Wednesday, September 2, 2009

Getting There

We had an appointment with my son’s Neurologist this morning. We didn’t expect (and did not receive) any surprises on this visit. It was a checkup; situation normal.  

Maybe it’s because I was less afraid of the trip, less distracted, that i had time to consider just how much work getting there is in itself. Sort of like the difference between running from a bear and just running (no bear) - it’s less scary but still tiring.

And while we try to share the work, it’s my wife who’s taken the lead in the coordinating these days for us. She’s the one to schedule, to plan, to reach out for help and to keep all the events lined up.  For all intents and purposes, she is our case worker; In my opinion she’s underpaid.

My job is to get us there. Though more tactical than my wife’s planning, the transport itself is is not a small job either. Traveling by car from Hoboken to the east side of New York is a little like trying to push cooked spaghetti across the kitchen floor with your finger - you can do it, but you got to be focussed and patient (and hope the spaghetti strand doesn’t snap along the way). 

Sometimes I think that of all the stresses that affect us on these days, getting there feels the worst.

“Oh no!” my wife said shortly after we’d started, “We don’t have the red folder.”

This is the folder with all my son’s medical records. My wife has been very diligent to keep every evaluation or test for my son ordered and stored in this folder. 

“Will we need anything from it today?” I asked hopefully. 

“Hope not,” she said a little crossly, and then taking a deep breath (a deliberate yoga like breath), added more calmly, “Just go. We’ll be late otherwise.”  

I was glad she’d made that choice. I could have turned back, but it would have made the trip more stressful.  There are so many places where things can go wrong. 

Crossing into Manhattan from New Jersey is such a complex traffic equation. There are so many people going to the city for their own reasons:  delivery trucks, utility vehicles, city cars, passenger cars, taxis, busses, scooters and pedestrians, And we’re all looking for that elusive clear path - it doesn’t exist. It’s possible to get caught up almost anywhere and there’s just no knowing what will happen. 

To me this difficult crossing has also become a very concrete metaphor for how we manage our son’s many medical needs. We’re just taking it turn by turn - not really knowing what will come up to affect the outcome. And this suspense can often ignite our already tension fueled feelings. It’s easy to fight. It’s hard to stay calm - it takes an effort. 

Today the trip was spent mostly in silence. My son slept. My wife (I think) was very gallantly trying not to question my choice of route. I was grateful. 

I drove and counted the blocks and measured them against the clock on the dashboard and tried not to look or sound nervous. When we were about ten blocks from our destination I knew we’d make the appointment on time and I started to breathe again. 

“Worst come to worse, we could walk it from here,” I thought and accidentally said it aloud. My wife looked up at me and smiled nervously and we completed the trip in time to meet the doctor. 

“11:30 a.m. appointment for Sexton,” my wife said to the receptionist with about five minutes to spare. I was so worn out, I wanted to ask if there was a room we could lie down in. 

The appointment was gratefully, as I mentioned above, routine. We’re on track; we’ve got more to do, but he little guy is doing fine. 

Afterwards, we took lunch at a nearby diner to calm our nerves. We had hot soup and sandwiches and my son shared off our plates and sipped his milk. We looked up occasionally over the noise and the chatter of the cafe to check in on the other. There were a lot of sighs. Each bite, sip and breath felt like a step in the descent from a hill we’d hiked up. The appointment was over - we could breathe again. 

It’s nice when the trip home is a relief. It’s not always like this. Today was good though. We stopped the car near my office and my wife drove the remainder of the trip home with our son. I took the subway home tonight.

It will be a little while before we have to do this again. I’m glad. I don’t know if we’ll ever get over the difficulties of arranging a day like this. I suppose it’s possible. 

I’m hoping all the time for a day when we won’t have to go as much. I’d love it if someday my trips to the city were reserved for a date with my wife on Friday or Saturday night. I’d love to turn the stress of a doctor’s visit into anticipation of a movie or even a show. But for now, we’ve got a little break and I suppose it’s enough. A few weeks at least to not have to worry about getting there. 


BLOOM - Parenting Kids With Disabilities said...

Hi David: I'm enjoying your blog. Are you British? I know you live in New Jersey, but whenever I read your posts I feel like I'm reading something written by someone British.
Perhaps it's some of the imagery and language you use.

The images you use to convey how you feel (e.g. Mean Days) are brilliant. How do you come up with those analogies?

I'm glad your trip to the neurologist was relatively uneventful. Hope you'll fill us in on what you decide re the hematologist and need for repeated tests.

One day we would love you to do a guest blog for BLOOM.

Best wishes, Louise

David Sexton said...

Hi Louise,
Thank you. I'm actually from the Boston area. I've read a lot of English lit and 19th Century American writing over the years though and suspect that some of those authors have left their imprint on my writing - it's hard not to emulate what you admire.

I'm glad you're enjoying the posts.

I've been checking in on the blog for BLOOM as well and really like it. I'd be honored to write something - it's such a wonderful site.