Aidan died a year ago today. Below the jump is something I wrote a few months ago but could not find a publisher for. I post it here as a part of his continuing presence in my life.
I’m weaker without him.
My fourteen year old son, Aidan, was profoundly disabled. He could not lift his head, or turn his body, or reach out his hand with purposive intent. His cognitive abilities were those of an infant, or maybe a toddler. Caring for him had come to define our lives: my wife’s, my daughter’s and mine.
He died this past March . There had been at least two near death moments in his short life, and I had imagined several ways in which he might have left us: pneumonia; complications from his intractable seizure condition; a recurrence of the gastrointestinal problems that had hospitalized him for three months last year. It turned out to be none of those, but just a bug.
One Wednesday afternoon he came down with a stomach flu that had been going around. The symptoms were not severe, with only a bit of a temperature. We treated him with ibuprofen and extra fluids. It seemed fairly routine.
The next morning I peaked in on him before work and he was sleeping soundly. I did not wake him to wash him up; the night before he had not slept well and I thought it best to let him rest.
An hour later, in the middle of my lecture to a classroom full of college students, my cell phone rang. I do not usually carry it, and almost never have it turned on when I am teaching, but I had taken it that day just in case Aidan’s illness required a change in our daily schedule. That was how we lived, arranging our comings and goings around Aidan’s health. It was nothing out of the ordinary. We were used to it.
My wife’s voice cried into my ear: “I’m taking him to the Emergency Room! His temperature is 108!” Something about his atypical body had allowed the bug to surge out of control. She did not have to say anything else. I knew which hospital she would go to and what I needed to bring in anticipation of an admission. But I did not really understand what a temperature of 108 does to a body.
What happens is that shock sets in and organs shut down. “Multiple system organ failure” is what they call it. The emergency doctors kept him alive and sent us to another hospital with a pediatric intensive care unit. It was too late, however. He lived for another week. We were able to bring him home for the last day and he died in his own bed with his mother and father right next to him.
And now I am weaker without him. Weaker in a tangible, physical sense.
In the familial division of labor that we had gradually constructed over the years, one of my main tasks was washing Aidan in the morning. The duty required both delicacy and strength. I had to tame my clumsy hands to lather his face without stinging his eyes. The small puncture in his belly, where his feeding tube ran into his stomach, required gentle cleaning. But then my fine motor skills would give way to gross muscle power. To turn him on his side and wash his back, I had to slide my forearms under him and slightly lift his ninety pounds up and over. Every morning my biceps tensed and relaxed in subtle isometric exercise, my pectorals shifted in and out.
More energy was required to get him up and into his wheelchair once the morning ablutions were completed. I would curl my right arm behind his head, grasping him under his right shoulder, and slip my left arm under his legs, between his knees and his butt, cradling him with all of my upper body strength. Slowly, slowly I lifted his full weight, pushing through my knees and straightening my back, pivoting from bed to chair, careful always that his limp head was steady and his finishing posture in the seat was true. Some mornings had to lift him a second time to press him back into the chair and align his shoulders.
His mass did not tax me; it made me stronger. As he grew from seventy to ninety pounds, my muscles responded. This was my gym: each increment of his weight gain was another step increase for my daily exercises.
Aidan’s life was limited in many ways. We had to catch ourselves from characterizing him in terms of what he could not do, that list was so long. He could not stand, he could not walk, he could not see, he could not speak… But we came to understand the many things he could do through his mere presence. He could define our love. He could change our vision. He could inspire people around him to demonstrate their humanity. And he could make his father stronger.
His weight is gone now, my morning ritual done.
I can feel a slackness slowly creeping into my arms, a certain debility. Some of the heavy things in the garage and the basement, the things it is my job to lift, seem a bit more onerous now. The line of my chest is flattening out some. In just a few months his absence has changed my body.
I am not a particularly physical man. Only occasionally, before Aidan and with Aidan, did I ever find the determination and discipline for a regular work out. He was my exercise, my reps. My wife reminds me that I need to get out and walk or lift weights or ride the bike or something to stave off my post-fifty paunch. It hasn’t come to me yet.
But that is what it must be. Finding a way to live without him is not only an emotional effort, it must be a physical activity. Something that allows me to gain the same kind of strength he gave me. Something to remind me, deep in the form of my body, of his substance, his solidity.