Raising a Child with CMT: Our Story

(Written for Katerina’s CMT Blog: Beauty in the Pain: https://kballsmith.wixsite.com/blog)

Who is Katerina?

Katerina is a bright young college student living with Charcot-Marie-Tooth disease. Officially diagnosed at 17 years old, her symptoms progressed rapidly, leaving her little time to adapt to a physical disability, unrelenting fatigue, chronic pain, leg braces, and a wheelchair/scooter.

Although her CMT symptoms pose many limitations, she’s a fighter and continues to go to college, dance, and play a big part in the CMTA’s new young adult community – Compass. She also is a talented writer, aiming to encourage and inspire others who live with chronic illness, pain, and fatigue.

​When I first spoke with Katerina, I was blown away by her tenacity, courage, and coping skills. Katerina was a featured guest speaker on the CMTA’s official podcast, CMT 4 Me – listen here: https://podcasts.apple.com/us/podcast/katerinas-story-living-life-from-a-new-perspective/id1585138996?i=1000548328022

Listen to her podcast, subscribe to her blog. She’s a gift to our community! xoxo

Yohan and me at the VT Cycle 4 CMT in 2019

The Article

“He has what?” I asked when the neurologist mentioned something about sharks and a

tooth. Dr. Sum, the pediatric neurologist was using words like nerves, genes, muscle

atrophy, and progression. I wasn’t able to quite grasp what he was trying to convey, but it

did not sound good. Something was amiss with my 7-year-old son, Yohan, and now this

ailment had a name – CMT or Charcot-Marie-Tooth disease. When he told us this disease

was incurable and progressive, I completely lost it.

Before he left the room, he gave me a card, “Here is the website for the Charcot-Marie-

Tooth Association (CMTA). Call them for a packet of information. In the meantime,

continue with physical therapy, and occupational therapy. I’ll see Yohan in a year unless

something else crops up.” And that was that!

Neither my husband nor I tested positive for CMT, so why is it that my only child had a

heritable genetic mutation causing a life-changing neuromuscular disease? What did I do

wrong? How will we deal with this as individuals and as a family? What does the future

hold?

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, my only child, had to endure

such challenges so early on in life. Initially, I experienced grief in all its stages—denial,

anger, bargaining, depression, and acceptance—and just when I think acceptance

remained strong in my heart, I had setbacks, reverting to anger and sliding down the

ladder 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 rebuild our dreams, our hopes, and our wishes for Yohan.

I quickly learned this reassessment would not be a one-time project, but a repetitive task

taking time, effort, and a lot of soul searching.

Seeing a child struggling with pain, braces, physical limitations, and obvious differences

made me unspeakably sad. My maternal instincts told 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 and self-confidence lessened, the more I

would try to make his life easier in any way possible.

Yet, kids are resilient and smart. On some level, Yohan felt my fears and reflected them

back by becoming more and more anxious, less focused, and simply put, a very unhappy

child. Something had to give.

What Else Could We Do?

Lightening his load did not seem to be the answer, and neither did catering to his every

need. In retrospect, I was allowing him to be more dependent on me for everything, and

his teachers in school commented on his lack of autonomy and self-motivation.

My husband and I thought long and hard about what was playing out before our eyes and

decided to get some help from a therapist who counsels families on raising children with

medical issues. Intuitively, we knew what measures needed to be taken, but implementing change is hard

and we desperately needed someone to guide us. Slowly but surely, we stopped treating him as different

and let him experience the world on his terms. For me, this was probably the hardest, but most essential

job I had as a parent of a child with special needs.

Tools for Independence

Working together, my husband and I learned how to provide Yohan with the tools needed

to be independent, self-sufficient, tenacious, and optimistic. After numerous

discussions and a lot of trial and error, we got on the same page and worked as a family

towards common goals. My husband started bringing Yohan on camping trips, desert

excursions, and kayaking adventures, treating him like every other kid on the trip.

I changed my mindset, letting him blow off steam on the way home from school, and

listened without judging by creating a safe space for him to open up and talk. Sure, I still

tended to stray at times, fretting over hypothetical possibilities, living much too far in the

future, and being obsessed with “what ifs”—but a shift was taking hold, and overall, life

became more manageable and much more fun.

When all is said and done, Yohan was not the top athlete in his class, so we had the

opportunity to do things a little differently, creating a life full of enriching and rewarding

experiences. Over the years, our motto has been, “Let’s Make it Happen.” We follow our

dreams, live in the moment, cultivate new experiences and live our best lives possible.

Yohan became an expert archer, was scuba-dive certified, visited the Galapagos Islands,

volunteered many hours to CMTA, and graduated from a first-class University and

Graduate school. He is now working in the field of HR for a local start-up company and

enjoying his success.

Yohan is all grown up now!

Encouragement For Parents

If your child/children have CMT, life can still be enjoyable and fulfilling. There is no one

road map to raising a child with CMT, but here are a couple of key concepts I often share:

-Accept (eventually) the CMT diagnosis – it’s the first step.

  • Talk about CMT with family and friends; don’t hide it.
  • Help your children describe what CMT is, in their own words, if asked.
  • Let your children know it will all be okay because it will.
  • Embrace challenges and praise your children for doing their best.
  • Create a safe space for your children to talk about frustrations and anger.
  • Let go and let them live their lives to the fullest, with autonomy and independence.
  • Laugh heartily and often. Laughter really is the best medicine.
  • Involve yourself with the CMTA. We have so many resources for parents and kids alike.

Camp Footprint, the CMTA’s sleep-away summer camp for kids with CMT changes lives. Our volunteers make us shine. Get involved and meet forever friends who understand. Neither your children nor you should deal with this alone. We are better together.

I could not be prouder of Yohan. He’s kind, empathic, funny, and engaging. He rarely complains about his CMT, and lives with the knowledge that every day is a blessing, He has a supportive extended family and friends who love him for his authentic self. 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!

– Elizabeth Ouellette

CMTA Board Member, Elizabeth Ouellette

I’ve been volunteering for CMTA for the past 20 years. Here are a few of my most cherished achievements: I created a school-based program, Teaching Kids About CMT, built the national CMTA Branch network, initiated CMT Awareness week, co-founded the Cycle 4 CMT and co-launched the CMTA’s official podcast CMT 4 Me Podcast with my brother, Chris, who is also on the CMTA Board of Directors.

Aha Moments

Last weekend, I planned to meet a friend at 7:45 on Sunday morning. I arrived a little early (growing up, I learned 10 minutes early was considered “on time,” but arriving “on time” meant you were just plain late). My friend pulled up on time (which means she was late – 😊). As her car slid into the empty parking spot, I could see her left hand holding her cell to her left ear, talking, laughing, and talking some more. Five minutes later, she opened the door, walked over to me while still chatting away, covered the speaker part of the phone, and whispered, “Hi!” “Hi,” I whispered back.

I did not tune into her mood or her joy. I felt irritable and impatient; I was stuck in my own reality, and I just wanted to walk, get moving, and get on with the day.

When she was finally ready to walk, yet another woman pulled her truck over to the side of the road to chit-chat with my outgoing friend. “Ugh,” I thought. “More time wasted talking.” My friend has non-stop energy and knows a zillion people, attracting people like bees to honey.

“OMG,” I thought. “We will be here all morning, probably until noon at this rate. I looked at my watch, but it was only 8:25. Why did it seem like I had waited for over an hour? We had plenty of time, but time was not the problem. I was just in a mood. It happens.

The best is yet to come: Impulsively, I made my way over to the truck and blurted out, “Shamika, you remind me of my mom. I love my mom, but whenever we were together, all the homeless people in the downtown area would claw their way to talk to her. She was the kindest soul ever, but we never got to where we were going. I’d end up leaving her with her friends and waiting at a nearby café!” (Wow, where did that come from?)

Joking with the woman in the truck, “And just to be clear, I am not insinuating you remind me of a homeless person….. HAHAHAHA.” I think she got the joke, but honestly, I was acting like a 5-year old child. That comment sort of ended the three-way conversation.

I’ve been working on emotional mastery, with Executive Life Coach Arda Ozdemir, using the POWER method (rise2realize.com) which has been transformational. But that particular day, everything seemed to fly out the window. That day, there was no Pause, Observe, Welcome, Earth, React.

There was only react. Well, back to the drawing board.

Once we were alone, my friend looked at me with disbelief, “What is with you today?” Nothing!! I assured her defensively. “Nothing at all.” And then the memories whooshed back into my consciousness, and the tears started to flow.

This was my Aha moment.

Thinking back to childhood, I remember my mom being uber busy, working long hours, talking on the phone and involved in a million trillion activities. Everything she did was to make a better life for her children.

My mom had to work full-time, as did my dad. With 3 children, a bunch of half brothers and sisters, cousins, aunts, uncles, and grandparents all living in close proximity, neither parent had time to spare. But a 5-year-old doesn’t care about all that. A 5-year-old wants what she wants and, in its absence, creates coping mechanisms to make sense of the world.

 When I heard my friend on the phone, taking her time, chatting with others, I went right back to my early memories and lashed out with repressed childhood feelings of loneliness and not feeling seen.

I had dreamed of having a mom who made me lunch, brought me to piano lessons, and waited anxiously as I walked in the door after school. A child understands neither the financial responsibility required to raise a family nor the expectations and responsibilities of adulting.

 A year ago, I would not have had the aptitude to look for meaning behind my behavior. I went along, day to day, believing I was born emotionless, one-dimensional, superficial, and lacking in depth. I was not in touch with my authentic self (I did not even know I had an authentic self). I’m only getting to know her now. It’s a delightful process, like a treasure hunt. 

Working with Rise 2 Realize Life Coach, Arda Ozdemir, I’ve learned to pause and observe those emotional reactions – ideally – before they happen, connecting with and processing those repressed fears/feelings before responding. I’ve grown so much, but Arda reminds me that this is only the beginning, meaning this work is a marathon, not a race, and I’m okay with that.

Now, back to my friend. I shared my reflections, and she was open to hearing my truth. I apologized for being impatient and explained why I acted so rudely. To her credit, she reflected upon her own life and raised her tendency toward phone conversations with friends/work while her family was around.

To my surprise, she too experienced an AHA moment. She wondered, “Do her friends/family resent her talking on the phone when spending time together?” It was the first time she’d considered how her actions affected her loved ones. At the end of our walk, she planned to check in with them to get their feedback. My shared moment of clarity got her thinking about her own life and habits. How beautiful is that?

Ideally, if you can remember to be more present and pause before reacting, impulsive actions and words can be minimized. But, pausing is the first step, and it takes practice to get out of reactionary fight-or-flight mode. On the app Insight Timer, Arda has a helpful self-observation meditation which has helped me be more present: https://insighttimer.com/ardaozdemir/guided-meditations/self-observation-meditation-2

Try it. It’s not easy to focus the mind, but with practice, you get better. And, the silver lining? It only takes 2-3 minutes. So, take a moment to pause and figure out why you are acting/reacting the way you do. A little bit of self-knowledge goes a very long way.