many others, kept jutting into my mind, toppling me, together with these lines from Gerard Manley Hopkins’s poem about grief:
O the mind, mind has mountains; cliffs of fall / frightful, sheer, no-man-fathomed.
In the days following his diagnosis (“Babies with Tay-Sachs can live three years with good care,” I kept hearing the doctor intone), I was afraid to be alone with Ronan, terrified of the sadness and helplessness, the anger and fear that touching his head or his hands or his face provoked in me, these jagged feelings that punctured my day and made it difficult to do activities as simple as boiling water for tea, or pulling a few squares of toilet paper off the roll, thinking
Ronan will never be able to do anything as basic as this.
But on that first February morning, after his nap, I held Ronan without crying and waltzed him around the room without catapulting into the future. In an illogical way, this felt like progress.
Meanwhile, we were growing into Ronan’s terminal diagnosis and its attendant jargon. “Will you insert a
feeding tube
when he can no longer eat?” “What are your plans for his
end-of-life
care?” “Are you open to interventions like a
chest vest
or a
suction machine
to assist with
secretion control
when Ronan can no longer manage on his own?” Rick and I knew that how we responded to these monstrous, seemingly impossible but necessary questions would determine not only the course but the end of our son’s life. We sat stone-faced in the pediatrician’s office, understanding that we would never be the same. We felt grotesque and out of place in our own lives. You can, for just a moment, fuse grief like a bone, but the memory of the ability to bend lingers inside, like an itch running in the blood, just beneath the skin: relief is always only temporary. Grief, we understood, would now hijack a part of our day for the rest of our lives, sneaking in, making the world momentarily stop, every day, forever.
And I kept remembering moments from my pregnancy. In November 2010 I was at Yaddo, an artist’s colony in upstate New York, feverishly trying to finish the draft of a novel before Ronan was born. I was frantic, believing everybody’s warnings that “you’ll never have time to do anything once you have kids.” (This turned out, of course, to be absolutely false and just another silly thing people say, such as “Enjoy it now!” or “It’s only downhill from here” when one is pregnant and buying groceries at the store, filling the car with gas, et cetera.) I went a little feral during that time, typing away in my writing room—a sun porch clearly better suited for summer residents, with three walls made entirely of floor-to-ceiling windows. Until I finally admitted that the austerity of the cold was not assisting my creative process and decided to ask for a space heater from the kind caretaker who resembled Walt Whitman, I wore long underwear beneath corduroys and an oversized wool sweater, my heavy down coat and pink fingerless gloves (perfect to type in!) knitted by my friend Tara.
One morning, just before dawn, when I hadn’t spoken to another person in nearly three days, hadn’t eaten a single meal that did not involve peanut butter, and hadn’t slept more than two hours a night in nearly a week but instead had restless, almost violent naps full of vivid and labyrinthine dreams, I felt my stomach muscles begin to shake and then
move apart
. My ribs started to ache; when I touched them they were electric, ropy wires of vibrating bone, and they, too, were on the move. Muscles cracking, bones stretching. Ronan. The two of us were alone in that room; you probably could have seen the lights in our windows from a long way off.
A few skinny deer nosed around in the scattering of snow outside my window, unimpressed with my artistic ambitions. The trees were cocooned in ice. A terrified-looking squirrel slid ungracefully down a glassy branch and then scurried out of sight. I
O the mind, mind has mountains; cliffs of fall / frightful, sheer, no-man-fathomed.
In the days following his diagnosis (“Babies with Tay-Sachs can live three years with good care,” I kept hearing the doctor intone), I was afraid to be alone with Ronan, terrified of the sadness and helplessness, the anger and fear that touching his head or his hands or his face provoked in me, these jagged feelings that punctured my day and made it difficult to do activities as simple as boiling water for tea, or pulling a few squares of toilet paper off the roll, thinking
Ronan will never be able to do anything as basic as this.
But on that first February morning, after his nap, I held Ronan without crying and waltzed him around the room without catapulting into the future. In an illogical way, this felt like progress.
Meanwhile, we were growing into Ronan’s terminal diagnosis and its attendant jargon. “Will you insert a
feeding tube
when he can no longer eat?” “What are your plans for his
end-of-life
care?” “Are you open to interventions like a
chest vest
or a
suction machine
to assist with
secretion control
when Ronan can no longer manage on his own?” Rick and I knew that how we responded to these monstrous, seemingly impossible but necessary questions would determine not only the course but the end of our son’s life. We sat stone-faced in the pediatrician’s office, understanding that we would never be the same. We felt grotesque and out of place in our own lives. You can, for just a moment, fuse grief like a bone, but the memory of the ability to bend lingers inside, like an itch running in the blood, just beneath the skin: relief is always only temporary. Grief, we understood, would now hijack a part of our day for the rest of our lives, sneaking in, making the world momentarily stop, every day, forever.
And I kept remembering moments from my pregnancy. In November 2010 I was at Yaddo, an artist’s colony in upstate New York, feverishly trying to finish the draft of a novel before Ronan was born. I was frantic, believing everybody’s warnings that “you’ll never have time to do anything once you have kids.” (This turned out, of course, to be absolutely false and just another silly thing people say, such as “Enjoy it now!” or “It’s only downhill from here” when one is pregnant and buying groceries at the store, filling the car with gas, et cetera.) I went a little feral during that time, typing away in my writing room—a sun porch clearly better suited for summer residents, with three walls made entirely of floor-to-ceiling windows. Until I finally admitted that the austerity of the cold was not assisting my creative process and decided to ask for a space heater from the kind caretaker who resembled Walt Whitman, I wore long underwear beneath corduroys and an oversized wool sweater, my heavy down coat and pink fingerless gloves (perfect to type in!) knitted by my friend Tara.
One morning, just before dawn, when I hadn’t spoken to another person in nearly three days, hadn’t eaten a single meal that did not involve peanut butter, and hadn’t slept more than two hours a night in nearly a week but instead had restless, almost violent naps full of vivid and labyrinthine dreams, I felt my stomach muscles begin to shake and then
move apart
. My ribs started to ache; when I touched them they were electric, ropy wires of vibrating bone, and they, too, were on the move. Muscles cracking, bones stretching. Ronan. The two of us were alone in that room; you probably could have seen the lights in our windows from a long way off.
A few skinny deer nosed around in the scattering of snow outside my window, unimpressed with my artistic ambitions. The trees were cocooned in ice. A terrified-looking squirrel slid ungracefully down a glassy branch and then scurried out of sight. I
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