Is life really predictable?

When I was a child I knew that when I grew up I wanted to take care of others. I knew I would be a nurse, pediatrician, or child psychiatrist. Isn't it funny how I ended up being ALL of those at one time since 2007. Besides becoming a nurse in 2004, I never would have thought that my life would be learning about all things DMD and mental health.

I also knew when I was young, I wanted to be a wife and a mom. I naively believed life would follow the predictable path that I wanted and that most people have. This was all changed when DMD entered our life in 2007. It was that day that all of my "predictable" life plans were thrown out the window.

Predicability is something that gives us comfort. It is a way to feel secure in our life and be able to plan with a reasonable idea what will happen next. When you are faced with Duchenne that is stripped away. Well at least the "normal predictability" that is there when you have children. The timeline and progression of Duchenne are predictable in a way but unfortunately it does not mean our new normal life is predictable. I hope that makes sense.

As I walk through this life with Wyatt and as I watch friends go through it with their children, I realize the differences in progression and symptoms actually removes the comfort of the predictable natural history time line of Duchenne. So many times we truly do not have control of what is going on in our life. We are bombarded daily with worry about what comes next...doctor appointments, results from tests, trial appointments, cancellations of trial, any kind of fall, wheelchair and accessibility issues, phone calls from school because of behaviors or accidents and the ever looming insurance approvals/denials for necessities are just a few of the things that ruin any kind of predicability we could have.

As we navigate this DMD life and its unpredictability, so much can suffer. You question if you can sustain relationships with people in your life because it becomes so overwhelming at times. It's hard to plan things when it always seems that something comes up which changes your best made plans. You question your own sanity sometimes because while managing everything you lose yourself. Please reach out to anyone who has been affected by a chronic diagnosis because it not only causes an acute sadness and hopelessness it actually is a chronic situation that is hard to navigate.