All of it.
These days I focus on the positive while being fully aware of WS, and perhaps that is confusing to others. Perhaps that makes Erik's disability disappear to them. Unfortunately, perhaps the hard work we have done to help Erik achieve each milestone and Erik's daily struggles also disappear in their eyes. I dread the day reality hits and they see Erik's WS for the very first time when they ask him to solve a simple math problem or tie his shoe months or years after his friends can accomplish the same tasks. They are likely in for a very rude awakening.
I have to thank them, though. It's nice to finally realize this is all in my head.
Now I can cease cramming his feet and legs into tight plastic casing on a daily basis, taking him to that ridiculous therapy of his, and having his blood vessels monitored regularly. I will sleep soundly, knowing his lifespan will be a full one without any worry whatsoever. That he will be able to live on his own without any assistance whatsoever just like any other adult. That he will be "average" and "normal."
I will begin forcing him to play with other children on equipment that seems four stories high to him, even if he is covering his ears because of the noise, crying in agony, and falling down onto his bottom because he can't see where the edge of what he is standing on is. I will now force him to fit in with every other kid. Yeah, they're right. He's completely "normal" and "average." I was simply unable to see it before. It's nice to have somebody take an occasional glance into my life and point out the obvious. Dur! Talk about mentally challenged!
To think I was feeling alienated and alone for nothing! That I screamed at the world for support and sometimes got silence in return! Now I know that a pat on the shoulder and "You're in my prayers" when I asked for help were all I needed after all! What a freaking waste of time!
It's time he toughened up and lived a completely normal life, for sure.
The following was recently posted on a message board by a father of a girl with WS. I think it provides a lot of insight into our own family.
Let's not beat around the bush: Williams syndrome *IS* a genetic *disorder*. Period. It causes lots of bad lifelong medical, physical and cognitive things. Period. It is a disability. Period. The word *disorder* means something is *wrong*. Causing lots of bad medical, physical and cognitive things means something is wrong. Having a *disability* means something is wrong.
There is no debate here. Semantics and emotion don't change the facts.
Let's be clear: We're not talking about our children's disposition, or character, or spirit, or love of life, or gentleness, or empathy, or humanity. There should also be no debate here that in these areas they are far greater humans than the rest of us who do not have Williams.
Would I give anything to stop Erin from having surgeries and lifelong medical problems, to not know an endless parade of doctors on a first name basis, to not have her be on Concerta every day of her life without her behavior being out of control, to not subject her to endless testing and retesting that is so difficult for her, to not spend tens of thousands of dollars on attorneys and countless months/years fighting school systems to get basic education, to not need to have national conventions to learn how to deal with the system in order to allow her to live a somewhat normal life, to not have to worry and plan for the fact she may never live independently, to remove the probability that she may never get married have a family or children, to not have to worry about (and plan for) who will take care of her when we're gone and the burden we may have to place on our other children, to not watch her struggle with so much in her life that is not a struggle for anyone else, to have her able to run and catch a ball, to not watch as she despairs and withdraws because no one wants to play with her or be her friend.
Would I give anything for that? You're damn right I would - in a heartbeat.
If you're reading this thinking this means we would love Erin more if she didn't have WS then you're completely missing the point. We couldn't love Erin any more than we do - she is one of the three joys in our lives (the other two being her brothers).
But this isn't about us, or you, or the world. It's about our children and their lives. It's about Erin and Erin's life. And would Erin's life be better without WS - It absolutely would. And I would challenge anyone who would suggest otherwise as being selfish and not having Erin's best interests at heart.
If this bluntness has offended anyone, well... then it has. Denying that WS is a disability (which means something is wrong) does not provide benefit to anyone, least of all our children.
The bottom line is that none of this matters. We can't take WS away, so speculating about whether we "would" or not is a pointless emotional discussion. What is important is what we do to ensure that our children with WS have the best lives and the most opportunities they possibly can. If we stay focused on that, and do it to the best of our abilities, then we have fulfilled the responsibility we have all been given.
Labels: Williams syndrome