My Father's Gift to His Granddaughter With a Disability

September is Charcot-Marie-Tooth Disease (CMT) Awareness Month. I’m writing this in honor of my father, who has been fighting to overcome the struggles and chronic pain this disease causes every day for over 20 years now.

My father was always athletic. When I was born, my parents were living on a farm and he was always a hard worker; he enjoyed it. Growing up we would go hiking and camping, play baseball, and spend hours in the back yard. He loved the outdoors. Then, as a teenager and on into my 20s, I watched him struggle with the unknowns of what was happening to his body. He saw many doctors with different ideas of what may be going on, had surgeries on his back, and then the muscles in his legs started to rapidly deteriorate. He went through a tough depression and a huge life change. But he turned it all around and has been an inspiration for the CMT motto, “If you don’t use it, you lose it.”

I remember talking to my mother about him soon needing a wheelchair and that he may never walk again. That was over 13 years ago. At 67 years old he still walks: with a cane, braces on his legs, and not for long periods of time, but he does it because he wants to live his life. He works on his land, builds fires, rides his horse, climbs on the roof (while my mother calls me in a panic), substitutes at the local high school, and plays with his grandchildren.

When we love someone with a disability, we often wonder why them.  Four years ago I became a mother to a child with a disability when my daughter was born with Moebius syndrome, which is not related to CMT. I then had to watch my infant struggle to survive and go through surgeries, pain, and I felt sadness for her. My dad is one of our biggest advocates. He was always by my side, supporting us, questioning the doctors, staying calm and giving us love.  On the night after celebrating our third Moebius Syndrome Awareness Day, I wrote this in my journal:

Dear Dad,

Yesterday was Moebius Syndrome Awareness Day. It’s our third one and I always get so emotional at the end of the day.  I’m always going to advocate for awareness, but this day is also a reminder that Elena has this syndrome and she will face challenges her whole life.  I was thinking about how confident, happy, and strong she is now and I hope she always will be. Then I thought about your disability. I know you go through tough times because of it. I used to feel sorry for you and sad that you were in pain. But last night I had a realization. Your disability has helped you, and me, see how to be strong, keep going, live life the best you can. You are an incredible role model for Elena. I hope that through your pain and struggles, you know it has a purpose in our life. For me, you are the best example I can show my children. Your strength and love moves through me, which then moves through my children. I see it in Elena now. Thank you. I love you!

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