“His test came back positive for what? Sure, that explains a lot, but what’s it called again?” I asked stunned and a lot bewildered. “CHär/- Kät/ -Merēd -TOOTH, which sounded just wrong when he said it. I guess it sounds strange ANY way you say it, but he was completely butchering the French pronunciation of my son’s new disease (we are all French – can you blame me?) The take away was that our beloved 7-year old son Yohan had a progressive disease of the nerves, WITH NO TREATMENT OR CURE, which would make his muscles weak and useless over time. I felt dead inside – for a very long time.
My world shattered into millions of pieces that day, and I never thought we’d be able to pick up all the scattered bits to reformulate our dreams, our hopes, and our wishes for our son and our family. This reassessment took time, effort, and a lot of soul-searching, but we managed to accept the diagnosis and manage the Charcot-Marie-Tooth disease or CMT the best we could…. one day at a time.
As a mom, it was tough watching my child struggle with pain, braces, physical limitations, and obvious differences. Maternal instinct ordered me to protect, shelter, cajole, and, especially, do something—anything—to make the world a friendlier, more secure place for him.
For a while, school also became an inhospitable place, and bullies had their way of ruining a perfectly good day. Yohan’s self –esteem and self-confidence took major hits and his anxiety skyrocketed. The more I tried to lessen his burden by catering to his needs and lightening his load, the more resentful and withdrawn he became. Unknowingly, I was giving him the message he should not go out of his comfort zone because the world is a dangerous, scary place. And, I was setting him up to be reliant on me for simple tasks he was able to do all by himself.
We found an excellent therapist whose specialty was counseling kids with medical issues. Our goal was to empower him by making him accountable for his actions, giving him more and more responsibility, and providing him the space he needed to become autonomous and independent.
Sounds pretty good on paper, but implementation was another story.
On one of our many trips to Vermont, Yohan wanted to try snowboarding. I subtly, but unsuccessfully tried to talk him out of it because I did not want him to get hurt nor fail. He has CMT-related back issues (kyphoscoliosis), tight calves and heel chords.
Kyphosis + Scoliosis = Kyphoscoliosis
I assumed the worse – in my frightened mind, he had at least a 75%, maybe 80% chance of falling in the powdered snow, way over his head, and suffocating because he would not be able to stand up.
With the least amount of enthusiasm you can imagine, I rented the snowboarding equipment, grumbling under my breath the whole time, and when father and son left early one morning after Christmas, I stayed home and tried to keep very busy, blotting out what was happening on the slopes.
Later that day, after what seemed like an eternity, Yohan burst through the door, still in one piece and with a look of content satisfaction on his face. “I loved it!” he blurted out proudly. “I’m going to take this on seriously! I had such a great day!”
Like many first-time snowboarders, Yohan took a good many tumbles and falls in the snow, but he was confident in his abilities. He knew what he wanted, so he left home with determination and a can-do attitude, and came back fulfilled with a sense of accomplishment.
That event was followed by many more like it and served to reinforce what I already knew as a parent but still found difficult to wrap my head around. Even though Yohan has CMT, there are many things he can do with the right support, guidance, and freedom. Gilles, my husband was exemplary in providing many unique opportunities for him to explore his surroundings. An avid skier, mountain climber, biker, etc….he went out of his way to find activities that he and Yohan could do together, as a team. I am so grateful for my husband’s patience, effort and time with Yohan, as his childhood was full of fun adventures and learning experiences. I wasn’t as thrilled about some of these outings at the time, but I usually saw the photos after the fact and they speak for themselves-they have memories- good and bad- to last a lifetime! As parents, if we do not encourage our children to dream big, they might never know all the beauty, wonder, opportunity this world holds.
Yohan is scuba certified, thanks to his dad.
Do you remember the movie about the life of Ray Charles, “Ray”? Despite his total and permanent blindness at the age of 7, Ray Charles’ mother treated him the same as any other child. He was made to do his chores, learn to get around without a cane, and fend for himself. “I won’t be here forever,” she repeatedly told him. Harsh though her treatment of the young Ray seemed, their story is filled with passion, love and many teachable moments. As hard as it may be, and still is, I have witnessed Yohan’s challenges, disappointments, and heartbreaks. But I no longer worry as I am confident he has the emotional fortitude to get through just about everything. If there is just one gift with which I wish to leave him, it is the knowledge that with an open and positive mindset, he can and will achieve his heart’s desire.
Archery is still one of his favorite pastimes.
Loved your perspective;but, I loved Yohan’s determination more. Thank you for sharing your story of courage, determination and love by all of you. ❤️
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Thanks George. We feel so fortunate to have loving and caring family members and friends who have supported and still support us along by this road riddled with speed bumps and a few nasty potholes.
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This is an absolutely inspiring story of a little boy, Yohan, that when faced with a disability had no intention of giving into it and a mother and father, that even though of course worried because that’s what parents do, let this boy experience life and to not let the CMT get in his way. Here are my two favorite quotes from this story. “Even though Yohan has CMT, there are many things he can do with the right support, guidance, and freedom”
“As parents, if we do not encourage our children to dream big, they might never know all the beauty, wonder, opportunity this world holds.” Just really great and very similar to my boyhood and my mother’s instinctive protectiveness, but encouraging words that I could do anything I put my mind to. My best wishes to you all…Go Yohan!!!
Thanks Quentin. I wish I could have met your mom. She sounds like a wonderful woman-and I bet I would have learned so much from her. But watching you tackle life’s obstacle course tells me that she was insightful and intuitive! She did good!
Elizabeth, I feel somewhat awkward. I mean I know your sons name is Yohan, and I should have made the connection. I can be slow sometimes. I am so glad you shared your own personal story with your son and his CMT challenges. He is an awesome young man indeed. Thanks for this blog as well my friend.
No reason to feel awkward my friend. We have different last names. How are you to know? Also, Yohan is sometimes glad not to be associated with me – HAHAHA. xoxo
Brilliant! So moving and inspirational. Many thanks for sharing your journey with us Liz.
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Chip, Thanks somuch for reading my blog post! And many thanks for taking the time to comment. Take good care!
I am so glad I found this, I loved it! My boy will be 7 in June and was diagnosed with CMT 18 months ago. You have explained my thoughts and sentiments perfectly. And your Yohan sounds a lot like my Ollie. Thank you for sharing 💙
It was really nice seeing this again and reminding me that obstacles in life are mearly challenges to achieving the rewards that are there for anyone with the determination to go for it ❤️
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Love your commentary. So grateful for your love and support.