This is the story I told at last weekend’s Speak Up storytelling event at Real Art Ways in Hartford. If the stories ring familiar, it’s because I’ve told them before. This story is essentially a revised version of an essay titled “Resemblances” that was published by Brain, Child magazine last spring. Sometimes I feel like I am constantly repeating myself when it comes to writing and speaking on genetics, disability, ethics, and choice. I am repeating myself…but the questions and issues raised by stories like mine are so important that I think they bear repeating, especially when there is an opportunity, as there was this weekend, to reach new audiences.
When my oldest daughter Leah was born, many people made the same observation: “Look at those fingers! So long and skinny…just like yours, Ellen.” Right after she was born, my husband went with her for a bath as I was stitched up after my c-section. When he returned, he mentioned that her eyes were a “funny color.” All of those observations, straightforward and innocent on the surface, let me know that some of my darkest fears were probably being realized.
My daughter’s long, skinny fingers and toes, the bluish color in the whites of her eyes—these were signs that Leah had inherited a scrambled gene that would wreak havoc on her skeleton. When she was six weeks old, we received official word that Leah had indeed inherited my bone disorder, osteogenesis imperfecta (OI)—a condition that would likely cause her many fractures (I had about three dozen before the age of 11) and possibly painful corrective surgeries. I clutched her fiercely against my chest and told God that he had damn well better take care of this child. That day 14 years ago was the hardest day of my life.
I have spent much of the past 10 years or so writing about genetics and disability and the choices made possible by increasingly sophisticated technologies that allow parents to choose, to some extent, what sort of child they might have. I have talked to dozens of potential parents who, like me, have some serious genetic baggage and fear putting its weight on their children’s shoulders. And I have talked to some people who wonder whether, if their child does inherit some genetic menace that wreaks havoc on that child’s health and well-being, will they regret that they took such chances with a genetic lottery stacked against them?
I tell such people that I think it’s impossible, barring extreme psychological dysfunction, to regret your own child’s existence. And I tell them about my daughter Leah, who is bearing the weight of my own genetic baggage on her fragile skeleton, who has, yes, broken a dozen bones and deeply mourned the losses that come when yet another broken bone messes with our plans. I have watched Leah sink into a place that is really dark and really sad. But I have other stories to tell about Leah, not just the dark and sad ones.There’s this story: One Sunday morning several months ago, I slipped on some black ice when going to get our newspaper. Landing hard on my back, I broke two ribs and a shoulder bone, and partially collapsed a lung—the kind of injuries that stronger-boned people incur when they fall from trees and roofs. I managed to crawl from the frozen front walk into our entrance hall, but couldn’t go any farther. While I lay there waiting for the ambulance to arrive, as my husband reassured my two younger children and called my mom to come stay with the kids, as I struggled to breathe, Leah sat next to me on the floor. She just sat there, silent. At one point, I said to her, “You know, Leah, don’t you? You know how I’m feeling.” I wasn’t talking just about the pain, but also the crushing disappointment of a regular day ruined, the weightier knowledge of the ruined days to come. I was talking about feeling powerless in the face of something as stupidly mundane as ice, and being betrayed by the fragile body gaining the upper hand on the strong spirit. Leah nodded. Yes, she knew.
A few months later, I was heading to pick Leah up from church choir practice. I was dreading it, because I knew that Leah would be getting some bad news at the rehearsal. For Leah, singing is a passion, and when she joined our church choir about three years ago, she found another family, a community. The choirmaster was a young man called Dr. Roberts. Dr. Roberts is a talented musician but also a gifted teacher. Leah will, I’m sure, remember him for the rest of her life as the kind of teacher and mentor who changed her life. I knew that during this particular rehearsal, Dr. Roberts was planning to let the kids know that he had taken a job in New York City and would be leaving. I knew Leah would be devastated.
She came out from the church to the parking lot and with tears streaming down her face, she said, “You know Mom? This is his dream, this job he’s taking in New York. It’s good. It’s just all good.”
So it seems that, at not quite 15 years old, Leah knows what love looks like. She knows how to help carry another’s burden. She knows that sometimes an empathic presence is more helpful than words. She knows about wanting the best for someone you care about, even when their best is your worst. That she is capable of such wisdom at such a young age is proof to me that I can never regret anything about the person Leah is and is becoming, brittle bones and all.
I want to be perfectly clear, though, about what I don’t mean. I hate those clichés about how we should be grateful for the shitty stuff in our life because it teaches us so much, about how “Everything happens for a reason.” I don’t believe that one bit.
But I’m beginning to understand that Leah’s inheritance from me is not merely a faulty gene and a fragile skeleton, but also the truest kind of compassion—the kind that arises when you know what pain looks like and feels like, and you recognize another’s need, and know just what to do.
Do I regret that Leah inherited my fragile bones? I don’t love it. I even sometimes hate it.
But while I sometimes wish I could have spared her that particular genetic fate, I’m also profoundly grateful that it was not in my power to decide what kind of kid I would get.
Because I never could have predicted, much less devised, the wounded and gracious person my daughter is becoming.