My daughter has MERRF Syndrome. You've never heard of MERRF. I know this, because essentially nobody has ever heard of it.
Let's assume you're not one of the two in a million people who has MERRF or close to someone who is, and I'll tell you what you're missing. MERRF is a disease of the mitochondria, which, as you may remember from high-school biology (I didn't), are what produce energy for your body. Bad mitochondria translate to lack of energy, which can result in deafness, epilepsy, dementia, organ failure and a host of other conditions. The insidious twist is that the disease is degenerative, so bad today almost certainly means worse tomorrow.
We found out my daughter has MERRF two years ago, when she was 4. Her unexplained hearing loss and uneven gait best described as "resembling a drunken stupor" led us to a series of doctors, including a geneticist. Because my daughter was adopted, we knew nothing about her medical inheritance until genetic testing revealed that she carried the MERRF mutation, a miscoding of the DNA that's passed maternally.
The diagnosis raised more -- way more -- questions than it answered. Will the disease show up in other organs? How exactly will it affect her development? Will there be a cognitive impact? And then there were the questions left unasked, not because we thought the doctors couldn't answer them, but because we didn't want to hear the answers. Does this mean she'll never be able to run, to dance, to raise children of her own?
But the big questions, those unanswered and those unasked, soon faded to the periphery, pushed aside by the day-to-day reality.
Here's what it's like to have a daughter with a degenerative disease. You spend hours a week in waiting rooms, waiting for the physical therapist, the speech therapist, the orthopedist, the ophthalmologist, the audiologist, or the neurologist. You decide to keep a visual record of your time in waiting rooms. You now have approximately 752 pictures of the two of you mugging for your camera -- smiling faces masking the anxiety, the exhaustion, the frustration at the hours wasted, hours when you should have been working and she should have been playing.
You hate your friends for complaining, for freaking out over their daughter's wrist sprained during gymnastics or their son's second stomach bug in one season. But you also hate when they censor what they tell you because, they say, their problems can't compare to yours. You're angry when they don't ask about your daughter; you're annoyed when they ask all the time. You realize there's no way they can win and eventually appreciate that they're trying their best -- that they really don't know what to say. Why should they? After all, clearly you don't know what you want to hear.
Your heart cracks a little when you watch your daughter watch the other kids run across your lawn. It breaks when she tries to walk to your car without her walker and wipes out on the pavement, resulting in yet another baseball-sized egg on her forehead. But then, oh then, your heart swells with joy when she writes her full name despite the tremors in her hand, or when she insists on riding the roller coaster "just one more time," even when her brothers are too scared to ride once. You ride with her (nausea be damned) because you know that this is her chance to feel what it's like to move unencumbered -- to be like everybody else flying through the sky. You clench the safety bar and squeeze your eyes shut; she raises her hands in the air, eyes open wide with wonder and delight.
In the beginning, when the diagnosis was old enough to have begun to sink in but new enough to be totally preoccupying, you allow yourself to wonder whether you would have gone ahead with the adoption had you known then what you know now. And you realize, surprisingly quickly, that the answer is an unequivocal yes. Because what you know now is so much more than what MERRF Syndrome and mitochondria are. What you know now is who your daughter is. You know how she rubs your back when you're tired and wants to debrief when you get home from work, asking who you played with and if you remembered to draw her a rainbow. You know that her teacher calls her "the mayor" of her kindergarten and what it's like, as your husband puts it, "to worship at the altar of her cuteness." You know that while MERRF defines so much of your time, it doesn't even begin to define your daughter. And so, like most every other mother you know, your worry depletes you, but never nearly so much as your love fills you up.