Erik Quinn: The Heart of a Family: Minimize

Friday, March 28, 2008

Minimize

Sometimes I get the impression that people think I am making this entire WS thing up.

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.

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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.

But...

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.

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7 Comments:

Blogger Julie said...

Oh Nancy some days I feel the same way. Don't get me wrong I love my family but they totally don't get it. My mom and dad think Noah is going to be in that 5% and be just fine. My mother n law has stated he has a "mild" case. And my sister n law whom I love dearly is clueless. She has a son 2 months younger than Noah and can't see the differences that I see so clearly. I wonder when he is driving and Noah is still trying to master a bike if she will see it then. Sorry to sound like a smart ass but you get what I mean. And that is just my family. Most of my friends don't get it and think he is just fine and I even have 2 friends who recently had children that I think I terrify. I have 2 best friends I have had for years and one of them had a baby in Nov. When I discuss Noah I think she gets paranoid that something will happen with her baby. I hate that I make someone I love so much feel bad and cause them worry. Sorry to babble but I just wanted you to know I totally get where you are coming from. Have a good weekend.

7:57 PM  
Anonymous Anonymous said...

Gua said--

Amen! When a friend who has been in on Erik's struggles (and ours) from the beginning JUST THE OTHER DAY-- AFTER TWO YEARS OF THIS- said, wide-eyed- "This is something that affects all of you EVERY DAY!" Hello!
Kudos to you wonderful mothers who gracefully deal with the enormity of WS. The downside of your grace is that sometimes the world doesn't see the struggle, and is allowed to minimize the horror you live with night and day. My candle will always be lit just for you.

Love, Mom

6:00 AM  
Blogger Katie said...

As Jai fell to the ground sobbing for the 10th time that day because the velcro on his shoe wasnt pulled tight enough for his liking, i looked to my mother with a tear in my eye and said "yep. Perfectly normal child", sometimes i think she is the only one apart from my husband that 'gets' that this wont just go away 'in time'.
love ya Nance,
xxoo

4:11 AM  
Blogger Laura said...

Oh, I've got one for you....On Thursday I was at Michaela's school and a parent of another child says to me, "She's doing so well and doesn't seem sick, you're really lucky".....LUCKY?!!....Are you freaking kidding me?! LUCKY?!.....Yes, it's by sheer luck that she can be successful at school and "look" healthy. It has nothing to do with the hours upon hours of working with her, hours of research about HOW to work with her and the many meetings with school, therapists and specialists to make sure the programs are working for her. Not to mention the multitude of hours spent in Dr.'s offices and trying to figure out how to manage the not so visible issues going on inside her little body.
But, yes, there could be worse things.....I am LUCKY that I get to see her smiling face everyday.

5:24 AM  
Blogger Rosemarie said...

Brilliant! The father’s letter pointed out the fact that having a disorder is what it is. Furthermore, giving credence that life WOULD be better less the disorder. He’s right! Who needs further explanation on that issue?

Most can't change their circumstance with disorders or diseases, but we can do and give our best while moving forward in a positive direction.

I applaud the parents of WS children for their warrior spirit!

9:46 AM  
Blogger kathi said...

I'm sorry some people are idiots. And sometimes slapping them is such a temptation, if only it weren't for all that legal crap.

10:58 AM  
Blogger Heather said...

I know.

12:20 PM  

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