. It may or may not provide any benefit to me emotionally, but I'll run it up the flagpole in 2007 and see what happens. I have a feeling that when it's time to stop writing, I will have nothing more to say about this subject and will move on to something entirely different, like knitting brightly colored cozies for my kitchen appliances or base jumping.

Until then, you are stuck with me. So there.