This post is a little late as I intended for it though be posted in September because it was Charcot-Marie-Tooth disease awareness month. I didn’t want to bombard people with boring statistics about my disease. Instead I wanted to talk about one of the big things that I deal with being a person with CMT. One thing I wanted to showcase is that my life isn’t always easy. I do get CMT bad days as I call them. They are days when nothing seems to go right.
The scariest moment I have had as a mother happened to me when my son was around 9 months old, I’ll be honest that I can’t remember exactly how old my son was when this happened, but the day will be I gained in my memory for life. When my son was little I did a lot of running around the house because he was not an easy baby. I could never set him down for long before the screaming began.
On this particular day my son was acting up and I needed to get more diapers and wipes from his room in the basement. I laid him down in the living room in a spot where he couldn’t be hurt if he rolled over. I was thankful that he didn’t really like rolling over and wasn’t mobile. It was supposed to be a fast and easy task, but he had started screaming before I even set foot on the stairs. The next part is a blur. I panicked and moved too fast; the next thing I knew I was on the bottom of the stairs. We don’t even have just a single flight of stairs; we have a split set of stairs that I somehow slid down the stairs.
This was one of my CMT bad days.
When I tried to get up I just couldn’t. My whole body was in shock. I could barely feel my hands and feet. My legs wouldn’t hold any weight. Heck I couldn’t even sit on the ground because I was hurting so bad. I “crawled” which was actually me dragging my lower half across the floor 10 feet to get to my phone. I called a neighbor, but she wasn’t home. I was really starting to panic because my son was screaming at the top of his lungs and all I wanted to do was be there for him.
I turned back around and dragged myself up the stairs without letting my feet or ankles hit the stairs because that made me feel like I was going to black out. I can’t tell you how long it took me to get to my son, but I did it. I was bawling my eyes out as I picked him up. All I could do was hold him close to me. I felt like the worst mother. I had felt like I failed my son and it was all because of this stupid disease that I have.
In the moment I felt helpless holding my helpless son. It was in that moment that everything changed.
From that moment on I told myself that I was going to do everything in my power to keep myself safe and care for my son. I make sure that if I am feeling flustered or feel like my body is getting stressed out I take it easy and move slow to help prevent myself from letting my body get out of control. I struggle every day with caring for my son. Some days are easier and some are harder, but in general I manage every day.
Do you have any daily struggles that you live with?
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