Monday, July 13, 2015

The Sound of His Voice

The mountain is voiceless and imperturbable: and it's
very loftiness and serenity sometimes makes us the more lonely
--Henry Van Dyke
For the first time in many years, Moise is not attending camp this summer. Since he was about 7 or 8 years old, he has gone to camp for children with disabilities. The camp is wonderful, run by caring staff members and filled with activities and outings. The activities are, naturally, geared toward seeing and hearing children.  I knew that, without his vision, the majority of his time at camp would be spent sitting in his wheelchair-- not watching, not participating, just being--while the other children took part in the activities.  He would be bored and boredom results in extremely negative and aggressive behavior in Moise.  Camp days are long days, with him leaving at 8am and not returning 'til 4:30pm.  In all the years of going to camp, I've never been convinced that he loves it.  Each morning when I put him on the bus I felt a twinge of regret as he seemed so resigned to his fate of every day camp.  Then, each afternoon when I picked him up, I felt the twinge again, as he came off the bus looking utterly spent and unhappy. Over the years I developed a love/hate for his summer camp.

There were many variables that factored into our decision to forego camp this season, not the least of which was the fact that I am no longer working outside the home.  When I was employed, it was simple.  I had to go to work. Moise needs constant care. Therefore Moise had to go to camp.  But my being home, coupled with some extreme behaviors last spring and a newly hired caregiver to help out a few hours a week, led to the decision to allow him to spend his summer at home.

The best thing about no camp?  We spend a lot more time together.

The worst thing about no camp?  We spend a lot more time together.

It's a strange dichotomy.  On one hand, it's life sustaining love, peace and perspective. On the other,  life sucking weariness and exhaustion.  Somewhere in the midst of it all, there's a delicate balance that I struggle, daily, to find.

Much of my summer has been spent entertaining, teaching, challenging him. Through it all, I talk to him, because, as parents, talking to our children is what we do.  I instruct him, praise him, correct him, comfort him and sometimes reprimand him.  And lately, perhaps because he and Kruz are the only ones at home with me all day,  I find myself longing for him to answer me.  I long to hear the sound of his voice.    Recently it has struck me that I don't even know what his voice sounds like.

All day long, I listen to him.  I'm conditioned, to the point of hypervigilance, to every sound he makes.  He has his own sort of octave that ranges from deep guttural moans to repetitive "uh uh uh uh uh" to high pitched squeals, but never words.  I know what every sound means.  I know, by his sounds, when he is happy, sad, angry or excited, but I don't know the sound of his voice.  I don't know his words.  I don't know what produces all of his emotions.

I know there are words in there, locked up inside of him, and so often I wonder, what would he say if he could use his voice? Would he tell me that he hated camp, that he never really wanted to go there? That he's glad he gets to stay home with me?  Would he say that Kruz drives him crazy with his constant glasses snatching, ipad stealing attention? Would he tell me that his hip hurts much more often than I will ever know?  Would he say "You know that yogurt you give me every single night with my meds? Well,  I've always hated yogurt!!" Would he say that he thinks life is bitterly unfair?  Or would he say "it's okay, Mom.  I'm tough, I can handle it and God is good."

So many times I sit and watch his face and wonder at the mix of emotions and expressions that I see there.  I wish that he could tell me what it is that brings a smile to his face at times for no apparent reason.  And when he laughs hysterically, until drool runs from his mouth and he can't catch his breath?  I want to know what's so darn funny.  I could help him so much better if he could tell me what hurts when his features twist into a grimace.  Life would be so much easier if he could articulate what's going on inside of him when his jaw tightens and his fists clench in rage.  And when the tears of sorrow start to fall?  How I wish that I could hold him as he pours out his heart...all the hurt and frustrations of his life.

There are big changes on the horizon for Moise and they make my heart ache.  Big changes are hard for anyone.  I think about when my older kids transitioned to college or new jobs.  They come home and tell me all about their new adventure, the good and the not so good.  It was so difficult to send my daughters off to college, but I always knew that I could talk to them any time I needed to.  They could tell me all the things they loved and hated about their new life.  Many times I heard "Mom, I want to come home."  So many times I just needed to know that they were okay and I would know. By the sound of their voice, I would know.  As Moise gets older and moves onto whatever comes next in the world of disabilities, how will I know that he's okay?  How will I know if he's terrified?  How will I know if he loves it or hates it?  How will I know if, God forbid, someone hurts him?  He can't say "Mom, I want to come home."

If only I knew the sound of his voice!

God is good all the time.

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