Mental health in Duchenne is a real thing. From the day of diagnosis, parents are traumatized by the words Duchenne muscular dystrophy and mental health isn't even a thought. You and your child start the routine of different types of doctor visits and testing and then possibly a clinical trial where they become a guinea pig, poked and prodded weekly.
We as Duchenne parents deal with mental health on all levels and it’s so challenging, but “making every second count” and “live just for today” has been helpful for me. It’s scary knowing what Duchenne can do, but to dwell on it isn’t good for anyone so I keep my faith and thank God for the good days. Of course, that’s easier said than done, but I’ve managed to do this.
Taking the time for yourself and making friendships with people in your Duchenne world is one of the best ways to make you feel better. You feel alone after diagnosis and you should never feel alone. I try not to focus on the disease and how it can break me down mentally. I choose to focus on what I can do and what makes my son happy. My son’s actually really simple. I’m the one that wants us to do everything. I love being with my kids and we travel a lot being that my husband and I have 5 other kids all over the US. I make it a fun job for my son and I to explore the hotels in the areas we will be staying at and what they have for us to do there as a family. We also look at what’s in close proximity, what we can walk to, what restaurants they have and most importantly their accessibility (the biggest stress of our traveling).
That’s a huge part for our kids, they foresee roadblocks and challenges while traveling and it scares them giving them high anxiety. As the parent, I pray I planned it out right or I’m going to have a nervous breakdown. People always say to us “we only sleep at the hotel”, but we aren’t regular people and we like to take it slow. Relaxing and being stress free is assuring to my son and myself that we will be those regular fun vacation people and come home with a smile of wow, we went and we did.
Since I have started this journey a lot of the heartache and pain I have felt has been overwhelming at times. I am just a mom. The way I handle most of my mental health in Duchenne is by helping others in this disease from newly diagnosed to international to anyone that asks for assistance. I believe in leaving this world, especially the rare disease and disability community, better than I found it. So I encourage families to seek out therapy, support groups, and Duchenne organizations to make you feel more supported on this journey. There is so much support out there and the first step is asking for it, and once you have it you have the world.