odious, unimaginable decisions to be discussed, to be made. Which seizure medications might be effective, and in what combinations? When Ronan could no longer swallow, would we decide to place a feeding tube no matter how his other faculties had been affected, or would we let nature take its course? At each stage of potential intervention, hospice care asks: “What does it lead to? What is it for?” Would we know how to listen to what Ronan’s body was telling us? Or would we just desperately cling to our son?
I talked more with other moms of Tay-Sachs children, cobbling together a tentative care plan for Ronan and discussing avenues for advocacy, research and support for families. These mighty, indefatigable dragon moms gave me all the grim details, compassionately but matter-of-factly, and without hesitation or pity. “Things have a habit of changing around their birthdays,” they warned. The traditional milestones turned on their heads. We no longer wondered “What if he starts talking today?” but “What if he stops smiling, cooing?” We didn’t ask “I wonder when he’ll take his first step,” but “I wonder when he’ll stop moving completely.” A daily list of tyrannical what-ifs. What was supposed to mean one thing suddenly meant something else entirely. Waiting for change felt like waiting to be punched in the face, kicked in the gut, stretched out on some rusty medieval rack to be tortured slowly.
An elaborate taxonomy of transformation exists in our culture. Change your body, change your life, take charge of your financial future, stop wrinkles. Americans are driven by future-directed resolutions. We thrive on the idea of change, the business of ambition. My own childhood fantasy of transformation was just a more extreme variation on this theme. But Ronan would never speak, or write, or do much with his hands besides spin the little lizard inside the plastic egg on his bouncer, turn the pages of a soft book and bat the chimes of his dragon toy. He had, literally, no future. How did we understand the meaning and purpose of Ronan’s life in a society—like most societies—that was dedicated to progress and achievement, where going back was synonymous with failure? Where the longer life was seen as the more successful one, the one worth fighting for? If you were unable to tell your own story, did it mean you didn’t have one to tell?
We needed new words and a new language, and it could be created only through discourse, which could only happen between people using language to make their experiences known. Enter art in its purest form: mucking up meaning. Disrupting our worldview. Redescribing story, Ronan’s story—his path, his myth—could blaze new pathways of understanding not only for me but for others.
• • •
As a young teenager in the late 1980s I was a counselor at an Easter Seals camp in Colorado. I remember so well watching one of the campers—she was about ten or eleven—sit up on a horse for the first time. I can’t remember her specific disability, although I think it was spina bifida, but I do remember there were supports on the horse’s saddle, and that she was so excited that she had been unable to eat breakfast. When she was finally situated, the horse trainer and I stepped away. She didn’t move. She stared into the distance, completely still.
“You can tell her to go and she will, or I can nudge her,” said the trainer, making a move toward the horse.
“No!” the girl shouted. “Don’t!” The horse neighed and stomped a hoof lightly but stayed where she was. “I want to stay just like this. I want to be this. I want to be right here.
I am the horse
.” We looked at her. “I’ll move when I want to,” she told us.
And so she sat. For about twenty minutes. Each kid was only allotted thirty minutes, and I was getting worried that she’d regret not having gone somewhere, but she looked so peaceful that I didn’t want to push her. We’d also
I talked more with other moms of Tay-Sachs children, cobbling together a tentative care plan for Ronan and discussing avenues for advocacy, research and support for families. These mighty, indefatigable dragon moms gave me all the grim details, compassionately but matter-of-factly, and without hesitation or pity. “Things have a habit of changing around their birthdays,” they warned. The traditional milestones turned on their heads. We no longer wondered “What if he starts talking today?” but “What if he stops smiling, cooing?” We didn’t ask “I wonder when he’ll take his first step,” but “I wonder when he’ll stop moving completely.” A daily list of tyrannical what-ifs. What was supposed to mean one thing suddenly meant something else entirely. Waiting for change felt like waiting to be punched in the face, kicked in the gut, stretched out on some rusty medieval rack to be tortured slowly.
An elaborate taxonomy of transformation exists in our culture. Change your body, change your life, take charge of your financial future, stop wrinkles. Americans are driven by future-directed resolutions. We thrive on the idea of change, the business of ambition. My own childhood fantasy of transformation was just a more extreme variation on this theme. But Ronan would never speak, or write, or do much with his hands besides spin the little lizard inside the plastic egg on his bouncer, turn the pages of a soft book and bat the chimes of his dragon toy. He had, literally, no future. How did we understand the meaning and purpose of Ronan’s life in a society—like most societies—that was dedicated to progress and achievement, where going back was synonymous with failure? Where the longer life was seen as the more successful one, the one worth fighting for? If you were unable to tell your own story, did it mean you didn’t have one to tell?
We needed new words and a new language, and it could be created only through discourse, which could only happen between people using language to make their experiences known. Enter art in its purest form: mucking up meaning. Disrupting our worldview. Redescribing story, Ronan’s story—his path, his myth—could blaze new pathways of understanding not only for me but for others.
• • •
As a young teenager in the late 1980s I was a counselor at an Easter Seals camp in Colorado. I remember so well watching one of the campers—she was about ten or eleven—sit up on a horse for the first time. I can’t remember her specific disability, although I think it was spina bifida, but I do remember there were supports on the horse’s saddle, and that she was so excited that she had been unable to eat breakfast. When she was finally situated, the horse trainer and I stepped away. She didn’t move. She stared into the distance, completely still.
“You can tell her to go and she will, or I can nudge her,” said the trainer, making a move toward the horse.
“No!” the girl shouted. “Don’t!” The horse neighed and stomped a hoof lightly but stayed where she was. “I want to stay just like this. I want to be this. I want to be right here.
I am the horse
.” We looked at her. “I’ll move when I want to,” she told us.
And so she sat. For about twenty minutes. Each kid was only allotted thirty minutes, and I was getting worried that she’d regret not having gone somewhere, but she looked so peaceful that I didn’t want to push her. We’d also
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