Tuesday, April 27, 2010

high anxiety

and then all hell broke loose.

I don’t really want to write about all the medical details. I thought I would, at several points throughout the ordeal I was writing it in my head and thinking about how therapeutic it would be to process all of those intense moments. Looking through a window at my boy having a head CT. Meeting his glance as he lay strapped inside the tunnel of a massive and otherwordly MRI machine. Getting annoyed at the post-surgical kid sharing our room for having a fever at 3AM. But I can’t, not yet. It’s still too raw, and too unresolved.

I am very good in crisis mode. I kept my shit together the whole time, and although I’m now fairly desensitized to the image of my boy lurching around like a drunken sailor, I get caught off guard at unexpected times, like reading a supportive email from someone at work, trying not to do the ugly cry while finishing a great book at karate with my girl (The Art of Driving in the Rain, read it), or sitting down to try and write a blog post.

If you know us you’ve probably already been updated ad nauseum, if not feel free to email me and I’ll catch you up. Suffice it to say that my boy is okay, those creepy test assure us that there is nothing evil lurking, and all expert opinions agree that he will eventually lose this wobble. His diagnosis is Acute Cerebellar Ataxia. But it's not cute. Not even one little bit.

When will it resolve?

Yeah. I’d very much like to know.

But hey, I've got photos! And I want you to know that he insisted that I take these, with my phone. He was irked that I refused to videotape the insertion of his IV.

Our day started in the ER:
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He was mobile, thanks to those clever cavemen who invented the wheel:

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After shlepping all about the palace, we were finally deposited into a little room with a very fun bed in which one could fold oneself in two if one desired.
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One desired.


I had a little convertible chair contraption to sleep in, but my boy offered to trade places with me. Awwwwww.
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But he totally hogged the laptop.
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I thought we had the bad side of the room because we had to amble past the other boy and his other mom to get to the bathroom, but we really had the good side. The one with the escape hatch.
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To the pretty little courtyard with windows to the outside world
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Where we could yell obsenities greetings to approaching visitors
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One visitor in particular declared: "This place is awesommmme!"
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I do not concur.
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But they took good care of us, and we are grateful and so very relieved that nothing ominous appears to be looming in my baby boy's nervous system.
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We are very much looking forward to the time when this is a memory, and maybe some of the good stories will come out and we can laugh and sigh and then get back to the business of being 11. There are bikes to ride, trees to climb, boards to break, adventures to take, not to mention trust in gravity and peace of mind to regain.
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So we wait. Maybe tomorrow?

12 comments:

Me, You, or Ellie said...

Oh Jacquie. What an insane time for you all. Not only are you great in crisis mode, you're great in deconstructon mode -- great post. I love your boy's story, the photo of both kids in bed, your man and your girl approaching.

And I'm really excited for when this is all just a memory for you, so your boy can get back to school and karate, natch, but also so you'll post the video of the drunken sailor walk.

Love you.
Ellie

Pat said...

How very scary...you did great, Mom.
Pat

Pickles and Dimes said...

I'm glad everything is all right. What a scary thing! Your boy seemed in good spirits the whole time, though, and I love his story.

Best wishes to you all.

MB said...

Hope Jimmy fully recovers very, very soon. He's an excellent writer! Hang in there, Jacq.
Love you,
MB

Me, You, or Ellie said...

It's just so awful that he hated every minute of his hospital stay :-)

You both are good sports, and great in crisis mode, clearly.

But, geez, no video taping of the IV insertion? Where is your sense of adventure, woman? (So, so, so hate those things! Glad to see Jimmy took his in stride though.)

And, yes, maybe tomorrow. And if not, the next day.

beth

thinking of you in PA said...

Was that Scripp's children's hospital?? I spent many an hour there 16 years ago on the pediatric cancer floor..and the kids thought it was really cool then (before Wii).

Your boy is a real trooper...and maybe you can have him edit out the "my mom was at a party" part for his final copy :)

Let us know when he's walking straight. I'll keep you all in my prayers.

Me, You, or Ellie said...

LOL, PA - the party was well documented as "Jacquie's coming out party", so not sure I can sweep it under the rug at this point :)

It's now called Rady Children's Hospital, maybe it was Scripp's 16 years ago?

Thanks for the nice words, everyone! We're hanging in there.

Jacquie

Christina said...

Oh jeebus! Really? This happened during your coming out? Yikes!

That letter of his just further proves that he's one awesome kid (as if Lego Charlietown didn't seal it).

I know what you mean by crisis mode. I do great. But a week later? Crumble!! Hugs to you and I hope he is back to being non-wobbly very soon.

Rita said...

I'm so glad that everything is normal and you just have to wait this out. I was really scared for you! His essay was adorable, and I'm so jealous that your eleven-year-old has such a good grasp on spelling and grammar. Looks like he could just take a week OFF.

Kathi D said...

I'm hoping for this to be a funny memory one day soon. Meanwhile, I concur that the "mom was at a party" line needs to be cut. Maybe "mom was at church" or "mom was out donating at the blood bank"?

Me, You, or Ellie said...

I know; I cracked up at that "my mom was at a party" line too. When Mistah and I would visit and Jacquie and I would go out to a movie or for sushi or for a bev-er-age, we'd always tell the boy we were going to a meeting. And then his eyes glazed over. Mission accomplished.

Ellie

Mom C said...

I love this baby. Every morning I wake up and say "maybe today will be the day", we're all praying it will be soon. You and Jimmy are my heroes. I love you mom