Sunday's musings

A number of years ago, Ralph and I rented The Diving Bell and the Butterfly, a movie based from a book that tells the story of a man disabled from an accident and trapped in his body.  He is unable to communicate and the camera angles bring you as the viewer right into his frustration and into his hellish isolation.

We couldn't finish the movie.

It was too close to our wonderings about Rachel. Since Rachel's birth, we have wondered if she feels trapped inside her body. That movie articulated what we didn't want to feel... what Rachel might be feeling.

Recently, I had a number of people ask me if I had heard the story of the young man, Martin Pistorius, who "woke up" from 12 years of being trapped in his body. Click this to read the story.  Yep, I had read the articles and interviews. When I read part of his hellish isolation included watching Barney reruns, my stomach turned.

You see, we THINK Rachel loves Barney. It seems to be one of the few video stars (is that what we call the purple dinosaur?) that catches her attention. She SEEMS to enjoy his music.

Or does she?

Caring for and raising children who are nonverbal comes with a set of unique challenges. You are forever guessing what catches their attention, what they like, what they don't like, what hurts when they are crying, and what they wish for.  My anger and frustration attempt to overwhelm the desire to understand - and sometimes I'm saying things I later regret.  And there I am, weeping over my kid because I. can't. keep. it. together.

Lately Janneke has been physically thrashing more in her bed and in her chair, swinging her legs around and throwing and banging her head back and forth.  We suspect that she is dealing with pain or an infection that we are currently treating... so perhaps the thrashing is due to pain or discomfort.

Or is she a kid who simply wants to move, tired of being constrained by her disabilities?

The last couple of times I've stepped into the room to check in with the nurse or take over from the respite worker, Rachel starts making her "moaning M" sound. I'm told she only starts this when I come into the room. She starts banging her hands, and when I come over, she pulls my head close to her. Her eyes widen and she starts hitting me and grabbing me. Is she in pain? Is something wrong?

Or is she a kid who wants to be held by her mom instead of someone else?

I wish for a translator to come and interpret; I wish for the ability to read their minds. It's in the wee hours of the morning when the tears come, sometimes in anger and sometimes in fear and sometimes in guilt... the realization that I don't fully understand my own kid. And never will.

What I believe carries us through those what ifs? is living as if Rachel and Janneke hear and understand what we say and do. We talk to them, we give time for them to respond - if at all - and we work through our anger and frustration by apologizing or talking through what we don't understand.

I also believe that my kids are understood by their Creator, one who intercedes for all of us when words fail or aren't possible. I believe that as complicated as they may seem, both Rachel and Janneke have purpose. Their purpose may not be as we think with career and identity - but their purpose may simply be to motivate the rest of us to care and be more caring.

So, we tentatively continue with Barney and Sesame Street episodes, watching the girls for any sign of displeasure. We try to find ways to bring variety to their day and work with their school teams to learn what makes them smile or squeal with joy at school. We try to provide the kind of care they need and, if they can someday verbalize back to us, the kind of care that they wanted.

We also have to learn to forgive ourselves, that we won't be perfect parents, and we will "lose our schmidt" from time to time. We can't waste the time we have right now; gotta do what our kids are challenging us to do -care and be caring. Learn to forgive and try again. Speak the truth with grace, and learn to laugh. A lot.  Especially at our huge fluffy dog who likes to eat surgical gloves. True story.