Dear Parent or Guardian

You know those really organized Moms who keep track of all their kids extracurricular activities, remember when the class snack day is, know when the field trips are (and where they are going), and just generally have it goin’ on?

Yeah - I’m not one of those Moms.

I’m the Mom who forgot preschool “Wear Red Day” for four years straight - two years with each kid. Well - actually I remembered for Claire’s second year of preschool, but didn’t want to break my perfect losing record, so I sent her to school in pink instead.

I’m THAT Mom.

To wit, I have a stack of mail from the school, all addressed “To Parent or Guardian”. My thought has always been, if it were really important, it would have my name on it. For the most part, my theory has served me well. Not perfection, but I’m aiming more for middle-of-the-road anyway.

At 8 o’clock this evening, I’m sorting through my stacks of school mail, my letters from the college, my work stuff, and all Claire’s medical crap, trying to find out when the 5th grade field trip is. Claire is very much looking forward to this trip, and I am worried it’s on the same day she’s going to Ann Arbor for her angiogram.

As I’m shuffling through the detritus of at least 100 murdered trees, I find yet another “To a Parent or Guardian” letter. It was sent to me back on May 20th, and I am fairly certain that I didn’t look at this letter, because it is the one notifying me that Claire is going to be a recipient of the President’s Award for Educational Achievement.

What the... what?

Claire? My Claire? My sweet, hard-working kid who has practically killed herself simply to remain on honor roll since her surgery and despite all her strokes? That Claire? The one who dropped from an A+ to a D in Social Studies this trimester, and has worked her butt off to bring it back up to a B in the past week? That kid? But... she’s not all A’s. She barely managed to get herself back onto the A/B honor roll.

And then I read this:

“The purpose of this award is to recognize students that show outstanding educational growth, improvement, commitment or intellectual development in their academic subjects but do not meet the criteria for the President's Award for Educational Excellence. The criteria for this award is:

• Show tremendous growth but did not meet all the criteria for the President's Award for Educational Excellence.
• Demonstrate unusual commitment to learning in academics despite various obstacles.
• Maintain a school record that would have met the school's selection criteria for the President's Award for Educational Excellence but illness, personal crisis, or special needs prevented the student from maintaining such high standards despite hard work.”

Oh. Okay. Yep - that’s my kid. Holy crap! She’s getting an award! She had no idea! I had no idea! We need to get her a dress. We need to get me a dress. HOLY CRAP!

She went to bed floating on a cloud of academic achievement. I’m sitting on my bed, typing this post, floating on my own cloud of parental pride.  Except...

Can someone please tell me when the 5th grade field trip is? Because I’m still THAT Mom.

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.