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.
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).