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.
Thursday, February 10, 2011
A few days ago I listed that I was counting seizures in my status update on my facebook page. I got a outpouring of concern and kind words.
I wondered what would happen if I said that I was counting seizures in my status update everyday. Would the same people give me the same comments everyday? Would I get new comments from new friends each day? Would people just assume there was a bug in the system and ignore it?
I remember with glaring clarity Dermot's first seizure, it lasted for over two and a half hours and ended in a trip to a the ER and multiple drugs to stop it. My heart was racing, I was shaking uncontrollably while huddled in the corner holding his onesie in my hands while the doctors and nurses worked on him.
Now, nearly three and a half years later I watch Dermot every day. I watch a seizure rudely interrupt a beautiful smile. I watch a seizure destroy his concentration while he plays with a new toy. I watch a seizure intrude his sleep. I watch a seizure jolt his entire body as if he'd been struck by lightning. I watch a seizure remove his personality and leave a blank stare for thirty seconds while drool drips from his lower lip. Every day I watch seizures. Not once a day, not ten times. Too many times to count. I usually stop counting before dinner time. By then my energy is tapped, it's not worth counting another one. After fifty it doesn't make much difference.
My friends ask "what do the doctors say?", the doctors are grasping at straws. There's not a handbook on seizure control and every one's brain is different and every one's seizures react to medications in a different way. I don't blame the doctors anymore and I also don't expect them to know the all the answers either. When the seizures get too bad, I call the doctor, we decide together the next drug to try. I check the side effects online and make an educated guess. We're trying a new one now and weaning off an old one. I'm afraid to call the doctor because neither one of them is working.
So I'm here watching, feeling quite powerless. I just wanted you to know.