So very much to think about today…

Twenty nine years ago today my sweet son was born. I’ve been thinking a lot about that day this morning. The fear, the not knowing what was happening, the not understanding what people were saying to me… then the short moment of magic looking into the eyes of my newborn son, already named after my beloved granddad. I saw all of eternity in those eyes. It was something I had never felt, or imagined feeling.

Then he was taken from me, to another hospital across town, to a neonatal intensive care unit. I’m not entirely sure I even knew NICUs existed. In many many ways, I entered a new world that day. Not just the world of motherhood. But the world of families with unforeseen children. The first time I heard the word spina bifida and myelomeningocele spoken aloud. In my heart of hearts I somehow knew this was my last chance at being a mother. Don’t tell a mother her only child might not make it. She will do anything to make it not so.

I still get to be in Blaine’s presence pretty much every day of my life. We still share a lot of ourselves with one another. What an honor for me. What a privilege. He is the sweetest soul I have ever known. The most empathetic human being I believe exists.

I have so very much to think about today…

beginning the backstory…

Okay, I guess it began 28-1/2 years ago when Blaine was born.  After an emergency cesarean because bad signs started coming on his due date, a doctor came to my bedside and told me my baby had something I’d never heard of.  I’d never heard of spina bifida, but doctors don’t usually use that word.  So she told me he had something I couldn’t even pronounce to repeat to others.  When it all got sorted out, I learned the word was myelogmeningocele.  He was probably paralyzed, had hydrocephalus, and so on and so forth.   

Well, it turned out to be true.  He was paralyzed, which meant he had no control over his bladder or bowels.  Needed to use a wheelchair to get around.  Had seizures.  Some brain issues, which sometimes affected his ability to make it in life. 

But over the years Blaine has become more and more independent.  Once we got an accessible bedroom and bathroom on the first floor of our 100-year-old house, and a 45-foot-long concrete ramp built in the front yard, Blaine could do a lot on his own.  

Two big challenges remained:  he was physically unable to assume his bowel care, and his brain interfered with his ability to organize himself and generally get his shit together. So I continued to assist him with these tasks.  

Hmm.  Realizing those words don’t do the tasks justice.  Perhaps I should elaborate.