hello all
posted 1st Oct
I'm Hayley. I'm not sure if this belongs here but I'm disabled and a first time mom. I have a neuro muscular condition called Charcot-Marie Tooth disease, which was passed from my mother. I have 4 brothers and one of them also has it. I wear plastic orthosis' on both legs from the ankle to below the knee. I've had 2 major surgeries when I was younger to try and correct some of the problems. CMT causes muscles to weaken and waste over time. Basically, I've become so dependent on the braces, I can barely walk without them. It hurts a lot, either way.
When I got pregnant unexpectedly I was in shock. There were many doubts in my mind about whether or not I'd manage. Thankfully my partner was supportive and we knew exactly what we were in for. We had a beautiful baby daughter and she seems very healthy. Due to the degenerative nature and adolescent onset of this disease it is difficult to determine yet if she has it. It is not a life threatening disease so I'm not overly concerned, but it was hard for me growing up with it and still remains a challenge.
Unfortunately, pregnancy has exacerbated the illness and I'm in quite a lot of pain by the end of the day, and sometimes I get so frustrated with my body. I have set backs over certain things like lifting her or carrying her in the car seat, but my partner helps me a lot with those things.
I'm grateful I had such a positive labour, although I did have some intervention with my waters being artificially broken and opting for an epidural (the contractions went from 5 mins to 2 mins apart after they broke my water, and the nitrous tank was empty lol. I needed relief.) After pushing for one hour my girl had arrived. I've never felt true love until I held her in my arms.
I live in a small town with few friends. So I guess I'm looking for some encouragement and extra support. I feel good about getting all of this out. It's as if a weight has been lifted.
If you have any questions feel free to ask.
Xo
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