Monday, March 24, 2008
I hope everyone had a fantastic Easter. Payton managed to make it thru possibly 5 minutes of the Easter service (they dimmed the lights and it got her a bit nervous, then someone started playing a flute and that was the end of that!). Bob took her home and Koen and I stayed - which I really enjoyed. It'd been a while since I'd been able to attend for the entire service.
This Easter I found myself really missing my grandparents. They've been gone for about seven years now and I know if they walked thru the door today it'd be like they were never gone.....we'd pick up right where we left off. I think so much of it is how I wish they were here to see my children. My grandma loved kids and I could just picture her having a ball with all the kids around. And-I picture her just going crazy over Payton.....loving her, supporting her. And-I know she would cry right with me when I'd had a tough day dealing with the different emotions we go thru raising a child with a disability. Wow, I miss them. But, I know I will see them again some day.
This past weekend the listserve was quite busy with how to actually describe WS. Some were upset because a gentleman stated it meant something was "wrong" with his child. I'm sure I've even said that before because if there wasn't anything 'wrong' with Payton why are we going to the doctor so much? Why are we having so many therapies, etc? I realize it just hurt some feelings but I wanted to post what a father said about his daughter. His words are so true. There are so many times when I blog that I'm hoping parents do not think I love Payton any less because of her having WS. It's just not the case at all - I just wish for more for her. Here is what he typed - he explained it so well.....much better than I ever could, so I thought I would post it.
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.
I'm so thankful we live in a time where all of us can communicate together - vent about the bad times and CELEBRATE in the good times! It's nice when others can put things into words that you feel, but can't explain.