I attempted to chicken out of the WS convention scheduled for this summer. My dear sister-in-law and her family just received news they will be unable to attend in July, and I called my husband immediately, suggesting we fly instead to Key Largo (I saw it on television and immediately wanted to dip my toes in the sea there). No dice. He said he thinks the convention is important, and I had to agree. I just wish I wasn't so scared. Yeah, I said it. I'm completely freaked out by the whole thing.
The packet we received to sign up for the convention is completely overwhelming in itself. It actually has a table of contents, for Pete's sake. There are a billion classes we need to sign up for now, and we need to determine our child care needs during the convention NOW. However, as I flip through the guide, I spot many topics that interest me, including those regarding dental and vision issues, future employment, teaching those with WS how to read, special needs trusts, cardiovascular and anesthesia concerns, transition to kindergarten, psychotropic medications, and GI issues.
I suppose that it's looking into the future that terrifies me. I have been surviving beautifully by taking this thing one day at a time, not glancing up much to see what's ahead unless absolutely required to do so. It's just too scary right now. I can barely look at an adult with WS. I only met one last year and can barely look at the videos of them.
A few days ago, someone questioned me about the severity of Erik's WS. This actually happens regularly, as most people are quite impressed with Erik's abilities. They queried, "Erik's Williams is mild, right?"
The truth is, we don't know. From what I know, my kid's brain is likely smaller than most brains. The convulsions are likely shaped differently than most brains. If jacked-up brain structure and function can be mild, sure, maybe it's mild. Erik is healthy. However, the truth is, there is no way to make this diagnosis feel "mild" to me. Williams is an absolutely horrifying thing for a first-time parent to discover in their baby. I felt as if our family was almost contaminated by something dirty for the first year. However, we learned to live with it and tried to move on, enjoying our child immensely, trying to take in all of the "normal" that we can. I am determined to enjoy everything most mothers do, because, damn it, I feel as if I earned it by now. I'm sick to death of being separated from other children by panes of glass. Give me birthday cake and friends and playgrounds and toys! Now! Don't we deserve those things? At the same time, all of these things are extremely difficult or impossible for our son to enjoy. There is a lot about Erik's syndrome that isn't mild at all. It is disabling on a daily basis, and I try to smooth out the bumps as much as possible. There is always something that throws a wrench into Erik's ability to enjoy life at a simple, "normal" level.
Well, everything except birthday cake.
Am I ready to attend a convention surrounded by people with WS? Especially adults who seem so dramatically different? Hell to the no! I nearly break out in a rash thinking about it. Looking into these faces means I'm quite possibly looking into Erik's future. That, my friends, is the hardest thing I have EVER had to do. Why? Doing this means facing the thing I have to admit I hate with a purple passion. The thing I silently complain that I didn't sign up for and am only barely handling mentally most days. Worst of all, it means admitting there is a part of me that doesn't want my kid to look like "they" do. Act like "they" do. Be like "they" are.
It means I must admit that I am that shallow.
It means that to succeed, I must admit that "they" are part of the special family my son belongs to and somehow muster enough courage to accept these people and this diagnosis as part of my life once and for all -- despite my own pathetic limitations and fears. This will likely be the biggest reality check of my life. There will officially be no more room for the luxury of denial after this convention. I will be required to let go of what remains of my old expectations that formed the glorious day I found out I was carrying my son inside of my body.
Because some things were not meant to be. That's reality. And Erik will always be my Erik the Magnificent, WS and all. It's easy to love Erik, and that comforts me.
I have to go.
I once burst through the front doors of a building to take greedy gulps of night air into my lungs when a social situation became unbearable. Shortly before this, I quietly backed out of the group of people I was surrounded by and made a quiet exit. I have always required time alone, and my fight or flight kicks in beautifully when I am overwhelmed. I can see myself doing the same thing again in a less dramatic way during the convention. When I arrive in California, I will be sure to locate a dark corner in the hotel restaurant or bar where I can enjoy a 7&7 in front of Fox News and a copy of USA Today, away from all classes and any meaningful brain activity whatsoever. I think too much as it is. I also plan on finding the gym right away and hope I will have enough strength to spend at least part of each morning there, sweating out any moisture that might threaten to spill out my tear ducts later.
As long as I have a little corner to myself, I'll be fine.