In the past month, it’s been a struggle to find subjects that I would like to blog about.
My resolution to walk at least 10,000 steps every day has been fairly
easy to keep but not necessarily in any exciting way. Hiking to the
top of Gray’s Peak in Colorado is my idea of exciting. Doing laps from
the laundry room through the kitchen around the living room to the end
of my son’s bedroom and back again? It’s just kinda sad, but that has
been my fate with some of the below zero weather that we’ve had lately,
along with my full-time caregiver status during Justin’s Christmas break
from school.
The highlight was our January 1st hike at Gibraltar Rock, promoted by the local Ice Age Trail Chapter.
About a dozen people participated, despite temperatures hovering around
zero. Julia and I left ahead of the group that was shivering in the
main parking lot and hiked to the top and then down to the west parking
lot. We returned to the top where the main group was gathered. Cups of
hot chocolate were offered by the organizers for those hikers braving
the elements. The winter views were a bonus.
Today,
the weather popped up into the upper 40’s (with rain) before diving
down into the single digits. Below zero weather returns on Saturday.
This is winter life in Wisconsin.
Yesterday, I spent the day with my son at the University of Wisconsin
Children’s Hospital. Annually, he goes in to see specialists for
Duchenne’s muscular dystrophy. It was not a particularly good day.
Based upon his significant loss of function during the last year, I had a
pretty good idea what was coming, but Justin did not. It’s a heckuva
thing for a 17-year-old to accept. Justin gets down at times, but is
probably the most resilient person I know, given his circumstances.
Duchenne’s muscular dystrophy is a neuromuscular genetic disease that
weakens the big muscles first (legs and then arms). Often, it runs in
families, but not always. It can spontaneously occur without genetic
history. In Justin’s case, he was adopted from South Korea so he
doesn’t have the benefit of family medical records Through early
detection by the UW doctors, Justin began prednisone treatments much
earlier than most kids with his diagnosis. That has delayed the
progression of the disease. Delayed but not denied.
Justin stopped all walking at 15 and lost his ability to stand with
help last summer. He has also lost much of his arm/shoulder function.
We knew all that, but yesterday’s tests told us that his lungs have
weakened considerably during the past 12 months. His echo cardiogram
looked good, but the cardiologist sent him home with a 24 hour heart
monitor and plans for a heart MRI this summer before he heads to
college. The heart is a muscle too.
This
is a bridge year for me, transitioning from Justin’s primary caregiver
to his Dad again, as he heads off for college in July for a month and
then again in the fall for the full semester, majoring in social work.
He won’t be the first kid with Duchenne’s to get a college degree, but
there aren’t many. If you don’t dream big, it won’t happen.
Tomorrow, I drive to Chicago to pick up my daughter Allie who is
returning from a semester’s study in China and a month’s vacation in
Thailand. I’m pretty excited to have her home for a week or so before
she heads back to college at UW-Milwaukee.
Tomorrow night, we’re getting together with two other couples for a
trip to Vintage Brewing’s new place in Sauk City. We’ve been looking
forward to this opening for a while. I like Vintage’s beers, and the
location overlooking the Wisconsin River is amazing. Plus, it’s much
closer to us than Vintage in Madison. It’s my birthday weekend, so that
will make the brews taste that much sweeter (excepting IPA’s).
Comments