He flops forward in between his crossed legs, face first into the water. His nurse fishes him out, water cascading down his limbs into the bath. She carries him to the bed, starts her timer, covers him with a towel and dabs his wet skin. After two-and-a-half minutes she calls me on the emergency cell. I jump, because I know what she is going to say, but can barely hear her so I tell her we’re coming straight home.
Once home, I tiptoe upstairs. She’s sitting next to his bed, its safety panel down, and I can see his sleeping face, which is flawless and wan like a an eggshell. His hands were blue up to his wrists, she whispers, he didn’t breath for at least a minute.
Though the seizure was just after 4:00 p.m., he’ll sleep twelve hours, waking only for his medicines and a diaper change.
Michael and I warm our dinner in relative silence, thankful for the lasagna that our neighbor Barbara left on our doorstep the night before. We eat it while watching The Broken Circle Breakdown. As the subtitles roll the film unfolds into a drama about the parents of a little girl suffering from leukemia. Because of our bad memories of hospitals, we’re not quite sure we want to watch, but something about it compels us. Maybe it’s the tattooed Belgian cowgirl and her carefree ways. Perhaps it’s her ruggedly handsome boyfriend, the smitten one who plays bluegrass in a band of bearded minstrels. Or maybe it’s their little girl, a few years younger than Calvin, who has the same perfect skin that sallows with the chemo even as her hair falls out of her head.
Tearfully, we make it through the film, which weaves its way in and out contemplating the existence of God. It holds both sides equally well, making the case for a Godless universe and one where spirits come back as birds and stars. To me the arguments aren’t incongruent. Nature is God. God is nature. It’s as simple as that. No sadist God exists to punish little children, take sides in wars, inflict suffering on the masses, answer some prayers but not others. It's as simple as the fact that bad things happen to good people, like me and Michael, and Calvin, like that sweet, ill girl and her parents.
I go to bed feeling so sorry for my little bird who has to suffer so much, his headaches and tummy aches and cramps and seizures and side effects. He suffers the burden of not being able to tell us what hurts. Sometimes I wonder if he hears voices or sounds, sees apparitions, brought on by the drugs he takes to quell the seizures. I wonder if he knows the sound of a bird, which is not unlike the trills he sometimes makes. I’m sure he’s never seen a star to know what one is.
They say the universe is infinite. So too, then, is its suffering, its beauty, its mysteries, its despair, circling around us in ever-expanding orbits.
I’m tired. I am not the person my husband married. I’m stuck between these four walls listening to a whimpering kid who I can’t seem to help no matter what I do. Even Rudy paces in broken circles around the house. It’s what we do. Our days are as infinite as they are numbered.
Once home, I tiptoe upstairs. She’s sitting next to his bed, its safety panel down, and I can see his sleeping face, which is flawless and wan like a an eggshell. His hands were blue up to his wrists, she whispers, he didn’t breath for at least a minute.
Though the seizure was just after 4:00 p.m., he’ll sleep twelve hours, waking only for his medicines and a diaper change.
Michael and I warm our dinner in relative silence, thankful for the lasagna that our neighbor Barbara left on our doorstep the night before. We eat it while watching The Broken Circle Breakdown. As the subtitles roll the film unfolds into a drama about the parents of a little girl suffering from leukemia. Because of our bad memories of hospitals, we’re not quite sure we want to watch, but something about it compels us. Maybe it’s the tattooed Belgian cowgirl and her carefree ways. Perhaps it’s her ruggedly handsome boyfriend, the smitten one who plays bluegrass in a band of bearded minstrels. Or maybe it’s their little girl, a few years younger than Calvin, who has the same perfect skin that sallows with the chemo even as her hair falls out of her head.
Tearfully, we make it through the film, which weaves its way in and out contemplating the existence of God. It holds both sides equally well, making the case for a Godless universe and one where spirits come back as birds and stars. To me the arguments aren’t incongruent. Nature is God. God is nature. It’s as simple as that. No sadist God exists to punish little children, take sides in wars, inflict suffering on the masses, answer some prayers but not others. It's as simple as the fact that bad things happen to good people, like me and Michael, and Calvin, like that sweet, ill girl and her parents.
I go to bed feeling so sorry for my little bird who has to suffer so much, his headaches and tummy aches and cramps and seizures and side effects. He suffers the burden of not being able to tell us what hurts. Sometimes I wonder if he hears voices or sounds, sees apparitions, brought on by the drugs he takes to quell the seizures. I wonder if he knows the sound of a bird, which is not unlike the trills he sometimes makes. I’m sure he’s never seen a star to know what one is.
They say the universe is infinite. So too, then, is its suffering, its beauty, its mysteries, its despair, circling around us in ever-expanding orbits.
I’m tired. I am not the person my husband married. I’m stuck between these four walls listening to a whimpering kid who I can’t seem to help no matter what I do. Even Rudy paces in broken circles around the house. It’s what we do. Our days are as infinite as they are numbered.
I'm sorry just so very sorry. Hang in there. Your words speak infinite volumes.
ReplyDeleteOh, Christy, I immediately found myself looking for an "Originally published" date on this- hoping it was a past post and that it did not just happen. Tight hug to you. xxoo
ReplyDeleteWe need each other's strength at times like these. We are all part of the community....
ReplyDeleteBeautifully written..big hugs..xoxo
ReplyDeleteNurse Barbara
Christy, as a writer I know that the ability to articulate your life so beautifully is not often sustaining -- but I'll tell you that doing so sustains others. I am grateful for your writing, for you, for how you're living in the world.
ReplyDelete'They say the universe is infinite. So too, then, is its suffering, its beauty, its mysteries, its despair, circling around us in ever-expanding orbits."
ReplyDeleteThis made me cry. It is beautiful and simple and so true. Thank you.
I'm so sorry, Christy. With the label on your post "despair" I can feel the weight from your home to mine. If I had posted within these last few difficult months, there would be a label of "resignation". I am in awe of the sadness of epilepsy, of how it drains the life from its sufferers and drains the color from the caretakers' lives. My heart is with you today.
ReplyDeletedear amy,
Deletei feel you.
hang in there, sister.
christy