The last few months have been a roller coaster. Nicholas chose to go to Walt Disney World for his Make-A-Wish Trip, Duchenne was not invited on this trip and it was stress free! Nicholas had an episode on the airplane that looked like a full body muscle spasm/cramp and he seemed unaware of his surroundings when we landed. He is now being referred over for an EEG since this is not the first time this has happened. I am praying that we do not have more shoved onto our already full plate. Our summer has been non-stop and clinic has been every week along with our never ending therapy. We have been camping almost every weekend and recently this last weekend we had a nice long weekend at the lake with my side of the family.
This Sunday evening when we got home, we all crashed out from being so exhausted. I woke up in the middle of the night, sitting up as fast as I could, couldn't breathe and was crying. I got a cup of Almond Milk and sat down trying to re-visit what my Nightmare was about and WHY I was so disturbed. So Here is what I recalled...
I was on an Island where my husband met me on the beach where we were walking and holding hands. My family was dancing and laughing and soon all my friends joined them, but we (my husband and I) were on the shore line, which seemed to be perfect and we weren't getting wet. Soon I see my son in the water with water wings on, the cheap kind that can pop at any minute. He was floating under glass in the ocean. He was laughing and smiling and having a good time but I couldn't help him through the glass. No one could see that the glass was keeping him in the water and that the water wings were going to pop, just wasn't sure when they would pop. Everyone around me was him having a good time, but they didn't see the glass or the thinning water wings. I was desperately trying to get the glass up or break it before they popped or he drowned. I looked in the distance and I saw all of my Duchenne Family throwing fishing lines with large weights on them into the water. The weights were only breaking some of the glass where I saw some boys, but not mine being saved.
Later in the morning I realized that the Glass was Duchenne, the weights were drugs that were specific to deletions. This has been on my mind more than I knew it. I am so beyond scared that my son wont get a therapy in his time. He doesn't qualify for any drug trials due to either his age, behavior or that he has other genetic diagnosis. I know we are not alone, I know that other families are waiting like us, BUT it doesnt make the pain and fear go away any less or more. Its pain and fear non-the-less and no matter what anyone says of does, its there until I am told a CURE is found.
