Yesterday, I was looking at some baby pictures of my grandson Cole, and all of a sudden this feeling came over me. I didn’t recognize what it was at first, but then I realized it was a sense of feeling free, and I felt it with every fiber in my body. It was like I was transported back in time to a few years ago, a time before this horrible diagnosis first took over our lives. I remembered what it was like to look at my grandson and just enjoy him for him without that bittersweet feeling of loving him and fearing for him all commingled. And, unfortunately, this diagnosis didn’t come just once for our family, but came again when my second grandson, Jack was also diagnosed. It was also a time when my daughter and son-in-law were free of the worries and fears that came along with this diagnosis – free of doctor appointments, physical therapy appointments, medicines, night splints and the list goes on and on. It was a time when we didn’t wake up every morning and go to bed every night with this “monkey on our backs.” And this monkey has a name: Duchenne Muscular Dystrophy.
Don’t get me wrong, this diagnosis has not consumed our lives. There are still all the “normal” things that children and families do -- play dates and birthday parties, family vacations and Summers spent at the Jersey Shore, and just the daily routine of living your life as all families do, but that Monkey is always there. I continue to pray every single day, and although it’s only been a couple of years for our family, I am already so ready for the day when research will finally make that breakthrough we’ve all been waiting for, and when we can all get together with one collective punch and knock that monkey so far off our backs that he’ll be nothing but a distant memory.
Terry Porcaro (Cole and Jack’s Grandma)