Optimistic. A word that could never before be twinned with DMD.
I remember when my son Callum was first diagnosed, the pediatrician actually said to Paul and me, ‘this is the best time to be diagnosed.’ And I remember thinking, ‘what the heck are you talking about?????’ Of course she had just explained to us what Callum’s future would be, all our hopes and dreams for him would never be realized, and here was this seemingly crazy woman telling us it was ok? How could it be? How would our lives ever be the same again? Our world had just came crashing down around us and she hadn’t a clue.
But looking back, she had something that we didn’t… OPTIMISM. We were told all about support groups; people who were going through the same things as us. At the time, I wasn’t interested. I felt that no one could hurt as much as we did right now. No one understood what we were dealing with. Other people wouldn’t have to explain this cruel condition to my son. WE would. It broke my heart and I certainly didn’t want to talk to others to hear how Callum’s life would be. I couldn’t face that reality. I wanted to wrap Callum up and I felt that if I just held him tight as a mother would with any sick child, then he would be alright.
That’s what hurt the most was that I couldn’t take this bad thing away from him. I’m his mother, I’m supposed to make him all better when he’s sad or ill. It wasn’t fair. None of this was fair. But I had to get educated on his condition because I would always be his primary caregiver. He needed me to be strong so he in turn could grow up to be a strong-minded person because he sure would need to be.
And so, it took me a while to connect with other DMD moms and boys/men with Duchenne, but once I did, I came into contact with some amazing people with such great outlooks on the condition. People like Anthony and Jon Hastie here in the UK. Men who haven’t just laid back and let Duchenne take over their lives. Men who LIVE life. And men who are an inspiration to other families as well as my own. That’s what makes optimism such a great word. Because now I understand what the pediatrician meant. That there is hope – more so now than ever before – and I genuinely believe that there is a cure for Duchenne, it’s just undiscovered.
And I hope many others will now also use
the word OPTIMISM with hope and a smile.
Have you been told something crazy you later learned from? Comment below to answer.