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)

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Comment by Rhiannon Traigle on October 30, 2008 at 11:36pm
It's funny that I read this tonight! Recently I have been experiencing feeling 'odd' at times. I've noticed that when I watch movies or am consumed with something that distracts my mind that I feel this sense of freedom so to speak. I actually stopped last night and thought about what I was experiencing and feeling and it occured to me that I must walk around with this 'monkey on my back' you are talking about. I realized that since my son's diagnosis that I have felt that the future has now been 'determined' for us...there were no more 'what if's' or that free sense of what the future might be. It is like the excitement and wonder of infinate possibilites has been stolen and I have the unfortuate ability to see all of life's trials before me. I have been reminding myself all day today that I am indeed NOT psychic and nor am I God, therefore I cannot possibily KNOW what is in store for my family or son. I want each day to be like Christmas, a true surprise and filled with joy and excitement. And, I had to realize that I am making the choice to let this monkey hang on...but I'm fighting hard to make him let go!! Thanks for sharing this!!! You described exactly what I've been going through and I am again thankful for having people to connect with that truly understand!
Comment by donna on October 28, 2008 at 12:12pm
I have had simular feelings but i have discribed it as there being a Elephant in the Room. Its there, it isnt' going away, no one wants to think about it, or acknowledge it, we all hope it will just go away. But in the mean time we try to ignore it, and go on with our life trying to be as normal as we can with a so called elephant in the room.

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