Why I’m Grateful This Thanksgiving as a Duchenne Mom
Life with DMD can be tough, but there's still much to be thankful for
While I love Christmas, I’m a Thanksgiving girl, too.
Decorating for Christmas is one of my favorite things ever. I usually go shopping for vintage Christmas decorations and get at least one tree up before Thanksgiving. But I won’t get serious until we put the last leftovers from our turkey dinner into Tupperware containers and pack them away for lunches.
I love reflecting on what I’m grateful for during November by posting something on social media every day of the month. I was never like this before Duchenne muscular dystrophy (DMD). In many ways, the constant losses my family experiences due to the progressive nature of DMD make me more thankful for the things we have.
In the spirit of Thanksgiving, the following are the things I’m most grateful for this year.
1. My three sons with DMD, Max, Rowen, and Charlie, have remained in good health this year, despite their disease. I will never take that for granted and pray it will last for many years. In addition, the rest of our family is healthy, too.
2. While Duchenne can put stress on a marriage, mine remains intact. My husband, Jason, and I have had our share of ups and downs, but we are still together. We are best friends and we smile more together. He makes my heart smile.
3. This one isn’t as black-and-white as the other things on my list. After my sons were diagnosed with DMD, our number of close friends diminished rapidly. For years, I thought it was because our former friends had changed, but over time, I’ve realized it was us. Our lives were flipped upside down. We were plucked up and placed in a different world, heading in another direction. We changed.
So I am thankful for two reasons. First, I’m glad I came to this realization, as it helped me let go of resentment. Second, I’m very thankful for the friends we now have — the ones who are still here and love us where we are, and the new ones we’ve made in this world of rare diseases.
4. Our home is accessible and big enough to safely house our party of nine. It keeps us warm when it’s cold, and cool when it’s hot. Our home is a place where we can celebrate and grieve, welcome friends and family, and make a lifetime of memories.
5. We are blessed to have an accessible van that can hold three power chairs and our family. The vehicle takes us to school, work, church, and countless medical appointments. I love our van.
6. From the beginning, we have been blessed to receive good healthcare — first at Cincinnati Children’s Hospital Medical Center and then a little closer to home at Children’s Hospital Colorado. Beyond that, we have an excellent team of local providers who give our family extra support and quality care.
It’s good that I’m given a word limit for these columns because I could go on and on!
Sometimes, in trying to share Duchenne with the world, I focus on the hard things because I want others to understand that living with DMD is hard. I don’t want others to see my positive attitude and think Duchenne isn’t that bad — because it is. In the end, it more than threatens; it promises to steal almost half my family from me.
But I also want others to know that we still have a good and happy life. And if that’s the case even with all the difficulties that DMD presents, we have many reasons to be thankful.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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