At age 11 and out of the blue, Jimmy lost his balance. His diagnosis is Acute Cerebellar Ataxia. He is currently wheelchair bound and we are working hard to find whatever it is that we need to fix. Here's where I'll try to keep everyone in the loop about what's going on.

Monday, May 10, 2010

Monday, May 10

So, today was a rough one. I've avoided updating all day because I really just wanted to be able to downplay how bad this part was once it was all over. The thing is, though, that we're now missing the easy days when Jimmy could sit in a wheelchair! It's like a bad joke. He's had a terrible headache ever since the stupid spinal tap. We keep telling ourselves it will be better in 24 hours... 48 hours... a few days.

He was doing better last night, laughing and lounging in the sun outside, drawing and talking to Grammy on the phone. He was excited for the next day's scheduled field trip and seemed to be on the mend.But this morning, the first I heard from his room was crying. He had woken up and tried to sit and test the headache. It was not good. It was very not good - he thought he would throw up. So once again, we reconfigured the day and once again, I let my coworkers know that I would not be coming in. I called the doctor, left a message as usual. I could hear the weary frustration in my voice. I sensed that we'd be going to the ER, and we just don't like it there.

As the hours passed without a return call, I knew I had to make the decision myself. It's not like I needed or expected the warm reassurance that the neurologist would (not) offer, but I also knew that unless he wanted to do a horrible sounding thing called a blood patch, there was no point in putting Jimmy through the agony of a car trip and waiting room endurance test. He felt okay when he was horizontal, no pillows today, just flat out horizontal. Yet still I spent the day plagued with indecision and haunted by sadness.

This really sucks.

Once again in the afternoon, he started to feel better. He was up in his chair for 15 minutes at a time, and the freedom and relief that we both felt was palpable. He probably overdid it, he's back down for the count and fretting about whether or not he'll be up for museum day tomorrow. We'll just have to see how it goes.

I can't complain about poor communication from the doctors, it's my onus to get him emergency care if and when I feel that he needs it. Feel free to offer your advise, but tread lightly, I'm hanging on by a thread here.

On a lighter note, Bill washed my car so beautifully for Mothers Day, and even cleaned and vacuumed the inside. So what if the battery was left on to drain all night? I've got AAA! When the nice man came to jump start 'er up this morning, I had him bring along a bucket of gas because I was woefully low. Two birds! I never left the house until it was time to go and fetch Clara and take her to karate. I pulled off down the street, alone... which is an emotional place for me right now. But Bill had made me a CD, and queued it up so that this song came on just as I left the driveway. This song was from Mary Beth's righteous end of summer mix last year, it makes me so very happy, despite the fact that tears are streaming down my cheeks. Do yourselves a favor, turn up your speakers:

Share Better Things by Dar Williams

"Better Things", from Dar Williams Out There Live

Here's wishing you the bluest sky
And hoping something better comes tomorrow
Hoping all the verses rhyme,
And the very best of choruses to
Follow all the doubt and sadness
I know that better things are on their way.

Here's hoping that the days ahead
Won't be as bitter as the ones behind you
Be an optimist instead,
And somehow happiness will find you.
Forget what happened yesterday,
I know that better things are on their way.

It's really good to see you rocking out
And having fun,
Living like you've just begun.
Accept your life and what it brings,
I hope tomorrow you find better things.
I know tomorrow you'll find better things.

Here's wishing you the bluest sky
And hoping something better comes tomorrow
Hoping all the verses rhyme,
And the very best of choruses to
Follow all the drudge and sadness
I know that better things are on the way.

I know you've got a lot of good things happening up ahead.
The past is gone, it's all been said.
So here's to what the future brings,
I know tomorrow you'll find better things.
I know tomorrow you'll find better things.


  1. I love you guys! Jimmy, you are such a remarkable young man, and know that your strength lies in your amazing family. I think about you every day, and pray that everyone is at least alright. I miss you, and send good vibes your way. Love you Kennedy's!

  2. im trying to think of what i wanted to hear from my friends when my dad was so sick or my girls were injured. was there some inspirational, catchy, witty, slurpy, mushy thing that someone could say to make me feel totally better? If there was, I wanted to say it to you. When I thnk back I just needed to know someone was there while I shouldered the pain. well, I'm here. I wish I could help you more with this nightmare, but suffice it to know youre in my prayers and thoughts. Play your music loud girlfriend, and sing, sing, sing!

  3. Aw jeez. Who ever thought the wheelchair would bring freedom and relief?

    Eager to hear how he'll be today.

    Now I'm playing me some Dar. Mary Beth put that tune on my "Female Vocalists for Ellie" birthday mix last year. Awesome. The Jimmy Anthem.

    I love you.

  4. Oh, Jacq, I'm so sorry for you & Jim. But I'm glad Dar Williams' rendition of "Better Things" helped. I think that's originally a Kinks song, actually.
    Love you, MB

  5. Oh honey. That just sucks!! SO hoping he wakes up feeling better today.

    It is a strange, strange time when getting back in the wheelchair feels like a good thing.

    Baby steps.