Tuesday, November 11, 2008


Mark has been doing so well. When things are going well I blog less. Things get busy, focus changes and on a good Tuesday Mark gets on the bus and goes to school.

This morning Linda got up at 5:30 and started Mark's feeding. He's tube feed so it takes a couple of hours. At first he seemed fine but by about 8 he was definitely not fine. Suddenly school was canceled and the doctor was being paged. This is not the recipe for a good Tuesday.

Mark has always had a high pain threshold. There are very few things that make Marky cry but this morning he's crying steadily. There are very few things that get me off my game, but Marky crying steadily is one of them. My focus on the bigger picture of life, my responsibilities at Sanctuary, my longer term goals, all that shuts down. I'm left clinging to the lifeboat that is Marky's room.

Some things are universal and really require very little explanation, parental compassion is probably near the top of the list.

As I write this Dr. Kevin has arrived. He has a very peaceful tone which has an immediate effect, on us anyway. He discovers a low grade ear infection. It's not so low grade to Mark. Antibiotic treatment is ordered.

In the past Mark's seizure activity always went up when he was sick. Over the past couple of days we have seen some seizure activity. It's nothing compared to last year but he has been having low level seizures. For the most part he just looks like he's staring at the wall. We know it's a seizure because we can't break the stare. It never lasts more than a minute or so.

I called the shop to say I won't be in. I'll spend the day in Marky's room. I'll use the time to do some work at home. Part of my work is very practical, but much of it is compassionate. I will use this time to focus on the compassionate.

I've been out to pick up the Amoxi. I've just administered the first dose. Mark is resting quietly. Mom has gone back to bed, she's working the evening shift today. The house is quiet except for the gentle clicking of this keyboard. Mark yawns and sighs. Peace.

No comments: