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 3, 2010

Monday, May 3

The neurologist called at 4:50 to tell me that all of last week's blood tests were normal, and he wanted to talk to me about doing a lumbar puncture. I missed his call, because I was driving and opted not to pick up. Thanks a lot, Oprah. Of course, it's impossible to get a neurologist on the phone unless he calls you, so I had no option but to leave a message with his assistant indicating that we'd love to get this done ASAP so please just tell us when and where. Who ever knew I'd wish a spinal tap upon my baby? I just want to know what we're fighting.

Today was a study in highs and lows. I got up early to get myself to the DMV and procure the disabled placard that would allow us to park in places where it's feasible to pull a wheelchair alongside your car. I updated my facebook page to indicate that I thought I'd be the first one there. When I arrived to find a line literally wrapping around the building, I didn't know whether to laugh or cry. I laughed. I had a book, my husband had taken the day off so the kids were covered. It's 2 hours of my life that I'll never get back, but I was home with a fresh pot of coffee to tackle the day's math lessons by 10:00 am. I had the unique privilege of teaching my boy about pi! That was cool.

Whenever he was able to work independently, I made calls. I can't believe myself when I make these calls. I become a complete dolt, jabbering aimlessly until the poor bastard on the other end of the line takes pity and gets things done for me. I have to say, despite the endless frustration of actually getting the human person, I've had only pleasant and helpful people to deal with at the insurance company and the doctor's office and the therapy offices and the medical supply companies and so on and so on and so on and so on.

I had agreed to both pediatrician and neurologist's offers to prescribe physical therapy, I figured whichever one got us in sooner would win. But despite having both guys in our corner, the appointment we have is for May 19th. Just like in the hospital when everyone was so happy with the results and I just stood there like an imbecile, the person on the phone from physical therapy was so pleased to have secured this appointment with the very best of the best PTs. I stammered out my acceptance, but asked: "So we're on our own until May 19?" She replied with info about parking validation and co-pays. So we're on our own until May 19th. Which I do not accept, but that's for tomorrow's phone calls to work out. He's in a rented adult sized wheelchair that does not fit through our bathroom doorway. He falls down in the bathroom when he tries to go pee by himself. But hey, we'll get to pick the color of our most excellent wheelchair on May 19. But please, please, please God if you're listening... make him better before May 19th.

We met Autumn and Liv for lunch, after narrowly escaping the world's most disturbing and random swarm of murderous bees near the costco gas pumps. End of days, I'm telling you. We survived nicely in location #2 and it was great to have a beer with my girl and her girl, and my boy.

And then our goal was to swim, it was a beautiful day and my boy is a water fish. Oh, the indescribable joy to get him in there (no small task) and see his face open up to a relentless grin as he felt the pressure of the water holding him up, and he realized that he could walk in there. We jogged lap after lap across the shallow end, we laughed and laughed and it was a beautiful day and all was right with the world.

Clara brought home an envelope full of treasures from Jimmy's class. They all made cards, and these were magnificent. They were not your ordinary crayon and construction paper nonsense, they must have worked on these for days - there were felt cut outs, accordion pop-ups, elaborate comics, and heartfelt sentiments. Our hearts nearly burst. But when it came time for bed, Jimmy finally broke down. God, I can't write this through the tears. He just sobbed. My baby boy, he is so broken. When will this end?


  1. Oh, honey. I know this is so scary for all of you; I hope, hope, hope that everything is ok sooner than soon. All I can say is I love you guys and that you guys are in my thoughts all the time.

  2. Oh Jacquie. God my heart breaks in two for you people. When will it finally end? And I am, as reported, thinking about your every second.

    I love you.

  3. jesus, how heart breaking, and wrenching, and twisting, and shattering. but i know you'll get him through this. i know you will. and he is a fighter and has an EXCELLENT attitude and disposition and will do his part.

    love you,

  4. jacquie, i think about you every day and have been praying like crazy for a full recovery. i cant always read this with dry eyes, but please accept my cyber hug! remember: hope is frail but hard to kill so keep it alive.