the wheelchair

I just walked into Alex's room to check that the chair still had a charge. I am trying to get it to the wheelchair recycling place here in Madison. They will be able to give it to someone who needs it. They also have the equipment closet for the MDA here, so they will take any other stuff we had,icluding a Hoyer lift and some CoughAssist machines. So I wanted to check the charge and its still fully charged,as it was on the 12th ready for Alex. It's still barely possible for me to walk in there. I miss him so much. Fred came in with me but it still broke my heart.

CAMPING IN NEW HAMPSHIRE

CSI 1985 JENNYS NURSERY SCHOOL PICTURE WITH ALEX

2003 Blythedale Graduation

the books about grief

I've been trying to read some books about grief, and about losing children. I have begun to realise that I've probably been in a grief process since finding out that Alex had DMD. I can remember sitting in the plastic chairs at Blythedale Children's hospital with Alex and Jenny. Jenny was a half day kindergartner and so was there through the whole process. It was the beginning for her of a long education on disability and the disabled.I wondered what that bright 5 year old was thinking and absorbing. When Dr.Lowe came to where we were sitting (he was a tall older man,with an accent, maybe Swedish, with an eye patch over one eye) and told he thought it was muscle disease,I knew what that meant, having had experience with a child in another first grade class where I had taught, who had muscular dystrophy. I stood up and started helping the kids get their coats on, my throat closing, quickly trying to get us out of there. I took in what I needed to know, that Alex would need a muscle biopsy, that they wouldn't say what it was until the test results,listening while I hurried the kids out the door,holding their hands tightly. In some of the books I read then, ,they called the child's diagnosis "the death of a dream". I don't know what my dreams for an almost 4 year old boy were then. What happened that day was that I could no longer take for granted that Alex would have a a regular life and a normal life span. All our lives changed that day.

Alex and grandma in Venice,Florida

a picture of Alex

I found a newer picture of Alex today, from our first season in Florida.When we moved from NY to WI We bought a place in FL to go to in the winter.Alex and I stayed there for three winters with Fred coming on every other weekend.We hadn't counted on how lonely it could get and as Alex was not feeling as wel as heh had, how scary it could be.The picture I found he looked healthy and handsome standing next to his grandma. The pictures at the service were older and didn't look so much like he looked now. I've been looking at it all day. Its mad me sad and at the same time mad at the world. A friend called about her car getting smashed in a parking lot. What am I supposed to say? I'm sorry?

Old friend

In the late 80's we lived in Tokyo and my best friend from those days was Sue Parsons, a tall blond Brit, born the same year as me. We spent many afternoons over tea in my kitchen hashing out our lives and the lives we had living overseas. Her daughter Amy was 3 years younger than Alex and 5 years younger than Jenny, a cute feisty English girl, and she would play or watch TV with them while we chatted. I spoke to them today and it was as easy as it ever was, though Amy now works in a local Police Station (doing "admin" work, she said) and is grown. We promised to stay in better touch and we will try. She's one of those friends that are keepers.

contributions

I've been working on contributions, the ones coming into Alex's rehab hospital and school (Blythedale childrens hospital in Valhalla,NY) and the equipment of his to give away, hopefully to the local Wheelchair Recycler here in Madison, WI. It reminds me of when Alex was first diagnosed, how we had to tell and had the hear the same things over and over.Alex was almost 4 when he was diagnosed and we spent many days with DRs testing his reflexes, which in DMD are slow or non-existant. After a few days of being "hammered" Alex went home and found a toy reflex hammer in his doctors kit and spent days on end banging doors,walls,cabbage patch kids with that hammer (tho not his sister or us). Working it all out in a direct Alex fashion. I decided then that we would try to keep the DR's out of the picture as much as we could and try to give this little boy a carefree childhood.

my son alex

My 24 year old son Alex died on July 12th. He had Duchenne Muscular Dystrophy, a disease that slowly destroyed his muscles, leading to physical disability and also affected his heart and breathing muscles. I am writing this Blog to talk about Alexs life and mine as I begin living without my son.