Saturday, January 05, 2008

Are we getting tired of reading about ALS yet?

My friend Leslie told me to write down my dreams. I’d been keeping track of them to share with my brother who is the dream expert but I got derailed. I think it was one dream in particular which kind of told me what was in store. In the dream, my cell phone goes off and I answer it and it’s a crank call and for some reason I know that the call if from god and I say to him “look, I know it’s you. Cut it out.” It’s one of those corny gag crank calls. ( I know, no one crank calls anymore – too old school. ) Well, this is one hellofa crank call, ain’t it?

By the way, I caught the typos in the last few blogs but I ain't fixin' them.

Ali sent me a site – 100 things to do before you die. People make lists and blog about their experiences. They aren’t dying, they’re just trying to make their awareness of that inevitability catapult them into DOING. Thinking of things they want and making them happen.

What I want to do before I die is see Maclen graduate from college, get married, have kids, find a career he likes, etc. Probably not happening. What I can do though is make sure that before I die, Maclen has all the kinds of stories written down that parents tell their kids and their grandkids about when the kids were little. That way when he is sad that his kids don’t have a grandma, he can read them the stories…or just read them to himself. I’m trying to assemble my thoughts so I can write to him but whenever I start…well it’s just too hard. I thought I would start by listing things I want to tell him, even if he already knows. I can expand them to stories later.

1) he didn’t really kick much. He did tai chi in utero. He liked to lay down sideways so my belly would look extra wide. Sometimes I would see his foot.
2) He wasn’t planned (oh shit, the stick is pink) but his dad and I knew we had to have him because he would be exceptional.
3) His apgar score was a remarkable 10 which is shocking considering I didn’t know I was pregnant for most of the first trimester. I would drink HUGE espressos and night times were for beer.
4) I knew him when I first laid eyes on him. He was like an old friend.
5) He had jaundice in the first few days.
6) The first night in the hospital he cried nonstop and his eyes were so wide and filled with tears and he seemed to be looking right at me imploring me to help him.
7) He had colic and would scream non-stop late afternoon to early evening every night for months. The rest of the day and night he was a complete doll.
8) He spoke at 6 months. He said “hi doggy” By one year he was singing songs and talking in complete sentences. At two he could recognize the word “open” on any store that had the sign and could spell the word “cartoon” backwards and by heart.
9) At two he stopped calling me “Mommy” and started calling me “Carla”I tried to convince him that he was the only person in the world who was in the position to call me mommy and he said (I think rather patronizingly) “ I know you’re my mommy, Carla”
10) He weaned himself at 14 months. He walked then too.
11) He once pulled up the top of another mom and tried to nurse with her.
12) He went to bed with music every night.
13) He had an imaginary friend named Rainer who would do all the bad things in our house like scribble blue crayon all over the wall.
14) He liked poems from an early age and wrote his first poem at 5. The first two lines went “trying to measure last days on earth. In inches, in miles, in Stevie Wonder.”

How will I measure last days on earth? Stevie Wonder is as good a place to start as any. I meant to write a blog about things I want to do before I die, but it all pales in comparison to hanging out with this extraordinary kid.


Anonymous said...


I read your comment about being tired of reading about ALS yet? I have ALS and cannot get tired of reading about it. I find that many have far more courage in living with ALS than our legislators and researchers do in finding better, life extending therapies or a cure. So, I am not tired of reading, but thanks for asking.

Carla Zilbersmith said...

Thanks for sharing with me. This is all new for me - still wrapping my head around it and I'm sure you're way further along. Best to you!