As hurricane season arrives here in the south it seems like we are always watching and waiting for the next storm. We watch the news and plan our days around what could happen, not knowing if it will be us or our neighbors who get the worst of it. This week we heard about a possible storm that sat in the Gulf of Mexico for most of the week and then started to take shape on Friday. We changed our plans for Father’s Day because of it, just in case we were the ones who were in the path this time. When I woke up Saturday I realized that we just had some rain, which our plants needed anyway, but others had flooding. I was thankful that we were safe but I felt badly for those affected by it. This had me thinking about our “life storm” and how I feel like I am always waiting for the next warning to come.
Like I said last week, behind the scenes we are worrying about the future and watching for warning signs of progression. The Duchenne diagnosis comes not only with worry about non-ambulation but also heart and lung deterioration. So annually, as I schedule the tests to watch and monitor for progression the anxiety builds. Especially since two years ago he was diagnosed with scar tissue in his heart and his heart function is the lowest of normal range. I can remember that call like it was yesterday. I was in the barber shop with Wyatt when his cardiologist called with the results of his MRI and to say the least I was not prepared at all. I didn’t see any of the warning signs and I was not ready for the storm. I can remember holding back my tears and my urge to vomit while I waited for Wyatt to be finished. Though I always knew his heart could be affected,I was totally caught off guard that day. It was just a matter of time, but I guess I never thought it would be my son. I have friends whose boys are older than Wyatt and their sons don’t have any cardiac involvement so I just hadn’t prepared myself for the diagnosis. After that phone call and visit to the DMD cardiac specialist we started Wyatt on multiple cardiac meds to help keep his heart function and scar tissue stay as stable as possible. Since that time I have tried to prepare myself every year for the results of the next test but you can never truly be prepared.
Just as we have sat in the storm’s cone of uncertainty in Louisiana (so many times last year) I feel like I am always sitting in the Duchenne cone of uncertainty. Every year as I schedule all of Wyatt’s annual visits I try to prepare my brain and heart for the possible change and progression of this diagnosis. So right now we are in preparation mode. We get all of the annual tests done during the summer in order to have the results for when we go to Ohio in late August/September. So as you can imagine I am preparing myself now as much as I can. I can feel the anxiety building with every appointment I schedule. I know he has progressed physically so much this year, he struggles so much to get off the floor that he no longer tries to get down there. But it’s what I can’t see that is the cause of the stress. So as our storm season continues please think of our family living with a progressive diagnosis as we are always in storm preparation mode.
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