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.

Almost 15

Wow! Mark will be 15 in a couple of weeks. It seems impossible. How did that happen? I know this sounds like every parent who is in denial of their own age, but Mark really isn't 15. We recently took Mark to see a nutrition specialist. He told us that physically Mark is the size of an 8-9 year old and mentally like a 1 year old. That just doesn't add up to 15. As I sit in his room, writing this blog, he's laying in his bed making cooing noises like a baby. He's so special, unique that age just doesn't matter. Often when people ask us how old he is, I realize how confusing the evidence is. We were visiting a church recently and this kid, a real tough guy, came up and asked us how old he was. When we told him he said, "no way". Then he ran off to get his friends to come and see the kid in the wheel chair. To some people his behavior might have seemed offensive, but to me it was a reminder of how special Marky is. For half of those 15 years I was hoping that Mark would somehow catch up. Then when he almost died and I stopped hoping for for what might be and started celebrating what is.

Everyday I thank God for the blessing that my special son is in my life. I know his mother and sisters are saying dito, dito, dito.

Busy Summer

Things around Marky's room have been very different this summer. It was just a year ago when Mark was so sick that we thought we were going to lose him. The blogs then were deep and sad. These days Mark is doing much better and the blogs are much fewer and further between.

This past week Mom and Dad went on another honeymoon. It was our twenty-ninth anniversary on the 16th. Last year we walked from Sick Kids to Fran's on College. This year we jumped on the bike and went to Bancroft and then up through Algonquin Park, Huntsville, Washago and home. It was a beautiful week. It's only possible for us to get away like that because of the awesome people at Safehaven. That's the respite home where Mark stays when we are away.

Mark is going back to school and is stepping back up to three days per week. We'll be blog'n about that I'm sure, so stay tuned.

Sailing

It's early. I got up early to start Mark's feeding process because today we're going sailing. Bob Buckley is taking us out on Lake Ontario.

Mark is happy this morning, maybe it's left overs from talking to Lynn on Skype. Mostly he's just happy cuz life is love and he's got lots.

Stay tuned for a full report on our sailing journey.

Progress

Mark continues to progress toward standing. He recently got a new pair of foot braces. At school he is working towards spending time in a stander. What's next? Maybe walking. Mark seems keen. 

Yesterday he sat on his stair glide for the first time in a couple of years. 

Small increments on a long journey.

Mark is a very simple reminder that life is about where you are, not where you think you should be.

Slow down friends, slow down.

...and I Have Two Big Sisters

Marky here. Well, not really. Actually it's my Dad typing what I tell him. I say, "aahhhwaaahhh" and he trans-turpulates it.

I spent the week at Safehaven while Mom and Dad went up to Collingwood for a week of R&R. On Sunday evening they came to pick me up. When I got home there was this party. My friend Deyen was at my house with his Big Mum and his Slim Dad. When I say Big, I don't mean fat. She's big cuz she has a baby livin' in her.  And, when I say slim, I don't mean skinny, I just mean that when he stands behind my Dad I can't see him anymore. Anyways I was glad to see my buddy Deyen and he was happy to see me too. After supper we went up to my room and watched Tree House together. When Deyen watches TV he's like in a trance. I kept giving him wet willy's (goobered finger to the ear). That's what friends are for. It sure is good to be home.

Did I mention that my room looked like a base camp for an international mission trip? Well it does, and it is. My Big Sister Lynn is going to Zimbabwe in the morning. She's going for three months, to be a teacher. That's super far. I'm going to miss her, but I think she's gunna miss me more.

I still have one more Big Sister. That's right, I have two Big Sisters. My other Big Sister Erin is home from Universally. She showed me her report card. It said, "AAAAAAAA". My Dad trans-turpulated that and he says it spells AWESOME. I think she's awesome too. She loves me and I luv her too. I'm glad she'll be around for the summer.

Thanks for droppin by my room for a visit. See ya!

You're dismissed

Yesterday Mark was dismissed from the Palliative Care Team that has followed him so closely since he was so sick last summer. 

That's it, the shortest blog ever.

Oh, there will be more, because next week Mark is being fitted for new AFO's. 

Next stop, vertical. You go Marky.