My Journey My Reflections

On January 24th, 2014, at 10:24pm, my son Michael lost his battle with Duchenne’s Muscular Dystrophy,

Michael was always such a happy child despite having this condition. His smile lit up a room and then some. I knew the end would come but never knew just how it would happen. When you get told that your child is terminal I stayed in the moment and I had to force myself to do that each and every day. I didn’t want to look forward because that scared me. If I looked too far, I knew what the end was for him. This ending should not be at such a young age you know. The doctor said it could be between the ages of 14-26. You always hope the doctors are wrong. You want your child to be the exception. When you just only know the outcome and no other information it makes your mind wonder. Part of me didn’t want to know and the other part did. I was coping with the knowing, and the condition itself. This was pure torture that tormented me over and over. I had to make sure it did not consume me because, it would have destroyed what hope I had left. In addition, it would have destroyed Michael’s too. We lived each day and tried to not think too far ahead. We enjoyed each day we had with Michael. I didn’t want to know or think about the end and how, when and where. In, the last year of his life–he had two close calls where you are at the hospital and they call the Chaplin. It was like, is this the end? Code blue being called at the hospital and all the parents looking on as their child is right there in ICU and it could be their child. But Michael recovered both times. We got a little more time with him. It bought us another year. We went the way he wanted, at home where there was a lot of love. I remember the days leading up to it because it was bitter cold, so now the bitter cold reminds me of Michael and his last days. He entered the world on a summer and left this world on a cold winter day. I found him, and that feeling of coldness just stays with you. His younger sister was present and was heartbroken. Those moments for both of us will always be remembered. These moments created a bond where a terrible loss occurred. A moment where there was immense pain of loss. I felt at that moment that something was taken from us. They took Michale from me. I felt hit by a sledgehammer and my world was crushed. There are five stages of death, and the first seemed to be the most difficult, acceptance. I just had a hard time with this one. maybe because we had just talked that night, but he seemed different. Maybe it was the cold, or maybe he started to lose his fight and was giving up. But my Michael was gone. It has been 12 years today. Not a day goes by that I don’t think about his. I wrote and published his story. One day I hope for it to be a movie because it is unique story, of love, hope, and reflections of life of a little boy named Michael. Coping with this loss has been a work in progress and I don’t know if any mother who suffered a child loss ever gets over it.