Dark Days

In the beginning (30+ Years ago), life was a continuous nightmare.  I was in denial - or still had hope - it's hard to tell the difference even now.  I thought Sam was just off to a bad start and some doctor would fix him.  Soon.  

Cynthia Stack, brilliant clinician with absolutely no compassion, put an end to that phase.  She examined him for a couple of minutes and pronounced, "Profoundly retarded, profoundly disabled and probably a dwarf," and walked out of the room. Technically, he's a midget not a dwarf.

Another doctor said, "I believe we should do everything we can for children like this until they are 3 years old.  And then, for the sake of the family, if they aren't any better, we put them in an institution."  At the time I thought, "No way."  And we didn't, but looking back I see his point.  I don't think I agree with it, but I understand what he meant.  Making the decision to keep Sam didn't feel very important at the time, it just seemed like the obvious choice.  But it was one of those Doctor Who universe-splitting moments that change the future forever.  We surrendered all hope of being "normal".  It transformed our family, it made the three of us (Charley, Ben and me) into who we are today.  I don't know if that's good or bad, it's just true.

That decision was the end of a long process of acceptance.  He wasn't going to get better.  He wasn't going to grow up.  He wasn't the little girl I thought I was carrying when I was pregnant, he was Sam.

Fast forward 30 mostly wonderful years.

30 years in which I have passionately fought for quality of life for my baby.
30 years in which I have been slowly transformed by the combination of intense joy and overwhelming sadness that being Sam's Mom involves.
30 years of sleep deprivation, worry and learning words like bilateral choroidial coloboma and ataxic cerebral palsy and central sleep apnea and cystic fibrosis-like bronchiecstasis and compensated acidosis.


Sam is the author of my world view, my faith, my politics, my personality.  When people comment on my wisdom or creativity and wonder where it comes from, I point to Sam.  Maybe these things were latent within me and Sam brought them out.  Every mother of a child with disabilities is different, every child with disabilities is different.  But the combination of Sam and me has been profound and deep. 

And now it's drawing to a close.  We're losing him.  I've always said that I hope I live longer than him because he would be so lost and helpless without me.  Now I am facing the fact that he is declining and will almost certainly die before me and I will be so lost and helpless without him.

I'm still fighting for his life, but I am coming to a new awareness of my imminent defeat.  No one knows how much longer we have together, but it's getting worse and I'm scared.