My name is Kirsten Parisi and I am the mom to two amazing boys, Caeden and Devin, who are fighting Duchenne muscular dystrophy (DMD). Our family, including my husband Mark, have been fighting against DMD since our two boys were diagnosed in 2013.
“I can’t even imagine what it’s like.” I’ve heard this same comment many times from family, friends, colleagues and strangers. They are talking about how we deal with our two boys and their progressive, rare, genetic disorder.
My response usually is “Well, you just do it, because they are your kids.”
The truth is I do it out of pure love and the instinctive ‘momma bear’ in me to do everything I can for them. Honestly it takes a toll on you and it is so damn hard on so many levels: mentally, physically, and socially. We began this fight against DMD in July 2013 when our, at the time, 7-year-old son, Caeden was diagnosed with DMD. We were beyond devastated. There were a lot of tears, uncertainty, no cure and therefore, no hope.
Several weeks later, Caeden’s then 4-year old brother, Devin, was tested and we were hit with another blow: Devin was diagnosed with Duchenne muscular dystrophy as well. We were not even able to process the diagnosis for Caeden when we had to digest the same diagnosis for Devin. There were so many emotions since our only two children were both diagnosed with such a devastating diagnosis. All your hopes and dreams you had as a family, for your children, and for yourself were gone. Those were some of the darkest days we have ever experienced and I will unfortunately remember the details of those days for the rest of my life.
The coping did not come easy and it was something I needed to learn in order to take myself out of my depression and devastation. I find things to give me focus and push those negative thoughts that creep in, from time to time, to the back of my mind so I can see the joy around me. My boys are still the same boys they were before the diagnosis and they need me to find comfort. They are my world but I am theirs. I have discovered that by making them happy and by providing them with as normal a life as possible, I can be happy too.
We’ve learned that we are blessed to be the parents of two loving, funny, smart, inquisitive, and thoughtful boys. They have taught us to cherish every day, never give up, and the value of trying to make a difference, small and big.
So, for those that have asked; maybe now you can imagine.