Music Therapy

I haven't been writing much from Marky's Room lately. He's been so stable and life has been busy, so no news and no time.

Recently a bunch of my music buddies came over on a Saturday morning. We dragged Mark out of bed and down to the living room. We sat him up on his bean bag and played a hodge-podge of music for him.

He was sleeping when we brought him down but as Denis began to play on the keyboard, Mark turned and looked. Before long everyone was playing together and at the end of each song Mark would give a little laugh to show his appreciation. It's beyond words what happened in that short time. I think there was a little healing for all of us.

Mark is still doing better than he had been for many months. His seizure activity is still less than it has been in a couple of years. We've only seen one or two big ones in the past month. There have been several other occasions when he appeared to have small ones. Those are more difficult to identify because they don't involve any movement our vocals. A small seizure really just looks like a blank stare.

Overall Mark seems well enough to go to school, although we're finding it a difficult decision to make. All the what ifs come to mind. He is stable but still very weak, so the idea of rolling him onto the bus seems crazy. On the other hand, we need to think about how incredibly boring his days are. By the end of September we may try to send him in on Tuesdays.

Next week Mark is going to try a new respite place. He has been going to Safehaven for several years and we love them, but due to his increasing needs we've turned to Bloorview MacMillan. It's a rehab hospital for kids. Mark has been followed by Dr. Biggar and a team of specialists from BloorviewMac for most of the past decade. They have a respite facility and it is right in the hospital. That just gives us a little more peace of mind.

Mark visited Sick Kids in March, April, May, July and August. Three of those visits were in the back of an ambulance. He has been doing well but it's only been a month, and you can see by the record, that's not long enough for us to relax. I'll close with a picture of Mark at Sick Kids. It's not easy but it's very special.