Mom Guilt is Worsened by CMT

Mom Guilt is Worsened by CMT

Mom guilt will always get you.

Why do I feel guilty when I cannot do something or be somewhere for my son? It’s probably because society has this ideal for moms. We are expected to be everywhere and do everything. Social media sites like Pinterest can add to that idea. Don’t get me wrong — I love Pinterest, especially for dinner recipes, but I also know it can lead to unreal expectations of me as a mom. And that adds to the mom guilt.

Mom guilt is often intensified by the fact that I have Charcot-Marie-Tooth and there are certain things I just cannot do. I try to do everything — within reason — with my son and be there to support him. CMT often causes fatigue, which never comes at a convenient time. I often have to say “no” because I am too tired to go wherever or do whatever he wants. That is when the mom guilt kicks in. I feel bad that I can’t do things, even though he says it is OK. I wonder if, deep down, it really is OK.

Living with a disability is not always easy on the parent or the child. I often feel guilty because I passed this on to my son and because I cannot do everything other moms do. Sometimes when hearing what friends do with their children I feel guilty that I cannot do the same. My son is good about a lot of things. He does a lot around the house: vacuuming, taking out the trash, cleaning the table. He does his own laundry and helps unload the car. That also brings on the guilt.

I am young enough that I should be able to do those things, but due to CMT, I can’t. I often feel bad that I cannot be the “perfect” mom. On nights I am too tired to cook dinner, we eat leftovers or something easy to prepare. Thankfully, my son is OK with scrambled eggs and toast for dinner. I try not feel bad about things like that, but sometimes it is hard.

Mom guilt is tough. I know that having a disability makes it worse in some ways. I also know that my son loves me, and in the end, some things won’t even matter. He won’t care that I didn’t make 25 Pinterest-worthy cupcakes for his second birthday with matching party favors for every child in his preschool class. He won’t care that on some nights dinner was not a homemade organic meal.

He will just remember that we had dinner together every night, not that it was from a box or bag. I know that he will not remember that his birthday cake was store-bought, but he will remember that we did something special together to celebrate it. I know all of this, yet I still feel guilty that the cake was not organic and made from scratch.

Maybe there really is not much to truly feel guilty about. My son knows I love and support him, even if dinner is from McDonald’s sometimes. Maybe the important thing is just that: loving and supporting him the best I can in the best way I can.


Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.

Jill Price is a fourth grade teacher and a mom to a teenage son. She was diagnosed with CMT 1a at the age of 2. Jill loves to travel and enjoys spending time with her family and friends.
Jill Price is a fourth grade teacher and a mom to a teenage son. She was diagnosed with CMT 1a at the age of 2. Jill loves to travel and enjoys spending time with her family and friends.

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