This low light of winter can turn a gray mood into black. The wind is sharp and bitter cold, cuts through to my skin, chaps my hands. Everything bears a pathetic hard-edged shadow that is both blindingly bright and dismal at the same time. This sun, which comes at me nearly horizontal in the sky, takes me down. I want to look away. It casts its long, suffering shadows that I know will take months to retreat. The ground is solid and unforgiving now, icy morning crystals frosting blades of grass soon to be obscenely covered in white.
I learned this morning that my new friend’s (she’s really the dear friend of a friend and someone I’ve never met before) twenty-one month old son, who is dying from Tay-Sachs disease, has started having seizures. When I read her words I felt a sharp jab in my heart, the familiar saline sting in my eyes. I know seizures, I thought, I hate them. I’m not sure when little Ronan’s seizures began, nor what they are like, nor how long they last. But perhaps, as sick as it sounds, all that is immaterial—doesn’t matter—because with Tay-Sachs, from what I know of it, seizures are simply the inevitable.
And then, shutting my eyes, I to try to conjure up the image of my friend holding her son through his seizures, like I’ve done with Calvin countless times, while at the same time shutting my eyes to try and blot out the image of my friend holding her son through his seizures.
I wish it were all just a terrible dream—these seizures—this grief, this gradual loss some of us experience with our children, albeit it in vastly different ways from each other. This daytime nightmare that follows us into sleep, with its hot merciless brilliance hurling us into darkness, is difficult, if not impossible, to escape. And so we sit with it. We must let it all become a part of us like smoke seeping into our lungs, radiation into our pores, cancer into our marrow, and we learn—somehow—to live with it. Because what else can we do but to die?
I learned this morning that my new friend’s (she’s really the dear friend of a friend and someone I’ve never met before) twenty-one month old son, who is dying from Tay-Sachs disease, has started having seizures. When I read her words I felt a sharp jab in my heart, the familiar saline sting in my eyes. I know seizures, I thought, I hate them. I’m not sure when little Ronan’s seizures began, nor what they are like, nor how long they last. But perhaps, as sick as it sounds, all that is immaterial—doesn’t matter—because with Tay-Sachs, from what I know of it, seizures are simply the inevitable.
And then, shutting my eyes, I to try to conjure up the image of my friend holding her son through his seizures, like I’ve done with Calvin countless times, while at the same time shutting my eyes to try and blot out the image of my friend holding her son through his seizures.
I wish it were all just a terrible dream—these seizures—this grief, this gradual loss some of us experience with our children, albeit it in vastly different ways from each other. This daytime nightmare that follows us into sleep, with its hot merciless brilliance hurling us into darkness, is difficult, if not impossible, to escape. And so we sit with it. We must let it all become a part of us like smoke seeping into our lungs, radiation into our pores, cancer into our marrow, and we learn—somehow—to live with it. Because what else can we do but to die?
 |
| photo by Michael Kolster |
No comments:
Post a Comment