beginning the backstory…

Standard

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. 

Advertisements

3 responses

  1. That’s funny, I am 28 years old and I have spina bifida and I don’t have my shit together either…but yes please do elaborate…

  2. Wow, what a coincidence! Where do you live? Tell me more about not having your shit together…

  3. It’s kinda funny the way you say it, he can’t do his bowel care, and he doesn’t have his shit together…

    I have a son who was born with hydrocephalus, and who is now 42. I haven’t blogged too much about him, except for one post when he had seizures last year. I hope you’ll write more about Blaine and what you’ve been through. I know a lot of it already, but would love to hear it in your words.