Sunday, February 27, 2011


I've written many essays in my head. There's the one about being embarrassed by Dermot throwing up in the hospital cafeteria, or the one about friends and how they've changed over the years, or the story about the man I met at the hospital with the nineteen year old son with Dermot-like disabilities or my favorite, the way I use chocolate chip cookies as therapy.

I sit in waiting rooms and write in my head, by the time I get home the details are lost or the energy has left me. I sit awake in bed staring at the ceiling knowing what I want to write, then I get out of bed, start up the computer and my words have left my head.

I've been struck by how profoundly sad I am. I am really sad. The challenges keep coming, changing. I've learned many coping mechanisms, I've found a higher power to run the show, I seek out help from support groups and therapists, I volunteer to help others. All of these things make me feel better, but to my bitter disappointment, they don't always produce the results I need. I still cry often, I am still overcome by how profoundly challenging it is to live with and love Dermot. The minute I think I'm okay, something reminds me how close I am to falling apart.

I won't. I won't fall apart, because I can't. My family needs me, and I am there for them. It's tempting to run away from my reality if only for a little while, but I can't.

Maybe when the snow melts I'll feel better, maybe when I lose five pounds I'll feel better, or I'll go on vacation and I'll feel better, or I'll get a ramp installed in my van and everything will be better. But for now, I'm sad. Sorry, no beautifully written essay tonight, just the facts.


Fawn said...

I wish I could help you somehow. I don't have as many burdens as you have, and yet I, too, often feel as though I am going to fall apart. I'm taking a serious look at what I can take off my plate because, woah, I am NOT managing right now.

I'm sending you good energy, Sue. I wish it was more!

Kate J said...

I know the feeling of living on the edge. I think I am managing, and then it surprises me how some small thing can push me off balance again! All the strategies help, make things better, but never make everything better. Then I think maybe it is enough to just climb back up on my balance beam... Maybe some respite?

Josh said...

I happened across your blog by doing a search on the Kimba. Our son has a suspected Mito condition due to an abnormal muscle biopsy. We seem to be fighting the same fight. Feel free to come over to my blog or if you are on facebook I have a support group page Parents of Complex Kids.