I listen to the minutes on the clock tick, tick, tick by as I glance nervously at my phone repeatedly within a short amount of time. No amount of medication or relaxation activities can calm my fearful heart.
Waiting for a call that could be life changing is nerve-wracking.
We’ve been waiting on this phone call for quite some time, before we even realized it.
My sweet boy has struggled with some form of ailment with his muscles for quite some time. It started with tight muscles in his lower legs that caused him to stumble a lot. At first I didn’t think it was that big of a deal. I took him to two different doctors that seemed to think that it was something he would grow out of. He didn’t grow out of it. It wasn’t until we were seeing a new pediatrician that recognized Gabriel’s condition without prompting from us. He said Gabriel had a lot of red flags of muscular dystrophy and he would like to refer him to address his muscle issues.
Then, the doctors and therapists started telling us that he had weak arm and core muscles. Next came the notice that his hip muscles were weak as well.
He was being treated by an orthopedic surgeon that thought the best course of action was physical therapy and serial casting. He wore plaster casts from his toes to just below his knees for three months to address the tightness in his lower legs. Every month, they recasted his feet, and pointed his toes up further each time to stretch the muscle. While the casting addressed his lower leg muscles, it didn’t do anything for his hamstrings, his hips, or his core muscles. The problem only seemed to exacerbate after the casting. He started having pain in his feet while walking and his gait was a lot worse. We were told that these were problems he probably had all along, but over the course of time, he learned to compensate for his difficulties. Since there was such a major change in his lower legs, he would just need to tone up his muscles again.
He has had stomach issues for quite a few years. He complains of stomach pain almost every day and vomits frequently. He was referred to a gastroenterologist to address those issues. In the process of testing to figure out what was going on with him, we were informed that his liver enzymes were elevated. He has a scan coming up to check his liver and he had some additional blood work done.
The words muscular dystrophy popped up in our lives again. This time, the gastroenterologist did blood work to see if his elevated liver enzymes are related to muscular dystrophy.
The anticipation has caused anxiety I don’t know how to deal with. There is a lot of work to be done in regards to his muscles, with or without muscular dystrophy. There is a lot of work to be done with his diet, with physical activity, with lifestyle changes.
I’ve always said there isn’t anything I wouldn’t do for my children. I’m here, at a crossroads, ready to make major changes because it’s necessary.
When I was diagnosed with bipolar disorder just a few short months ago, I didn’t think about all of the different factors that could/would play into my swinging moods. Some days feel like grasping onto a rope, dangling off the side of a mountain, with little strength to do so.
But we’re here. ❤