Thursday, February 5, 2009


Am I doing enough? I ask that question to myself on a daily basis. You see I have help with the kids now. It makes a tremendous difference in our family's lives. I am no longer completely wiped out at the end of the day and I no longer dread the next day. I cross things off my "to-do" list every day and boy is that satisfying. I make dinner almost every night for the family and I get to take a shower every day! If your a mom you'll completely understand that one. But there's a nagging feeling I've had for the last month or so. Am I doing enough?

Joe is in the second month of Dermot's Hyperbaric Oxygen treatment, that means he takes Dermot out of the house from noon to 3 p.m. everyday. It's weird, not hearing his singing or having to wonder when he's going to wake up from his nap.

Is the therapy working? Do we notice any differences? Not really. If anything, I've noticed his seizure activity has increased and he seems more out of it. I can't really explain the feeling I get when I think about Dermot except to say there's a silent panic in me. If I stop to listen it gets painful. So most times I keep my mind running. I glob on to things I can control, things that give me comfort. Chocolate chip cookies, running, friends and my other little boys(I know I can't control them). A strange mix hmm?

I have friends that try every new treatment, see multiple specialists and surf the internet looking for possibilites. I watch them I worry that I'm not like them. I don't have the energy or desire, I'm not sure what it is. But it comes down to the same question, am I doing enough?

We're still waiting for some tests to return from Mayo. We had them done in mid-December and we still do not have any results back. They were doing a microscan of Dermot's chromosones to check for deletions or abnormalities and a test for a male form of Rett's syndrome. Those results are in the back of my head all the time.

I know I love my family and ALL my boys with great intensity, I'm grateful for my friends, my husband, who does more for me than he'll ever know and my crazy life.

But am I doing enough?