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.

Saturday, May 22, 2010

Saturday, May 22

Busy day today, Jimmy and Bill had a very fun adventure in Laser Tag, and then Jimmy went to play at a friend's house for a while. When he got home, he and his sister enjoyed some serious wrestling on the tumbling mat. I couldn't even watch. He kept saying: "if I could stand up, I'd SO beat you." She's pretty tough, though. The dog got in on the action and one of them might end up with a black eye tomorrow, I'll let you guess which one.

Wobble Boy is very wobbly today. I keep reminding him (and myself) of our mantra: it's not going to be a straight line to recovery. It's scary and discouraging, though.

I want to say thanks for your comments, both here and via email, facebook, etc. It really means a lot to hear encouragement and good thoughts from people in so many different parts of my life. I very much want to reply to each of you individually, but I've not been able to find the time. I do want to thank you though, from the bottom of my heart, for checking in on us and for caring so much about me and Bill and Clara and our Wobble Boy.

Several people have said to me that I'm strong or that if anyone can handle this, it's me. I really do not feel strong, I feel tiny and weak and helpless. But there's a kid looking to me with his big blue eyes for reassurance and guidance and yes, even strength. So I'll handle whatever comes our way if it means that he can keep smiling and finding the pure joy in things like bodily functions and armpit hair.

On to tomorrow. Goodnight!

1 comment:

  1. You can only be strong if you "put your own oxygen mask on first." Any small thing you can do for yourself; walk, dinner out, gym, long bath, massage, will help keep you strong enough. You are right about the long unpredictable nature of recovery. You have to find the right balance because you can not sustain emergency mode for an indefinite amount of time. Hang in you have any choice in the matter.