“People who are disabled its our largest minority… And it seems to be one of the most invisible ones still.”
-Effie Parks
Effie Parks: Once Upon A Gene, A Podcast About Disability, Love and Life
Effie and her son, Ford
Dreams of a perfect childhood, a perfect child, and the perfect life are part of every soon to be mother’s wish list. Effie Parks did find the perfect child, but it took her down a path she never expected.
“I had these fictional ideas of what my life was going to be like as a mom.”
Effie’s child Ford was born disabled, with an extremely a rare disease CTNB1. CTNB1 is a cell health growth neurological disorder. As a result, Ford has a number of disabilities. He needs a wheelchair; has no verbal skill; and suffers from a combination of low trunk tone and dystonia in this arms and legs. The disease, CTNB1, was discovered in 2012 and worldwide, there were only 50 cases when Ford was diagnosed.
Motherhood can be isolating for anyone, but the shock, the magnitude and the isolation that went with Ford’s birth and disability were overwhelming.
“My podcast came about out of desperation. I was so isolated, so sad, so lost. I knew there had to be other people like me.”
So she started Once Upon A Gene, a podcast that would connect her with a worldwide audience of parents, disabled children, and their siblings seeking similar need and connection. The podcast connects families and individuals trying to find their way in a disabled world, a world that most of the rest of us forget about.
“People who are disabled… it’s our largest minority. And it seems to be one of the most invisible ones still.”
Dealing with disability, in Effie’s life, involves juggling work, giving Ford injections, connecting with scientists, trying to have a social life, and keeping tabs on her own mental health. It’s a complex and ever changing set of demands.
“How has it changed me? I honestly couldn’t list the ways.
You just really learn what’s important. It just slows things down in a really good way.”
Ford’s disability has impacted the whole family. Effie notes that in addition to turning her world upside down, it has inspired his brother to develop a highly tuned emotional IQ. The impact of having a disabled brother or sister means that siblings quickly recognize what’s important in life.
“Siblings are one of biggest worries and our biggest treasures. They are the most compassionate, empathetic unsung heroes walking among us.”
Life for the Parks family is very different than what they’d imagined. Juggling parenting to two young children, disability, and just daily life can be a challenge. In this podcast, I ask Effie if she would rewrite her story, would she? Her answer will leave you breathless.
The Parks Family
PS: Effie asked me to note one thing. In this podcast she tells a story about a baby facing an iron deficiency. But she misspoke. She should have said it was a copper deficiency. You can reach Effie at effieparks.com.
Bump In The Road:
Effie Parks, Mom To A Disabled Child
Want The Rest of the Story?
Effie Parks: On Disability and Moving Forward
Ford with his mom, Effie Parks
The second part of this podcast is an absolute must listen. Effie and I talk about life, how we get stuck and how we get unstuck; the joys of mothering a disabled child, and how the power of story can change one’s life. We also explore the impact of disability on the other children in the household and how it impacts their emotional development.
Bump II subscribers can log in here to listen to the second half of the podcast.
One Upon A Gene, A Podcast About Motherhood, Disability And So Much More
“My podcast came about out of desperation.”
“I was so isolated, so sad, so lost.”
“I knew there had to be other people like me.”
“Oh my gosh, connection changed my life.”
“I had these fictional ideas of what my life was going to be like as a mom.”
“It (disability) is such an intro to motherhood that was not even on my radar.”
“You get enamored with this idea of who you think your kid could be or should be and how your life will look. This is all fictional. It’s just you imagining. But you get so tied to it.”
“It (Ford’s disability) was a very traumatic experience.”
“The disabled weren’t included in our daily life. They were just separate. What a disservice we have done.”
“People who are disabled are our largest minority. And it seems to be one of the most invisible ones still.”
“It’s really heartbreaking. I felt so much shame and guilt at first. Did I do something?”
“I’ve learned how to be in the moment and to savor them.”
“You just really learn what’s important. It just slows things downing a really good way.”
“I know I don’t know what my son’s future looks like.”
“The people that I’ve met and the stories I hear…I get so much out of every single one of them.”
“Digging deep is painful but once you practice it, it’s like a muscle. “
“When you’re practicing gratitude it just elevates everything.”
“There’s nothing wrong with the icky feelings. You’re human. You have to feel it. You have to let yourself acknowledge all the feelings and know that’s ok.”
“We need way more allies for people with disabilities.”
“Telling your story. It does something magical.”
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