MDA Ambassador Guest Blog: How Finding Community Helped Me Face the Fear of Having My Son Tested for CMT

Kevin Crowley is a 48-year-old father of two, husband to the most beautiful woman in the world, dad of a yellow Labrador Retriever, and a coach of the world’s greatest 5th-6th grade youth football team. He was diagnosed with Charcot-Marie-Tooth disease (CMT)1A in his late 20’s. He lives with depression and PTSD and is also currently battling avascular necrosis in his left femur. He is a self-described “gear head” at heart, with an engineering and law enforcement background. Kevin is currently self-employed. As an ambassador for the Muscular Dystrophy Association and an advocate for the CMT community, he feels that he has finally found a sense of peace and belonging that he had never experienced before. Kevin values connecting with others and says that his door, phone, and email are always open for meaningful chats with others!

Being a father and stepfather has definitely had its challenges. Everything from building a relationship with a 12-year-old girl who really didn’t want a stepdad at first, to sleepless days and working night shifts to keep my own newborn son at home during his early years.

Kevin and his daughter.

Not much of it was easy – but all of it was worth it.

My daughter is 25 years old now and our bond is unshakeable. All the work we put in has developed into a beautiful relationship that I couldn’t live without. Without bragging too much, I’d say she and I both got it right.

My son is 11 years old. There are days when he tests me. There are days when he makes me the proudest dad I could ever be. Watching him and his mannerisms every day, it’s clear that he is a chip off the old block. His hobbies align with mine, his snarky sense of humor has a lot of me in it, and I’ll even admit that on the challenging days I catch myself repeating to him what my dad would say to me 37 years ago. So, I have to own that too!

He’s a beautiful blend of his mother and I, but she and I could pass as siblings, so it makes it easy to claim his physical traits for both of us. He’s a tall, pasty white Irish kid that I adore. Family and old acquaintances of mine are always quick to point out that he looks like me or “I remember you looking exactly like that!”

No doubt he is my son.

And that, that is where I have had the hardest struggle of my life.

Fatherhood unchartered

I live with Charcot-Marie-Tooth 1-A, passed down from my maternal side. I struggled in sports, my career, and my personal life. CMT is a part of me and my journey and fighting it every day has become my norm.

CMT progresses as you age so my body changes as the calendar flips, but I’ve done very well adapting and having a full life. As I get older, I pay more attention to how my feet and toes are deteriorating and I am now aware of the symptoms starting to show in my hands. It’s nothing more than being mindful of my status and taking better care of myself, especially after becoming a father.

Then…one day…I caught myself watching my son’s feet. Watching him walk. Watching him move his toes. I found myself running my hand over his calves and feet while he napped on my lap. Without even realizing it, I was looking for things that only I could see.

The older he got, the more I watched.

“What are you doing to my feet, Dada?!”

Kevin and his son.

“Move your toes for me bud. Can you feel this? How about this?”

Each time I did things like this, I felt a relief that his feet were not like mine – but my CMT didn’t set in until puberty and that time is coming near for him.

This spring, my wife and I were trying to make the decision to have our son complete genetic testing to see if he carried the gene for CMT. What felt like out of the blue, my depression started to come into play more and more. I had a strong grip on it after building the life and family that I always wanted, and I had kept it at bay for nearly a decade. But no matter how busy I stayed, no matter how positive I tried to be…something had ignited it and was pouring fuel on it.

I attended many counseling sessions; we discussed things in my past and moments in time that I felt gave birth to my depression. Then one day…a bad day, while sitting with my counselor, she asked about my son. I knew she was trying to redirect me to positive things in my life, and she knew that little boy was my everything. After some smiles and giggling about how much he’s his father’s son, she…unknowingly…dropped a bomb on me.

“Does he have CMT as well?”

She verbalized it and that’s all it took. The way that I was feeling was because of the fear that my son might also have CMT.

Once the smoke cleared, she very lovingly said, ”We found it, now we can fight it,” about what was triggering my depression: fear.

Facing the fear and finding answers

If you’re a Gen-Xer like me, and played with GI Joes as a kid, you’ll remember that every GI Joe cartoon and commercial ended with, “And knowing is half the battle!” The problem is, sometimes you hate knowing.

I know now this is the jet fuel that’s been feeding my depression, and I came to realize that I need to know if I’ve passed the gene for CMT onto my son. It needed to be more than me watching his feet, it needed to be more than my hopes.

We set up a meeting with our physician and ordered genetic testing for my son. During this process, I had never felt so alone and so guilty. I covered his blood work appointment up with, “It’s just stuff to find out about your allergies,” so that he wouldn’t worry. I found myself feeling so guilty that I wouldn’t speak to his mother about it. I felt like I had created a huge problem inside this perfect little family, and that I alone had to face it and fight it.

I couldn’t.

Nothing I did seemed to make a dent in it.

Then I did something not only out of my comfort zone…out of my comfort world…I joined the MDA.

Realizing I don’t have to fight alone

Nervous, anxious, uneasy, and actually sick to my stomach…I sat in on my first MDA Ambassador meeting. As I looked at my computer screen, which was full of faces from all over the world, I slowly realized that I may be alone in my head, my home, and even my town with this disease and battle I’m fighting, but I’m not alone in this world.

Every square had a different face, a different story, a different life. Some young, some parents, some with a few things in common with me and some with what I thought was nothing in common…until I realized we all had one thing in common…each other.

We were all looking for each other.

Whether we were sitting alone or in a home full of family, we were all looking for each other knowing that no matter how much we’re loved, how much support we have, we need our people that understand us in our darkest, deepest struggles. You need a person that you don’t have to act with. You need people that don’t depend on you to be a spouse, a parent, or a coworker. You just need a face that looks back at you and says, “I get it.”

Today, I’m still waiting for the results of my son’s  testing to return. It’s not easy. I know that if his tests  come back negative, I’ll shoot off fireworks. But if it comes back positive, I know how to manage it from my own life experiences. I know that being a member of this community and an Ambassador for the MDA, I have so many good souls that will “get me.”

That is why I will get through this.