Three years ago, my two sons were diagnosed with Duchenne. I didn’t even know what it was before the doctor mentioned it as a possibility. Then came the official call letting us know that our lives would never be the same. It felt like we were thrown into a raging unfamiliar sea with no idea how to swim. Drowning in emotions, grief, and paperwork, we struggled to adjust to our new life. We were being asked to make decisions about things we knew nothing about. It was overwhelming, to say the least.
Should we start steroids? Should we move to a one-story home or install a stairlift? Should we do physical therapy at home or seek out a professional? Are we eligible for any trials or new medications? When do we need to start the process of getting equipment, wheelchairs, transportation, and making renovations? The list went on and on in my mind causing me to live in a constant state of anxiety. I was not very decisive before Duchenne, and now it felt like each decision carried the weight of the world. I was no longer a parent; I was a Duchenne parent with two amazing children who were counting on me to fight for them. I just had no idea how to do that yet.
As the months passed, I quickly learned that my way of dealing with the anxiety of making such important decisions was to obsessively learn everything I could. I became obsessed with researching all aspects of Duchenne. I looked into supplements, exercises, exon skipping, and clinical trials. I dove in headfirst until I had binders full of information and cabinets full of vitamins. It was no way to live, but it was the only way I knew how to fight for my boys.
Years later, I still rely on my trusty binders. Thankfully, my cabinet full of medications and vitamins is much more manageable. I have simplified things a bit to stay sane. So much has changed since the diagnosis that it’s hard to even remember our life before Duchenne. We decided to move to a one-story home and have even renovated it with built-in ramps and a completely accessible bathroom. Both boys now have power chairs and all the equipment they need. Thanks to God and help from our amazing friends and family, we were able to purchase a mobility van that perfectly accommodates our family. We even started homeschooling all three of our children to make life easier for all of us. Nothing is the same.
Shortly after the diagnosis, we were offered a few trials that we researched extensively, but ultimately turned down. It was scary, and we prayed we were making the right decision. Soon after we declined, each trial we were offered got canceled, so we felt confident that we chose wisely. Then we began to research the trials we were interested in, but the waiting lists were long, and our boys were edging closer and closer to the age cut-off.
We started steroids a few months after the diagnosis, but after severe side effects from two different kinds of medications, we made the very difficult decision to take our boys off of steroids altogether. While this brought so much joy back into our home, it unfortunately also took us out of the running for the trials we were interested in. Difficult decisions seemed to be the only constant in our lives, and they never seemed to get any easier.
Looking back, that was definitely the right decision for our family, and we are all happier without harsh side effects controlling our lives. The boys were very much involved in that decision, and while some will not agree with our choice, it was the right decision for us. As my son so wisely said during our MANY conversations about it, “I’d rather be happy in my chair than miserable and walking.” Sadly, about a year later, at just ten years old, our oldest son lost mobility. It was a difficult time for all of us, but thankfully he adjusted to the transition courageously, and we were able to follow his lead.
I think the biggest lesson we’ve learned about decisions is that there is no one size fits all answer in the world of rare disease. What works for some families may not work for others. I know many people who think we are foolish for making some of the decisions we’ve made, while others stand behind us wholeheartedly.
I used to think that fighting for my boys meant fighting against the disease itself, but I’ve since realized that my goal is not to battle Duchenne; it’s to fight for my boys. Now, my goal is to fight for what they want, to fight for what’s best for them, and to unconditionally be by their side through it all. My boys have taught me how to be brave, courageous, and positive throughout this journey because that’s how they handle their disease every single day.
Helen Keller once said, “Life is a succession of lessons which must be lived to be understood.” I believe the same is true of our decisions. It’s only through experience that we gain the confidence we need to make difficult choices.
Unless you’ve lived in the world of Duchenne, you can never truly understand the weight of each decision we are forced to make. Only those who have walked a mile in our shoes can understand what it feels like. Sometimes our choices will end up as lessons forcing us to take a different path, and other times our decisions will be just right for us. The only thing we can do is pray for guidance, follow our instincts, hope in the future, and keep fighting for our children with everything we’ve got.