Friday, August 7, 2009


It's been one of those days we're I've just had to be on. Not on in the sense that a simple device like a toaster can be turned on, or even like a car whose ignition has been turned over. I mean on like a bright carnival or a busy town or city. I felt like something that comes to life slowly. Something that gains momentum.  Something that builds more and more divergent purpose and energy until, at last, when the thing is in full swing, it cannot comprehend all that it is or will do. 

It used to be that my workplace could make me feel like this. Some urgent business or technical problem would require me to fire up more than just my brain and I'd have to employ my full professional faculties and drive. 

But now, it's really only the needs of my family that can do this.  Work has become just a component of that larger theme, just one ride in the circus. 

Today we had to visit the hematologist for my son. Maybe it was crossing the Hudson and bisecting the city of New York through rush hour traffic that brought up the lights in my eyes. Maybe it was the nurses and doctors instructing my wife and I about the procedures for my son and what role we would need to play in those procedures that started the cacophony of sound in my head. I know for certain that my son's discomfort and the visible discomfort of all those children around us put me in full gear. That and the need to parse every precious word from the doctor's lips sent me into the kind of unconscious awareness that I've only felt while driving at night on the highway in a snowstorm. I was ON ON ON. 

That state lasted for hours afterwards, into my delayed work day, and into every conversation. I took everyone I met today for that ride. I hope they understand.  

And it's hard to turn off. Even, if like the lights at a baseball field, you just cut the power, the clusters of high voltage bulbs continue to burn hot and bright for some time and don't yield to the dark and the quiet easily. I'm not ready for sleep and wont be for some time. 

I'm grateful that I start some time off from work tomorrow. I'll have the hours tonight while the kids sleep to clean the house and pack us up. Then there will be the long, long ride to our destination. I hope the kids and my wife can sleep for some of that ride. I long for long empty hours and the hum of the tires to bring me down from the heights I'm still drifting at tonight. I need a those few quiet hours that even the Jersey boardwalk gets at night in the summertime; when the neon sleeps and only the splash of light from the pale moon and breath of the wind off the sea visit the circus as she rests. 


Julie Steinberg said...

This is beautiful and completely captures today's events. I love you.

BLOOM - Parenting Kids With Disabilities said...

Hi David -- I've really enjoyed your posts on Motherlode, which sent me to your blog here, where I see more of the powerful images you use to convey the unique fears, challenges and joys of parenting a child with a disability (e.g. the intensity of lights at a carnival or baseball field to describe the hyper-vigilance of parents attending critical medical appointments).

I have a 15-year-old son, Ben, with a rare genetic condition called Langer-Giedion Syndrome. We learned over time that he had multiple disabilities, but what I didn't know in the early days was that my son's beautiful spirit and our bond would always be enough to carry us through, no matter what the future held.

In the early days, I remember thinking there could be no happy ending if my son couldn't do "a, b, or c" (speak, write, hear, grow like the other kids etc. etc.) It seemed like there would always be some way in which he wasn't "enough."

My thinking has changed so much over the years, and I recently wrote two pieces related to a concept I called The Enough House:

I produce a magazine on parenting children with disabilities and we have a related blog. It's at

I work at Bloorview Kids Rehab, a large children's rehab hospital in Toronto, and we see many kids with cerebral palsy.

Look forward to hearing more about your little boy -- the perfect warrier!

Cheers, Louise