in the moment

Yesterday, I read a blog post written by a mother about her daughter, Lydia. Lydia’s father had found her blue, stiff and face down in bed, her death the result of a prolonged seizure, a moment I imagine most parents of children with epilepsy fear. Lydia’s mother had written how she was thankful that her daughter had “died in her sleep and not in the hospital hooked up to tubes,” a miserable state in which so many of us have seen our children.

Early this morning, a moment before sunrise, Calvin woke to his second seizure of the night, and after I syringed part of his morning seizure medicine into his mouth, he went right back to sleep. As I laid by his side, I feared he’d wake to a third, and even dreamed about it once I’d drifted off in his arms.

After I awoke a third time and while Calvin slept, I laid there thinking about Michael’s uncle who died over the weekend after a hard battle against cancer. Thinking about him and his family conjured a mix of emotions: gratitude for the fact that he’d remained sharp and coherent, deep sorrow that his body was forced to surrender to so much suffering. I thought next about my father, who had fought cancer for five years, including two consecutive bouts of pneumonia, before dying suddenly one night at home. He was only seventy. One of my brothers had said to my mother that Dad wouldn't have died if he'd been there, implying that my mother was somehow culpable. Hearing that sickened me. Then I thought about my mother, who is eighty-four and has been plagued by Alzheimer’s for at least thirteen years, perhaps decades. She has forgotten most of her life experiences, all of her friends and much of her family. The disease has shattered her coherence into tiny pieces, but when you ask her if she is happy, she’ll almost always say, “You betcha!” My sincere hope is that she will die peacefully in her sleep before the Alzheimer’s robs that happiness from her.

I thought, too, about my friend Chris who lost his fourteen-year-old son, August, last year, and my friend Christy whose son, Will, died just before his fifth birthday. Both boys were like Calvin in many ways. They were happy kids when they were feeling good, though both required intense around-the-clock care with feeding and bathing and diaper changing and transporting. Their parents' lives then seemed like ours, stifled in so many ways because of our severely disabled children. I wondered if they sometimes felt conflicted about their children, wondered too how their lives have changed in the absence of their boys.

Then I remembered a friend whose healthy son had been so very difficult to raise during his teens that she'd asked God to take him, and the mother of a child with leukemia who asked God to let her keep her daughter for a few more years to see if she'd excel in school, and I remembered thinking once or twice, if Calvin dies before he can walk by himself or say a few words, if it would all seem a waste.

Climbing back into bed with Calvin after giving him the rest of his morning seizure medication, I kissed him and imagined what life would be like for us if he died in the night. I'd no longer have to worry. I wouldn't have to give him medicine or see him endure seizures or headaches or tummy aches or dizzy spells or mania and I’d be able to sleep well, travel and relax. He wouldn’t have to seize or lie awake at night for hours in discomfort and I wouldn’t have concern about what might happen to him after we die, who will care for him, who will love him, who might hurt him. But he’d be gone and so, too, would his smile, his hugs and kisses and giggles, the smell of his breath and the feel of his soft, springy skin. My days would be empty and I’d lie awake at night searching the stars to find him. Perhaps my love of gardening would fade and my reservoir of thoughts and images to be put into words would wither and die. I wondered if I'd blame myself, wondered what would happen to my good marriage.

No matter how I looked at it though, whether wanting Calvin to live or imaging him gone, it all seemed so selfish. But then I stopped myself and thought of the suffering—this needless suffering of a ten-year-old boy who can’t tell us what he might want to tell us and doesn't know why he feels so incredibly bad much of the time—and it put me back in the moment, which is where I need to always be in this crazy, effed-up world. In this case, it happened to be in bed soothing my little boy, his arms around my neck where he so often wants them to be.

photo by Michael Kolster