Spooning

In hindsight, I should have known that Erik's cuddling last week was a giant red flag. He slept off and on all day Saturday after developing a fever of 102.5 but no other real symptoms. On Sunday he was less feverish but still not quite as delightfully Erik-y as he usually is. Brian and I took the opportunity to enjoy being able to hold him once we had his fever under control. Erik is usually much too busy for that kind of thing. By Sunday night, we felt he was well enough to briefly attend a party with folks from Brian's work. He loved every minute of it, especially when he saw there were dogs and a giant exercise ball there. He hung onto strangers and did the smile/quint face I still need to find a name for. The ladies loved him. I ended up in a comfortable corner watching plates of steaming hors d'oeuvres come out of the kitchen after taking a quick tour of the house with the hostess. I found myself chatting with a woman whom I previously met once or twice before. She became pregnant and had a baby a few months after I did. Frankly, comparing kid stories with other parents makes me uncomfortable a lot of the time. I find myself putting on a cheerful facade and hear a voice that doesn't sound like my own asking automatic questions about their kid I don't really want to hear the answers to but feel obligated to ask. It's hard to relax during this exchange. Her 17-month-old daughter weighs 27 pounds and seemed to be in constant motion. She said, "I noticed that Erik has leg braces on." I had dressed Erik in his best jeans, which cover up his braces for the most part, but they are still visible, especially when we pick him up and hold him. His pants ride up, making his legs look a lot like those of a Star Wars stormtrooper from the back (we hum the stormtrooper theme sometimes). Before I knew it, I had launched into a quick lecture about Williams. It was the first time I really did that without thinking. Unfortunately, because I haven't had much opportunity to practice what to say, I had some difficulty putting my thoughts into words, although I am almost certain she couldn't tell. She responded quite appropriately and asked questions without overreacting, blowing it off as nothing, or seeming to feel sorry for our family. Because I was trying to be brief, I sounded too blunt and probably colder than I intended. I could have said that his heel cords needed to be stretched out and left it at that, but I truly wanted someone at Brian's workplace to understand what he has been going through over the past couple of years. He is quiet about it, and only a couple of people know what he has endured. Looking back, there were some things that I wish I had worded differently. I sucked all of the emotion out of the words I chose in order to get through it. It probably sounds strange, but I would really like to sit down and think about some sort of short script to carry in my mind that I can follow until I'm more comfortable. I imagine things will go a little more smoothly next time. I do feel good about giving it the old college try and making it through it. I'm obviously ready to talk about it outside of my blog here and there with people outside our regular social circle when it is appropriate or questions are asked. It felt good to talk it with Brian on the way home, and he was very supportive.

It's hard seeing typical kids at what should be happy gatherings for us. It still REALLY bothers me, and I feel last night has thrown me into a little bit of a funk today. There are no tears to cry today, but I just feel like being alone. Most of the time I don't know I'm bothered by something WS-related until the next day, like a time release slap in the face that stings for a day or two afterwards.

Because I have been thinking about the one-year anniversary of our diagnosis coming in the next few months, I went to my file cabinet today and retrieved a copy of the e-mail I sent to most of my friends and family the day after we traveled to see the geneticist. I thought I was ready to handle it, but it ended up making me feel really lousy, so it is back in the file cabinet for now. It remains a very detailed record of the worst day of my entire life. Quite truthfully, I wasn't sure if I kept it and was searching for it out of curiosity.

Tomorrow will be brighter.