by Elizabeth Ouellette

“He has what? I’ve never even heard of CMT! I don’t believe it. I won’t believe it! There must be some mistake.”

These were the first thoughts racing frantically through my mind when the neurologist finally came up with the definitive diagnosis for my then seven-year-old son, Yohan.

Neither my husband nor I tested positive for CMT, so why is it that my only child has a genetic mutation causing this life-changing neuromuscular disease? What did I do wrong? How will we deal with this as individuals and as a family?

I would ask myself these and many other questions over and over again, trying to understand, striving to make sense of why an innocent child has to endure such challenges so early in life. I have experienced grief in all its stages—denial, anger, bargaining, depression and acceptance—and just when I think acceptance will remain strong in my heart, I have setbacks, reverting back to anger and sliding down the scale once more.

A World Shattered in a Million Pieces
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, while creating a different outlook on all our lives. This reassessment took time, effort and a lot of soul searching, but I truly think we are all making headway.

Seeing a child struggling with pain, braces, physical limitations and obvious differences makes me frantic. My maternal instincts tell me to protect, shelter, cajole and especially do something—anything—to make the world a friendlier, more secure place for him. The more his self-esteem plummeted, the more his self-confidence lessened, the more he buried his emotions, the more I would try to make all the bad stuff disappear, pretending that there were no underlying health issues and that everything was peachy keen.

However, kids are too smart and they know when the mask of denial is blotting out reality. As time passed, Yohan became more and more anxious, less focused and simply put, a very unhappy child.

What Else Could I Do?
Lightening his load did not seem to be the answer, and neither did catering to all his needs. In retrospect, he was becoming more dependent on me for everything, and his teachers in school commented on his lack of autonomy, maturity and self-motivation.

Moreover, I realized that the secondary gains we both obtained by his being “sick” were actually hindering his development and emotional growth. On the one hand, I was disillusioned by the fact that my inner desire to feel needed and indispensable was actually playing a role in his inability to blossom and to manage the effects of his CMT.

On the other hand, his neuromuscular disease quickly became a great way of avoiding uncomfortable situations and often served as an escape from school, from peer relationships, and from dealing with his CMT in a healthy way.

I thought long and hard about what was playing out before my eyes and decided to get some help from a therapist who counsels families on raising children with medical issues and/or learning differences (both of which pertain to Yohan). Intuitively, I knew what measures needed to be taken, yet I was searching for someone to help illuminate the way and help me along the path.

I certainly did not want my child to suffer unnecessarily, but making him accountable for his actions, giving him more and more responsibility and especially “cutting the umbilical cord” so that he may experience the world on his own terms are probably the hardest, but most essential jobs I have as a parent of a child with special needs.

Tools for Independence
Both my husband and I were determined to provide him with tools needed to be independent, self-sufficient, tenacious and hopefully, optimistic. After numerous discussions and a lot of trial and error, I now believe that all three of us, are on the same wavelength, working together towards common goals. Nevertheless, I still tend to stray at times, fretting over hypothetical possibilities, living much too far in the future, and being obsessed with “what ifs”—what if this happens, what if that happens….

Yohan snowboarding All of this came into play on a recent trip to Vermont. Four years ago, Yohan had tried skiing, but he was very uncomfortable and lacked the flexibility to be successful. He has been content to slide and throw snowballs at his parents since then, but he does have surprisingly good balance so Steve, his personal trainer at the YMCA, encouraged him to try snowboarding this time around.

I try very hard not to be an overprotective mom, but I privately hoped Steve would not insist. I also silently wished Yohan would dismiss the idea. That was not to happen, however. My husband loves snow sports, and he was excited to have Yohan give snowboarding a try.

As for Yohan, he was completely pumped up to hit the slopes! Unenthusiastically, 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 stay busy, crossing and uncrossing my fingers. I imagined the worst but several hours later Yohan bounded through the door, still in one piece and with a look of content satisfaction on his face. “I loved it!” he blurted, “I’m going to take this on seriously!” “Phew”, I thought. “What a relief!”

Like many first time snowboarders, Yohan took a good many tumbles and falls in the snow, but he was confident of his potential (thanks to the motivational and insightful words of his personal trainer) and his determination and resilience took over, making his experience a complete success. I admire Yohan for his bright outlook and positive attitude, and I am also very grateful for my husband’s support and his unwavering confidence in Yohan.

This event also reinforced what I already know as a parent but still find it difficult to admit. Even though Yohan has CMT, there are many things he can do with the right support and guidance, and he has to be given the freedom to grow and explore a world filled with unknown dangers. New activities may not always turn out as well, but if we don’t let him try, he’ll never know what he can do.

As I write this, I am reminded of the movie “Ray.” Despite his total and permanent blindness at the age of 7, Ray’s mother treated him no differently than 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 Charles seemed, their story is filled with wisdom beyond words, and it continues to be a source of hope and inspiration for me. As hard as it may be, I, too, will witness the successes, the failures and the struggles my son will have to contend with during his journey through life.

If there is just one gift with which I wish to leave him, it is the knowledge that he can achieve his heart’s desire. He just has to believe in himself.