Wednesday, August 4, 2010

"Pick That Baby Right Up Off The Ground!"

For Pegi

Everyone has their own story about when their own personal realization of having a child with special needs finally sinks in. The realization that those charts in books and the pediatrician's office are reserved for other children, not yours. The realization that comes after moving through those different stages of human emotion at the deep end of the universe and the euphoria afterward from knowing instinctively that maybe (just maybe) everything's going to turn out just fine.

For some parents, it's one single moment in the course a child's lifetime. For other parents, like me, it's a perpetual event orbiting around and around. It's that moment when you realize that what your child needs most in this life more than money and therapy and adaptive equipment is what most children need - tender loving care.  The challenge for many of us is being in the frame of mind tha allows this love to flow freely without the usual distractions and interruptions. The barriers. The frustrations. The anger. The jealousy. The martyrdom. The hero-worship. The failure. The blame.

Just last week, I found myself thinking about medical litigation again because a very young doctor who was giving Elisabeth her eye exam explained to me that "cortical visual impairment" which is written all over Elisabeth's birth records is a "code" for oxygen deprivation at birth.

Medical litigation? Am I crazy? I'ts been over  16 years! I thought I was through wrestling with that demon.  I was angry. Very angry.

Driving home, gripping the steering wheel, I found myself (once again) searching very far, far into reaches of the dark universe where that  enigma of a pea-sized cyst, dilated ventricles, loosely wrapped optical nerves, and palor-macula suddenly took precedence over my precious cargo of children currently occupying my spaceship mini-van.  The dark universe where the words "agenesis of the corpus callosum" suddenly has nothing to do with my 16 year-old daughter's medical condition, her severe delay in development, or the need for piles (upon piles) of paperwork required for her free and appropriate public school education.

Then this old song "Comes A Time" plays on the radio. WNKU. It's a song I never payed much attention to until I realized the author was possibly drawing  from his own family experiences bringing a child with special needs into the world.  He's been there, done that, or so he's singing about it.   It's a simple melody filling up the radio waves going out to anyone trapped, lost, or broken beckoning a very special message about hope and seeing that light at the end of tunnel:

"Pick that Baby Right Up Off The Ground!"

It really is a wonder that tall trees ain't layin' down!

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