When you have kids, you expect, at some point, the tough questions:
“Where do babies come from?”
“What happens when you die?”
“Do you believe in Santa, mom?’
Each time, your carefully constructed answer isn’t enough anymore. They want more details. They want to know why.
Lilly’s been asking these questions, in one form or another, over the past few years, and it’s getting harder to answer them in a way that is both honest and at her level of comprehension.
But I’ll take all these tough questions over the ones that I’ve dreaded since she was born:
“Why do I have a scar on my back?”
“Why do I still wear a diaper?”
“Why can’t I pee like you?”
Ever since the questions started appearing, I’ve tried to calmly and matter-of-factly explain, in very simple terms, the concept of spina bifida, and that she has it. She has a scar on her back because she was born with a boo-boo there, and the doctor had to fix it. She wears a diaper and pees differently because of the spina bifida.
Most of the time, my answers satisfy her, or at least, they seem to. She’ll go back to whatever she was doing, happily painting or drawing or dancing (dancing!). It doesn’t seem to affect her in any lasting way, at least not yet. She’s simply curious, like when she asked about the autistic boy next door.
“He was just born that way,” I answered, “Just like you were born with spina bifida.”
And that was enough. Or it seemed to be. I thought I could see the wheels turning in her mind, churning it over, digesting it, paving the way for the next inevitable question: but why?
It’s a question I’ve been struggling with since the diagnosis. Not so much anymore; I’ve come to accept that there is no reason. It just is what it is.
But at the beginning, it was hard. The grieving mind searches for a reason. I’m not a religious person, so the usual platitudes-“God doesn’t make mistakes,” or “God gave a special child to special parents”-didn’t help at the time, though I understood their intent. Well-meaning people wanted to make me feel better. I don’t think I wanted sympathy. I wanted my grief and rage to be acknowledged.
This morning while I cathed her, the question finally arose: “Mom, why do I have spina bifida?”
Still bleary-eyed from sleep, I tried to explain it as simply as I could, that when she was in my tummy her spine didn’t form correctly, and that caused some problems.
“I wish that didn’t happen. I wish it had formed correctly,” she said.
“I do, too. But it did happen, and all we can do is make the best of it.”
“Will it ever go away?”
A tiny pause as I swallowed my despair.”No, baby.”
“I’ll have it ’til I die?”
“But when I’m in heaven, I won’t have it.” (Though I’m not religious, I’ve used the concept of heaven to explain what happens after we die. It’s fairly simple, and preferable to telling your seven-year old “I don’t know.”)
“Nope, you won’t have it. But right now, I’m going to help you, okay?”
She accepted this with equanimity, and we went on to talk of other things. But I imagine within a few years she will go through her own circuit of emotions. All I can do is listen, and acknowledge whatever emotions come up. And then proceed to let her know that spina bifida does not define her. It’s part of who she is, but it need not limit her in any way.
And don’t waste too much time on the why; concentrate on the what: what makes you happy? What makes you wonderfully you? Figure out what you want to do with your precious life, and then go for it. Don’t get stuck at why.