Watching Over This Boy

There is a lot of time to think at 2:30am as you watch over a boy.

He is the sweetest, most stubborn boy. He seems tough. But he is not. He is fragile. He is like a glass bull in a brick factory. Charging and going full speed.

You begin to think strange things at 2:30am.

His breathing is deep and steady. His body hard at work, knitting back together after another surgery.
How wonderfully we are created. It seems the way our bodies heal when we are injured would make it so that our bodies were made to live on and on. But we don’t. Life is fragile. Life is a gift.

This boy that’s sleeping so deeply next to me, well, he shows us a thing or two about strength and love.
Who ever thought I would find spending my vacation in a children’s museum fun at my age? Or choose to buy toys instead of getting a haircut?

I remember the struggle we had when he was placed in our home.  The shock of his medical condition, the shock of seeking help and not finding it easily.  I remember calling Parent to Parent.  There had to be answers.  The search was just beginning.  I was looking for a solution, answers to questions.  What I found out is there is not an answer or a solution.  There is only learning to live fully and how to make whatever you are dealing with into the best life you can.  He takes the lead in that.  He teaches us.

He has severe congenital scoliosis and kyphosis.  He has a G Tube because he can’t eat enough to sustain his weight due to surgeries; he is diagnosed with autism and Down syndrome and cannot communicate.   The impact of the progressive spinal curve from the scoliosis affects his lungs and we were given a prognosis of “Maybe 10 years or so of life without the aid of some newer technology”.  So many disabilities, so painful.  Yet he keeps smiling.

I watch as he smiles and plays, even in discomfort.  He accepts it almost as if he thinks that this pain must happen to all little boys.  In the middle of play, he lays down on the floor because he just can’t sit up anymore.  But he wants to keep playing.  His endurance is low and it shows as he walks away.  He walks with an uneven gait and pays the price with pain.  Yet he wants to go.  He giggles, pretends to run and jump, his feet never leaving the ground.  At the red light, he shouts “Bop” and when it turns green, a resounding “OOooo” fills the car which fades into giggles. 

Some have asked why we would do this.  When a child arrives in the natural way with disabilities, it is a responsibility and duty the parent did not ask for. 

Why we would say yes to taking on someone with something like this?  When they put this child in my arms, as much as any other mother, the strong urge to protect and care came into play.  This instinct to care for and protect is not limited to natural birth.  In response to that question I have to say “who wouldn’t?  Who among us would turn their back?” 

All I can say is whoever would turn away would be losing the greatest gift.  Learning to make whatever you are dealing with into the best life possible.  And a great deal of love and joy.

And that’s a warm feeling at 2:30am watching over a boy.