Today we woke up to a still landscape of snow. Ronan was up early, before dawn, so we watched the room fill slowly with light as snow crystals melted on the glass in the living room.
Today we met with a county health care coordinator — another new file full of forms for the medically fragile, home health care, respite care, physical therapy, hospice nurses. We discussed advanced directives and DNR forms. Which doctors and hospitals to avoid; who to call if you need this or this or this; insurance options. Information, options, forms, forms, forms. Sign here and there and here.
Through it all Ronan bounced and chattered and smiled.
Today I’m posting a recent article I wrote for the National Tay Sachs and Allied Diseases Organization.
“What Happened to Your Baby?” Field Notes for Response
When my family lived in Nebraska, my mother and I were out on the porch one summer afternoon when a woman walking by on the street approached us and started asking questions: “What’s wrong with your baby? How come she looks that way?” I had just been fitted with my first artificial leg – a scary-looking 1970s contraption made of cloth, metal and wood. My mom told the woman about my disability and she replied, “Well, I guess you can love her anyway, even if she only has one leg.”
One of the hardest parts of living with a disability is dealing with other people’s responses to it. If you fall too far outside our (ridiculously restrictive) assumptions about what a “good” body looks like and does, people assume that one quick glance is enough to pass judgment on your quality of life. I’ve been both pitied and admired, and it’s sometimes difficult to decide which is worse. Some examples: “If I had one leg, I’d never leave the house!” Really? That seems impractical. “I can’t imagine how you live.” Well, day by day, just like everybody else. “You are so brave.” Um… because I left my house?
When it comes to disability, people suffer from a lack of imagination. They also don’t get much help from the media, literature and popular culture, where the stories are either full of pity and sadness (remember Dickens’ Tiny Tim?) or impossible physical feats performed by inspiring people with disabilities who run marathons and climb mountains. Perhaps even more disturbing for me was the realization that others’ tragedies make people feel better about themselves. If somebody else has it worse than you, you can walk around feeling lucky for a few minutes. It’s a pretty nasty feeling to be the mirror for someone else’s worst fears. When people ask these difficult questions, their eyes glaze over with sadness. Then you feel your own heart race, your cheeks flush. As the mother of a little boy with Tay-Sachs, the idea of hearing the question “What happened to your baby?” makes me want to crawl out of my skin.
Living with a disability and being the parent of a sick child are both extraordinarily difficult, in ways that are probably impossible to imagine for people who haven’t experienced them. But it is not all pain and moaning and suffering. There is pure joy, laughter, hope, and LIFE. That’s what most people fail to imagine, but it’s not your responsibility to make them understand that; it’s more important that you understand it yourself. People assume that you are your disability; that you must spend all day bemoaning your fate. Yes, that happens – but it also happens to plenty of non-disabled human beings. It’s important for us to remember as parents that our children are not just one thing – sick – and that our own lives as parents are more than just managing the illness and the many difficulties that brings.
“I could never do what you do.” “I don’t know how you cope!” “He is the definition of heartbreak.” (This last one is my favorite, since it makes me feel like Ronan and I are starring in a Lifetime movie.) These kinds of comments are usually well-meaning, but they are also an effort to create distance. Nobody is immune to disease or sickness or any other catastrophic event, and we are all just a disease, a decade, or an accident away from disability. So we’re afraid. Confronted suddenly with someone else’s experience of catastrophe, people feel helpless and stumble over their words. The death of a baby seems to go against nature, against the advertisements on television, against our hopeful delusion that being good people might keep chaos at bay. But chaos finds everyone – or as the philosopher Ziusudra mourned in 2700 B.C.E.: “Fate is a wet bank, my friends. Sooner or later it will make you slip.” Of course, spouting the existential ponderings of an ancient Sumerian might be a bit much for the supermarket checkout line.
We Americans thrive on notions of self-improvement and transformation; we are befuddled by situations that defy solutions. But as those of us with sick kids know, some situations can’t be fixed. Instead they must be borne in whatever ways we can manage. And it’s important to note that we, as parents, are not responsible for managing other people’s rude reactions or misconceptions. You may not be able to mitigate other people’s fears, but you can love your child. That’s your only job.
Babies with disorders like Tay-Sachs don’t care about perception, or measuring up, or looking a particular way. I certainly didn’t as a young child with a wooden leg. After that morning on the porch, my mother prepared a response for the question: “What happened to your baby?” Her reply: “She’s just fine. She uses a brace to help her walk.” On that summer morning almost three decades ago, she took me inside and she loved me, and she has loved me all my life. So when people ask questions about Ronan as his disease progresses, when they ask what happened to him, what’s wrong with him, I might say simply: “He is who he is, and he is mine.”