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.

Star Stuff

We've been streaming documentaries about how the universe works and physics beyond Einstein and I've been listening to Richard Feynman on Audiobooks lately.  It's fascinating stuff.  Frankly, I don't understand it at all, but it gives me lots of grist for random philosophical thoughts.

For example: I love the idea that we are made up of star matter and that the cells in our bodies are constantly renewing themselves.  I forget how fast this happens, but all the cells in our bodies are completely different from the cells we had just recently.  The man who said that mentioned how amazing it is that we stay the same even though we have no single cell in common with those we were made of a few days ago.

I've also been sorting, scanning and publishing all the slides my dad left behind.  They go back more than 60 years and there are a lot of them. I can tell you personally that MY cells have not been replicating themselves exactly for the last 60 years.  There is a big difference!  It might be a gradual evolution, but I'm definitely not the same person I was.  Looking at the photo of me beside the fossil "zebra" I found in 1965, you can easily believe that young girl shares no cell with me.

I'm clearly not the same collection of cells as this high school graduate in 1969 either.  Oddly, we have almost the same hairstyle...

You can see more of my family photos at http://www.flickr.com/photos/j4zberg if you are interested.

This idea that I move through the universe as a random, loosely connected, bunch of atoms with a bit of consciousness intrigues me.  This bunch of atoms will someday loose their cohesiveness and that flicker of consciousness will shuffle off this mortal coil and um do something else.  (Or not.)

This bunch of atoms I call me landed here and has been traveling through the illusion of time for a bit, but it is closer to the end of this interlude than the beginning.  I'm thinking a lot about that since my 60th birthday.

My parents both were very active into their 80's and I hope to follow in their footsteps.  My mom is still running things, but you can't deny she's slowing down.  So I think it is safe to say I probably have a few decades left in me.  But I'm about 75% done.

Or maybe I'm just 75% ready for the next big thing.