Throughout My CMT Journey, My Mom Has Been My Biggest Supporter

Throughout My CMT Journey, My Mom Has Been My Biggest Supporter

One person has stood by my side through it all. This person supports me in everything I do, even if she doesn’t agree with my decisions. She is there for me at any time of the day or night, even when I call her in tears at 3 a.m. She never complains, and she always has time to listen.

This person is, of course, my mom!

I am pretty sure she had no idea what Charcot-Marie-Tooth was, or what it entailed, when she married my dad. My dad has CMT, and so do my brother and sister. Although I doubt she knew anything about this crazy disorder, my mom took it upon herself to learn as much as she could about CMT and how to handle the symptoms. She researched the information that was available at the time and looked for the best doctors for her family.

When she heard that sports were a good way to slow the progression of the condition, my older brother and sister played sports. She learned that dance was a great way to strengthen the ankles and calf muscles, so she enrolled my sister and me in dance class.

My mom has been there to listen and support me on each step of my CMT journey. She is the first person I call after a doctor’s appointment for myself and my son. She sat on the phone with me while I cried over the decision to get ankle-foot orthosis. She talked me through the pros and cons and made sure I was OK with the decision I was making. She supported me through the journey of getting fitted and growing used to the AFOs, and she promised to go shoe shopping with me.

Since her marriage, my mom has been through every part of the CMT journey with my dad, brother, sister, and me. I often call her, just because I know she will be there to listen. When any of us has a new symptom or the doctor suggests a new treatment or idea, our mom is the first person we tell. She is also the first person to ask questions and to find out more information or search for gadgets to help make life easier for us. We know that she’s always there to advise and support us in any way she can.

I know CMT is not something she wanted for her children and grandchildren. I know that we are truly lucky, and I hope she knows how much I appreciate all she does for us.

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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.

2 comments

  1. Mark Willis says:

    Your Mom and Dad totally ROCK! I have so much respect for the amazing journey they have traveled and handled with such dignity and grace.

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