I took the dog to the vet today. She needed an allergy shot. For just a quick minute I thought, “if this is biggest thing I have to worry about today, I lead a pretty charmed life.”
Then I laughed thinking about how other people might react if they heard me say that out loud. I laughed as I remember the stress level I’ve maintained this week.
Duchenne is heavy and hard.
Results of what I consider to be a scientific breakthrough in the treatment of Duchenne Muscular Dystrophy were released this week. A promising new therapy is on the horizon! It is truly an answer to prayers. It makes me so happy and yet I’m grieving.
It has the potential to save Duchenne lives. I want my kids on that therapy.
My kids are already on another therapy. One that 10 years ago was a scientific breakthrough of its own. One I feel blessed to have access to and have fought hard for. It is helping; but it is not doing what this other therapy appears to be doing.
I feel panicked. I’m worried that because we already have access to the first, we may have put our boys in jeopardy of having to wait years to have access to the new therapy.
I know nothing for sure. I’m playing a game of life or death chess in my own head with limited amounts of information.
Next week I will spend several days in Arizona at a conference with the most influential people in Duchenne. There will be the leading scientists and doctors, industry representatives, and hundred of advocates and parents attending this conference.
This will be the place I will absorb enormous amounts of information, ask my questions, and form new ideas about the best way to care for my boys as they get older and as more therapies become available.
I’m scared I will not be brave enough.
I’m scared I will not be brave enough to make a decision.
Do we stay on the course we are on and risk losing access to new and better therapies? Do we stop what we are doing and try something new and risk losing all the benefit we are currently experiencing? Is there an in between? What if we choose wrong?
Will I be brave enough to make a decision and live with the consequences?
And I realize there are parents whom have lost their beloved children to Duchenne and never had access to any of it. To them, I must sound so damn spoiled. They would have done anything to be in my situation.
I haven’t slept. I think I feel an ulcer, or at least a huge knot in my stomach that is making eating very difficult.
So today, when the worst thing I was worrying about for a few moments was the dog’s allergy shot, life felt pretty charming.
But as I thought a little harder, scratched a little deeper…
the fact that I can forget for a few minutes,
the fact that I can celebrate a mundane task,
the fact that I have decisions to make about a disease that had no options 15 years ago…
There was magic in those few minutes. There was something very simple in that task. Magic and simplicity for a few minutes in a life too full of complicated and stress was really quite charming while it lasted.
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I LOVE YOU….SOMETIMES…I THINK, YOU….ARE ME