told you this yet, but you will have to fight for everything."
The doctor, a specialist in cerebral palsy that we'd finally
found for our daughter Cody after two years of searching,
looked my husband and me in the eye as he said this.
job on top of any work done outside the home, and
in addition to the care given the child and any siblings
at home. That third job is fighting for the services and
resources the child needs. One example: my daughter's
last piece of equipment, a gait trainer, took eleven months
ELEVEN MONTHS to arrive. Her therapists ordered
it because the borrowed gait trainer she was using was
not supporting her little body properly for her to develop
sound muscles and joints.
that did not serve her rehabilitation, while paper shuffled
across endless desks. Denials were received, recorded,
and appealed; justifications written, processed, and
responded to. Meanwhile, I called, I emailed, and
I followed up. I supplied information, and I did it all
over again.
needs we endured eleven months of waiting.
a loving parent, in a constant state of war. And all too
often, as with the delayed gait trainer, there is no target
for a parent's rage, frustration, and despair.
fraught with baggage lifted from my culture, my gender
role, my personality, my family, my spiritual tradition. I
am not geared to fight without substantial pain and cost
to myself.
right: the fight is never going to change. Therefore, I was
going to have to find a way to live a healthy, peaceful
my child's welfare. And I began to think about how to
manage, not just my child's needs, but my own. My own
need for peace in the midst of these battles.
feel overwhelmed, I give myself a set "time off" an hour,
a day, or a week of not calling, emailing, or otherwise
contacting anyone taking care of Cody in any capacity. I
put down the reins quite deliberately and let things steer
themselves for a while. Nothing changes while I'm gone,
and I feel more able to deal with it when I go back into it.
can take. I discovered this strategy last spring when I
felt powerless in the face of months of stonewalling I
was encountering with an agency's reductions in Cody's
services. So I wrote a detailed, carefully-worded, explicit
letter to the agency, and I copied the letter to three
outside parties who potentially had an interest in the
matter. Immediately, I felt my emotions turn around. I was
now power-FULL. I had stepped over the hurdle I was
encountering. I didn't resolve the problem, but I did take
charge of my role in it. And that was enough to change
my state of mind.
from the fight. Sometimes I want to hold on to my anger,
rage, despair, self-pity, impotence. I feel entitled to sulk.
I want to claim my right to rail and rant. Maybe that's
how I got attention when I was younger oh, poor me.
Or maybe that's how I let myself off the hook -- because
it's just one more hard thing to do on an overflowing list,
trying to figure out a creative way around the obstacle
I'm currently beating my head against. To find my way
back to a still center.
learning that lesson, again each time.
peace. I'm learning to fight and keep a peaceful heart in
the midst of the battles.