Monday, December 21, 2009

New Moan Ya (not)

This blog has always been about sharing the gift that Mark is. I started it at a time in Mark's life when he seemed to be fading away. He was to weak to get out and it seemed like his whole world was in his room. For a period of time I wrote faithfully and often. Trying to share the wonder of Marky's life. Over time my enthusiasm with blogging began to fade. It is a little like sitting in a closet and talking to yourself. I always found it easier to write about Mark when there was real drama. For most of this year Mark was so healthy that the story became so ordinary it was boring. Last night that all changed.

Mark's health is measured in terms of his responsiveness, frequency of seizures, and his stamina/physical strength. Over the past couple of months we've notice a very subtle erosion in all of these markers. His seizure activity is creeping up, and his strength is failing. His responsiveness has remained consistent, as long as he's not being pushed to hard. Road trips are starting to be too much. I first noticed that when we went to the airport to get his big sister who had been away for seven months. We were all so excited, but poor Mark just looked like he wanted to be home in bed.

Yesterday at church, something Mark usually enjoys, he was looking very weak. We got him home to his bed and cared well for him. By evening things were getting worse. We knew we were going to have to take shifts through the night. We started a discussion which we haven't had in over a year, "do we go or do we stay?". These discussions always involve the whole family. We all decided, based on past experience, that it was better to go sooner than later. So, off we went to Sick Kids.

Mark has no language, non-verbal they call it. I think he's very verbal. He's just non-wordal. Mark has a few expressive tones which for those close to him don't require much translation. He expresses boredom, happy/content, happy/funny, funny/oh stop it your killing me, unhappy, unhappy/unwell, and feeling like a sack of sheep dung. Last night it was mostly the later. At one point it was something different, it was like happy/sheep dung. It was like he was telling us he felt awful but that he loves us and appreciates our loving care for him.

Today Mark is sleeping it off.

Mark's health is a puzzle. We can never be sure if the increase in seizures indicate underlying problems or if they precede a decline. When Mark was so sick in 08 his neurologist described his seizures as constant non-convulsive. That's just like it sounds. It's like having hundreds of tiny seizures a day. The only evidence is in his eyes. When Mark is well he speaks through his eyes, when he is not you see it in his eyes. Lately mark has being like that. His neurologist has adjust one of his meds. It will take a few weeks to see the difference.

I've also come to realize that when Mark is sick nothing else matters to me. I still have responsibilities, and I still do my best to meet them, but my passion, my focus, my creativity all seems to melt down into this time and space that I call Marky's room.

I don't want to miss a single moment of the gift that he is. I think this is true about all my relationships. Life is so precious. How much of it is wasted because we are paying attention to the wrong thing? Mark has taught me that life is so simple.

Thanks Marky buddy, you are my hero.

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