“Can you be the elevator guy?” I asked. “When people walk in, introduce yourself, show them to into the elevator, push the down button and point out the way to the meeting room. Got it?”
“Whatever” he sighed, looking exaggeratedly bored.
I don’t get it. 5 years ago, he absolutely loved pressing those elevator buttons. I mean, it used to be a whole thing. When he was with his little friends, they fought tooth and nail to be the one that got to choose the direction of our destiny. There would be meltdowns, tantrums until each had had a turn. Now he had the run of the place and he was bored?
I was a little anxious about bringing 10-year-old Yohan to my first CMTA support group. At that point in time, we had not met anyone with CMT. This would be our first foray into the CMT community and we had no idea what or who to expect. Would there be only old people there, relying on canes, bending over walkers, or sitting in wheelchairs, completely disabled by the harsh effects of a lifetime of CMT? How would Yohan react to the young and/or old whose CMT had progressed to the point of curled hands, atrophied legs, skinny calves and high-arched feet?
I couldn’t help asking myself if I was on the verge of making another very dumb and costly parent mistake? I imagined the weekly psychotherapy bills I’d be paying as a senior citizen, due to having caused him a lifetime of trauma and PTSD. “She made me attend these horrible groups …..and left me there by myself……,” he’d lament while lying on the therapist’s couch.
In retrospect, I too was concerned about how I would feel about glimpsing into the possible future of my own son’s life with advanced CMT. Having a change of heart, an inside, harsh voice scolded me, “You should have left him at home! What were you thinking?” Darn. Why didn’t I think about asking Dr. Spock, the world-renowned pediatrician? Now it was just too late. Time to bite the bullet.
As my future CMT family made its way through the doors, I blocked out the negativity and threw myself into the meeting – greeting, talking, explaining, introducing; there was no time to worry about the possibility of Yohan’s PTSD reaction, the therapy bills, the nightmares, the medication prescribed for anxiety, the mounting debt.
The clock struck 2:00 pm and most everyone was there, including the elevator guy, Yohan. I asked him to take a seat in the circle, along with the other attendees while I ran back upstairs to make sure there were no stragglers, people who’d lost their way and could not find the room.
When I walked back to the room, I overheard someone complaining to one of the attendees, Terry, who has become one of our very good friends over the years, “I hate braces too. They suck. The plastic digs into my leg and makes my calf itchy and red. Does that happen to you, too?”
Rounding the corner, I looked up and was dumbfounded to see Yohan engaged in deep conversation with Terry and a few other of the attendees, commiserating about living with CMT. I breathed a sigh of relief – he had found his people.
He made a lot of friends that day, friends who follow his progress and support his CMT journey. These first interactions were instrumental in his acceptance of the disease and his willingness to get involved with the CMT Association, from leading youth groups, speaking at CMTA conferences, spreading awareness, and even fundraising for a cure.
Today, Yohan is in grad school, majoring in psychology. He’s had many ups and downs as his CMT has progressed, but those first relationships served as anchors, grounding and supporting him when times got tough.
Home for vacation just a few weeks ago, we spent time with Jeana and Rylee Sweeney. As I watched him with 12-year-old Rylee, he naturally emulated the love and compassion he experienced with the people who first wholeheartedly embraced him at that first group meeting. It was a beautiful scene to witness.
I’m thankful Yohan attended the branch meetings and found a way to manage life with CMT. He hates the disease, and so do I, but what choice do we have? He knows that everyone with CMT evolves differently, and he is not worried about the distant future. He just tries to get through each day as best he can.
He also believes in “playing it forward” – he enjoys taking the time and offering love, understanding, and compassion to the younger generations who are trying to find a way to live well with CMT.
And me? I’m just thankful it all worked out, and I’ll have enough money for retirement. Therapy is expensive!