and then,

August 23, 2009 by · 2 Comments

I haven’t posted a blog in awhile, not because I haven’t written any, just because I haven’t posted the ones that I have wrote. They were a little too raw. Like I have said before, there are good times and bad times and last week was emotionally challenging both with Ben being gone and a packet arriving from the genetics lab in Little Rock. It’s not that I didn’t know the information inside the packet- it’s just like getting shocked when you go to plug something in, and it kind of hurts your feelings in a weird way, even though you know that the outlet isn’t out to get you, you’re like- “what the heck?” and that’s how I felt about the William Syndrome packet arriving in the mail.

I’m still refining a post about it, it may or may not make it’s way out here soon. Sometimes it’s just easier to stick to the surface and not go there emotionally, not to be intentionally closed off… just that it’s easier not to always be so REAL. Things are looking good, though, understand that it’s just this one thing in my life that is smearing things, I’m pretty happy on a day to day basis. My brain is exhausted right now too, which isn’t helping things. I haven’t slept good the whole time Ben was gone; from equal parts of staying up way to late and nightmares when I was attempting shut-eye. Usually I sleep BETTER when he is gone, with the bed to myself, but I am thankful he’ll be home soon. I’ll be posting more soon…

Filed Under: All about ME ·
  • Megan

    Sorry for the long post here, but:

    When did you get the diagnosis of William Syndrome for Summit, Heidi? I tried to read back a ways, but I couldn't find where you posted about when you first found out.

    I do not know exactly how you must be feeling, but I believe we are on a similar road, you and me. Especially when I first learned of Ella's epilepsy diagnosis more than two months ago and the high probability of mental retardation that went along with it. It changed me profoundly. It permeated everything else I thought about, every activity, every interaction.

    And now, more recently she's doing so well that I keep hoping some doctor-type will just call us up and say, "well, we were mistaken, carry on with your lives as before." It probably goes without saying that I'm in a bit of denial about it all.

    In actuality, we are just waiting to see how she develops and then we'll go from there. The waiting is hard, but I don't really want to rush into knowing for sure (if she'll have major disabilities) either.

    Anyway, I just wanted to say, I'm glad you're blogging about your experiences and feelings through this new reality. Summit is very blessed to have you as his mommy.

  • Heidi

    Hey! No, thanks for the long post, I love them, Thanks! I found out about Summit having WS in November last year but really wasn't able to post about it until the last couple of months. The post in November talked about my anger and frustration, but not specifically about William's Syndrome because, at first, we really didn't feel it was anyone's business, but now this is my blog so I talk about it, although I don't go around telling everyone that I meet that he had it. I don't think his KDO teachers know because they there isn't a reason to tell them, I want him to be treated normally.

    The waiting seems to be the hardest too for me, we just don't know at what level he'll be at iq wise. He could be just slightly disabled or pretty bad off. Even as bright as he seems to be it's not an indicator of intelligence- which is hard.

    I think the part that upset me about the packet the most was that certain things were mentioned that were new to me about William's Syndrome, like his raspy, low voice is really something wrong in the muscle development in the throat.

    He doesn't fit the norm for WS so sometimes I, too, want the doctor to call and say he made a mistake, so when things like this happen, it's just a reminder that as much as I may want to live in denial sometimes that reality is something I need to deal better with.

    I had heard about your daughter from Martha so I knew that you must be facing something similar but at the same time, not everyone is able to realize where they are at while in the midst of everything and I didn't want to overwhelm you. :)