The bad day
The nightmare we feared has come to reality. For evey lottery winner there's someone one with the same random luck but on the other end of the spectrum. I can feel the flesh of my cheeks and arms hanging off my bones. My arms feel so week, but I can't stop pacing around. How do you deal with this?
I was 34 when Zman was born, but that might not be old enough to not see him fade away. We don't know the extent of his muscular dystrophy, but the best case is a life expectancy of 40, but could be around 20.
I'm trying to figure out how to sell this to him & how to sell it to myself. I guess we all have a limited time here, his is just more limited than most. I think that the slow decay is what will be the hardest. The is a horible day, but there will be more that will be worse and more that will be worse than those.
He's just so competitive, always wants to be first. How is he going to cope with being wheelchair bound at 12? How are we to cope with him being kept alive with a respirator?
Lee had to get out of the house and Lina wouldn't stop crying. I could barely handle it. I thank God she's here to keep us going, although she'll have grow up with seeing her big brother fade away.
Now all we are left with is this is the "mild" case. Lee said she had the feeling that everything is going to be OK. Well she was right about him being sick, maybe she can be right about that. I'll take whatever hope I can get my hands on.
I was 34 when Zman was born, but that might not be old enough to not see him fade away. We don't know the extent of his muscular dystrophy, but the best case is a life expectancy of 40, but could be around 20.
I'm trying to figure out how to sell this to him & how to sell it to myself. I guess we all have a limited time here, his is just more limited than most. I think that the slow decay is what will be the hardest. The is a horible day, but there will be more that will be worse and more that will be worse than those.
He's just so competitive, always wants to be first. How is he going to cope with being wheelchair bound at 12? How are we to cope with him being kept alive with a respirator?
Lee had to get out of the house and Lina wouldn't stop crying. I could barely handle it. I thank God she's here to keep us going, although she'll have grow up with seeing her big brother fade away.
Now all we are left with is this is the "mild" case. Lee said she had the feeling that everything is going to be OK. Well she was right about him being sick, maybe she can be right about that. I'll take whatever hope I can get my hands on.