How often we parents say that as we soothe our children after they’ve been wounded. We do it when they are lying tangled in their bed sheets with stomach cramps or on a hospital gurney awaiting the cast, the stitches, the pain meds. We do it when the injury is less obvious but no less great, when they are stung by rejection or hobbled by failure.
Like most of you who read BLOOM, I am the parent of a child with a disability. But unlike many of you, I have the same disability as my child does, a genetic bone disorder called osteogenesis imperfecta (OI), which causes fragile bones. My oldest daughter, Leah, 10, inherited OI, while my younger two children, Meg and Ben, did not.
When I say to Leah, “I know it hurts,” I really mean it. I know exactly what a fractured leg or arm feels like. I know the helpless panic that sets in when an X-ray tech says, “I have to move you a little bit to get the right angle.” I know the resigned dread of realizing that some long-anticipated plan—summer camp, a family vacation, a starring role in the school play—will fall victim to this capricious disorder.
This knowledge is actually a liability in the harrowing hours following a fracture. I have had many emergency-room conversations about Leah’s care while sitting with my head on my knees and an ice pack pressed to the back of my neck in a frantic effort to stave off the dizziness and nausea that threaten to transform me from competent mother to helpless patient. The memory of my own three dozen fractures abides, literally, in my bones, emerging as a consuming menace when I am confronted by Leah’s hoarse cries, the hospital’s antiseptic odor and harsh lights, and the crushing knowledge of how this fracture will bring hopes and plans clattering down in a great heap.
I’ve often heard parents say, “If I could bear the pain for my child, I would.” I have never said or even thought such a thing. I hate the pain. I just want it to go away and leave both of us alone. And so, when my daughter cries in her lowest moments that she would rather die than break another bone, I hear her. I know. The terrible part is that my knowing doesn’t make it any easier for her—at least not in those moments when nothing but pain exists or matters.
In less brutal moments, my experience with OI can make things easier. When Leah was diagnosed at six weeks old, we experienced none of that overwhelmed uncertainty that many new parents face when they are told their child has a disorder they’ve never heard of. I not only had 31 years of living with OI, but also served as the communications manager for the nonprofit OI Foundation until right before Leah’s birth. I had the latest information about promising drug treatments, new casting and surgical techniques, and physical therapy. We have very few horror stories about self-righteous doctors insisting they know better than us, or school personnel unwilling to accommodate Leah’s needs. I attribute this mostly to sheer good luck, but my years of experience have also made me a confident advocate. I have sought out professionals open to partnership and willing to concede that, often, we know more than they do. Of course, most parents of kids with disabilities become equally confident and informed. My personal and professional knowledge of OI just gave me a head start.
But day to day—when we are not dealing with a new fracture or meeting with professionals to chart our course—does my having the same disorder as my daughter make a difference? That’s a conversation I’d like to have with Leah when she’s older, because I’m sure her perspective is different than mine.
My sense is that our shared identity as people with OI significantly affects our family’s daily life, beyond some obvious limitations: I can’t help my four-year-old navigate the monkey bars, we don’t do family bike rides, and we’re not at all concerned with raising star athletes. In me, all three of my kids have an ever-present reminder that people with disabilities can live fulfilling, happy, successful lives. I hope that our abundant life with OI makes clear the folly of cultural obsessions with beauty, athleticism, and bodies that meet narrow standards of perfection. I hope that seeing me as a wife and mother will free Leah from agonizing doubts that anyone could ever love someone with a body that doesn’t live up to those standards. I lived with such doubts for years, and in many ways, that pain was harder to bear than the pain of broken bones.
Leah looks more like me than my other two kids. I look at her and see my long, double-jointed fingers (she and I enjoy showing off our disconcerting “finger tricks”); my flat feet and soft ankles; my skinny, slightly crooked limbs; my eyes with their bluish tint, which are a telltale sign of OI. I hope that, as she grows, Leah looks at me—at my spidery fingers and strangely colored eyes, my wobbly gait and odd angles—and sees something of herself. And I hope that in that recognition, she discovers a source of comfort and confidence.
Ellen Dollar writes about family and motherhood, faith, and living with a bone disorder which she shares with her oldest daughter. She is working on a book (to be published by Westminster John Knox in 2011) about the ethics and theology of assisted reproduction and genetic screening, drawing on her experience as someone with a genetic disorder who chose to have biological children with a significant chance of inheriting the disorder. Ellen blogs at Choices that Matter and The Five Dollars.