Are You Satisfied?

When your child is in clinical trials, you become an expert at filling out surveys. One survey that I dreaded every month for almost 2 years was a Duchenne parent survey. The questions were simple by design but deceptively difficult.

One of the typical questions I was asked was similar to this — Can my child participate in recreational outdoor activities with other children his age? It was a multiple-choice question with answers that ranged from “Yes, easily” to “No, not at all.”

Logically I can say that he can play with friends his age. But many things are difficult for him, while some are even impossible. I was surprised that they provided an answer to that. Easy enough. Right?

After a few pages though, I started feeling anxious. There were several pages of questions all related to how my son has difficulty functioning as a typical child would — everything from lifting books to getting out of bed to hiking. I got more distressed the further I read.

In all honesty, answering these questions forced me to really think of the physical ramifications of this disease. I had to transfer my fears, frustrations, and even jealousies to paper.

I started hoping there was a comment box at the end because I had plenty to say. I am aware that our situation isn’t the doctors, clinicians, or even pharmaceutical companies’ fault. In reality, most of them truly want to help find a cure. TJ’s situation is no one’s fault. I know that in my heart. But, AGGHH!!