ONCE UPON A GENE - Trailer
The pure joy in Ford's laugh is what defines him. At 16 months old, he was diagnosed with CTNNB1 Syndrome, a diagnosis so rare that they just call it by the name of the mutated gene. He was 1 in 30 when we were told about his diagnosis. That diagnosis isn't what defines him- his laughter is. His toughness defines him. His honest desire to bring light and joy to everyone he meets defines him.
My name is Effie and I'm Ford's mom. I aspire everyday to be as tough as my kiddo is. This is not the path I thought my life would take. I always thought by the time my little boy was 3, he'd be able to walk and call me Mama. He can't, not yet anyway. I mourn those losses and I always will. But I wouldn't change a thing about Ford if I could. He has taught me and my family to embrace the beautiful things in our lives.
A major part of this process is finding others who have been through the same thing I'm going through. That wasn't as easy as I thought it would be. I came from a big family of 12 siblings with 30 kids of their own by the time Ford was born. Not one of them had been through this experience. No one I had ever known had. That's how I came to the world of podcasts and they became a lifeline for me. I read whatever books and blogs I could find, but it was podcasts that lifted me up in a way that other mediums couldn't. It was getting to hear from people going through the same thing as me, getting to hear the love in their voice, the hope and the grief. And so I'm here, talking to you and hoping to help others in the community to see the beauty of the path we all walk together.
We are a community of parents, siblings, grandparents and friends. We have hidden those with disabilities in our communities for too long. Hiding from the pain and the difficult truths has come at a cost to all of us. Disability is diversity and we've been ignoring it.
This is Once Upon a Gene- a podcast about love, hope, grief and growth.
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