May 26, 2014

Let It Go

At the doctor - Chillin' like a villain
On April 15th, we found out Claire’s neurologist suspected her pial synangiosis surgery wasn’t as effective as we’d understood it to be. Whether Claire’s father Eric, Peter, and I all misunderstood what Claire’s neurosurgeon told us in January (which seems a bit unlikely) or if we were misled - the reality is the blood flow on Claire’s right side of her brain is still severely blocked and she’s not where we thought she was.

Since Claire’s original neurosurgeon has left his Michigan practice, we met with the new neurosurgeon he’d recommended at the University of Michigan. At our consultation earlier this month, we were told it was unclear if Claire’s first surgery was working and Claire needed to undergo additional testing to clarify that issue. We also heard the news I hoped we’d never hear - Claire’s Moyamoya disease is developing on the left side of her brain and she would need additional surgery in the near future.

I admit it - when I got that news all I wanted to do was scream. Kick people. Throw things. I want to punch people who complain that their Starbucks wasn’t made right. The drama creators, the vaguebookers, the whiners, the complainers... I want to run them over with my car. Having a child in a near-constant state of medical crisis has stoked the fires of my vengeful side. I want to infect all the children whose parent’s take them for granted with something terrible so those parents know the fear and anxiety and worry I do - and then I feel awful for feeling that way. Unless you’ve dealt with a critically ill child, you can’t understand what I feel. But I can’t help it - I’m just. so. mad. I stomp around the house. I shout. I hate everyone.

Then I look into the faces of my kids and I realize, I can’t do this. I have to pull myself together and deal because if I don’t - how can they?

Today Claire asked what’s coming up this week. I told her she didn’t have any doctor’s appointments or testing this week and she was so excited. This led to a discussion about what’s coming up next week - an angiogram. For some reason, Claire is really concerned about this procedure. The upcoming brain surgery, however, she’s still not talking about.

I tried my best, in layperson’s terms, to explain what an angiogram is, and why she shouldn’t be worried about it. Quinn hung out for the description - since he likes all things science. I answered any questions she had as best I could and then we got to talking about what the upcoming brain surgery, or surgeries will mean to her. What her prognosis and life expectancy is. That she’s gotten through it before, and she will again. And someday... someday... this will all be behind her and she can be “normal”.

We had a bit of a laugh... Claire hates the drug Versed. It’s what doctors use for “twilight sleep” and while most people enjoy the buzz (Quinn was absolutely hysterical to watch on Versed when he went in for his adenoidectomy) Claire despises it. I explained to her my theory about why she hated it so much - because she’s my darling little control freak, queen of Type A tweeners. Versed makes her feel like she’s out of control and she hates it. I told her I intended to tell the doctors she doesn’t like Versed very much, but she might be given it anyway. If she is, I said she was to relax, close her eyes, embrace her inner Frozen princess, and just... Let It Go.

She laughed.

As most of these types of family talks do - it led to some discussion of what type of behavior and attitude I expected from her, and how things are going to be. Then I told her... “Claire, you have faced more challenges and adversity before age 11 than some people face their whole life, and you’ve faced it with a shrug and a smile. Which makes you pretty fantastic in my book.”

The reality is, I can think of many adults who’ve not faced half of what this child has handled with aplomb, and they act like every little bump is the most egregious thing in the universe. While I can’t speak to whether or not that makes them ridiculous or my child amazing -- all I know is she’s a thousand times the human being that I could ever be.