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.

Without Him

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 [2006]. 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.