Yesterday was one of our 2 checkups with our doctors for our son. The big news was…. No news.
So why am I writing about it? It is the only news that a parent of or a person with BMD or DMD wants to hear. Nothing has changed. You look fine. I cried by myself in my car for twenty minutes. For those who don’t know me. I am not a notorious crier. Quite the opposite, in fact I was once accused of having my tear ducts removed.
This news was all I could’ve hoped for.
I started thinking about the appointment almost daily two weeks before it happened. I thought about how I would handle bad news, how I would handle good news. What I would say to Jack, the conversation I would have with my wife after the news, every single possible outcome. When it was nothing new... I cried.
This is our life, and it is why I fight with my family, friends and all of you. Every day you look for a change, or something that indicates the disease has progressed. Every day you pray today is not the day that something bad happens.
Unless we find a cure, we will never spike the ball in the endzone, we will never go to an appointment with my son where I don’t fear what will be said.
I have had several very close family members who have fought and survived cancer, and they all talk about the same thing. The once or twice a year appointment where they get the news: Their scan is clean. Everything is….fine. No new news.
I didn’t realize I didn’t understand this, until now. It is the mundane knowledge of he is ok, that had now brought me more joy than any other news I can hear, except one day the words… we found a cure.
When that happens… I will cry one more time and then hopefully never again.