51: Caring for Sophie

51: Caring for Sophie

From Chicken Soup for the Soul: Family Caregivers

Caring for Sophie

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them.

~Lance Armstrong

Last night, I looked at my daughter, dwarfed by my big bed, as she watched her favorite videotape. And I had this fleeting thought, “Sophie, why are you still pretending to have Down syndrome? I know you’re just fooling me. Come on now, snap out of it.”

Of course, the disability, while it seems to loom, is actually in the background. I can see that in the twinkle of her eye, and I see that under her confusion and sometimes funny speech she is a genius. Underneath her touch of physical awkwardness is a ballerina, a gymnast, an Olympic champion. But that doesn’t change the disability; it just changes the way I look at it.

Caring for Sofe didn’t come with a warranty that she will spring up, healed, ready for the next triathlon or doctoral thesis. But in her eyes I see everything important to me. My daughter’s care is constant. But so is her progress in caring for herself. We are lucky.

One woman who read a column I had written about my daughter’s disability said, “I am glad there is one of us represented out there.” The reader wasn’t disabled, so what was she talking about? One of us? Sounds odd, but I knew exactly what she was referring to. She was a mom, a caretaker.

“We” inhabit a world that is invisible to those who live on the other side. Those who never heard of a Regional Center or an infant development program. Those who contribute to the March of Dimes to fix other people’s problems. Those whose worst fear about their kids is that they won’t get into the college of their choice. Those who have never paced the halls of Children’s Hospital in a trance of fear and hope. Those whose lives do not revolve around the constant care of 13-year-old daughters.

At 13 years old, my daughter has never crossed a busy street by herself. She has never been dropped off at the mall to hang with friends. She has never demanded Guess jeans or stayed out past curfew.

Still, she is just right. Her own kind of just right. She writes clever stories. She laughs so hard you can’t help but join in. She made a party hat for our kitty cat. She screams at her little brother as often as possible. With total abandon, she sings along to Broadway musicals and assigns us all parts. She cooks her own baked beans. Her speech lessons yielded audible words, and her occupational therapy yielded a kid who could run. And just last week, after being shown about 53 times—loop up, loop over, loop through—she learned to tie her own shoes.

When I see a child with a disability who is struggling to speak, or learn, or be understood, or to walk, or to maneuver a wheelchair, I think: That child is familiar to me. I know that child. The disability is irrelevant. Disabilities just make things hard to do. But disabilities remind me of my daughter. And so, of course, I don’t cringe or give surreptitious looks or look away. I really want to stop and smile.

When parents like me are out and about without our kids, we can “pass” for “regular parents.” When I am “passing” and I encounter a family with a little one who is disabled, I want to rush over and say, “I have a child like yours. I am a parent like you.” Sometimes I even do. I don’t know exactly why I do, though. Maybe it’s because we are comrades in arms—armed against the onslaught of curious looks, doubting Thomases and faulty experts, armed against our uncertain futures.

We aren’t in the majority. I am glad of that. This is not a club any of us wanted to join. But we sure could use some open-hearted acceptance of our kids from non-members. If you’d like, we could offer you an honorary membership for that. That’s a lot easier than the dues you have to pay to get in otherwise.

In the classic film, Heidi, when Clara miraculously rises from her wheelchair, that is only one possible fairy tale ending. A more interesting ending might be young, pink-cheeked Heidi proclaiming to the world, “Accept Clara in the chair. After all, she’s just sitting down.”

Miracles do happen. I dream of a miracle, a healing for my daughter, and here is how it would go: In a flash of light, the world would be miraculously healed, and be able to see how peachy and perfect my Sophie really is—just as she is.

~Jolie Kanat

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