Effie knew something was “off” with Ford from the day he was born, four years ago. After four months of being blown off by his pediatrician, Ford was admitted to the children’s hospital where he was analyzed and given an official (and extremely rare) diagnosis. Effie was completely blindsided and crushed.
In this episode, Effie shares this experience of receiving Ford’s diagnosis. We also chat about the huge perspective-shift that comes along with a child with medical complexities—the little things are everything. Effie also talks about the precious relationship Ford shares with his younger sister Ezzy, as well as the bittersweet moments of watching Ezzy develop typically.
Effie Parks is the amazing host of the podcast Once Upon a Gene. You can find a link to her podcast in the show notes!
Answer the Q of the Month and see photos of Effie + fam: https://therarelifepodcast.com/
Effie’s podcast Once Upon a Gene: https://effieparks.com/podcast
Follow Effie on Instagram: https://www.instagram.com/onceuponagene.podcast/
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Effie knew something was “off” with her now-4-year-old son Ford from the day he was born. After four months of being blown off by his pediatrician, Ford was admitted to the children’s hospital where he was analyzed and given an official (and extremely rare) diagnosis.
He is one of only 30 others with the same genetic deletion.
The specialist rattled off a long list of issues Ford was facing medically, and then proceeded to tell her that her son had a shortened lifespan.
Effie was completely blindsided and crushed.
In our conversation, we didn’t just cover the heart wrenching aspects of her journey with Ford; we talked about the bright, shining, life-improving aspects that are happily a part of the deal as well.
Effie and I agreed that one of the best parts of it all is the appreciation we have for things that most people might peg as insignificant. Our children have to work so hard to everyday things. She talked about the exhilaration of hearing Ford utter a sweet, “hi” (currently his only word), the joy of seeing him progress with his gait trainer, and the thrill of him holding a ball without flinging it across the room. He works so hard every day, and the satisfaction when he accomplishes seemingly minor things is mutual.
Her voice full of awe and gratitude, she said:
“Would I be the mom I am now that really savors this, and will stand there and watch something even if I'm in the pouring rain because Ford's doing it and it's making him happy? Like, I just don't know if I would appreciate everything as much. I mean, I know I wouldn't. I know I wouldn't be who I am. Ford's made me better.”
Isn’t this the truth? Can I get an “amen”? I can wholly relate to this sentiment. All the little things are suddenly not so little. They’re precious and monumental and awe-inspiring. And the way they do it all with grit and a smile or a laugh is a challenge for us to do the same.
When I asked Effie about what she loves about Ford, she immediately told me about his laugh. She said it’s “out of this world” and totally contagious. He knows how to make anyone laugh and therefore brings joy to so many, especially her. According to Effie:
“He's able to find something to laugh about in some of the hardest situations that he's in, and it's one of his superpowers.”
Ford truly is remarkable in so many ways.
And Effie and her husband knew they wanted him to have a sibling. They always knew they wanted multiple children, so adding Ford’s 2-year-old sister Ezzy made sense. In our conversation, Effie admitted a bit sheepishly that she also wanted to know what it was like to have a typical child. She had yet to experience having a child free of hospitals, therapies, and medical equipment.
Ezzy has indeed hit every expected milestone without the help of therapists. Effie and Casey experience wonder and awe at every little thing she does without assistance—things like stacking blocks and drinking milk; which are the very things Ford may never do.
Because of that, everything Ezzy does brings a bittersweetness. But even at only 2-years-old, Ezzy and Ford already have the sweetest relationship. Of it, she told me:
“Watching the tenderness between them right now is everything!”
She told me a story to illustrate this tenderness: While at a dinner with family, they heard Ford in the other room and knew he needed help.
Ezzy raced down the hall before Effie and Casey.
When they reached Ford, they saw his iPad had fallen. Ezzy snatched it up and handed it up to Ford. He looked at her with appreciation and love and the moment brought tears. Seeing Ezzy assist her brother, and the sweet connection at such a young age was truly heartwarming.
When I heard this story, I’ll be totally honest—I felt my stomach twist.
Effie and I have our children in the reverse order: My typical daughter is 4-years-old, and my little rarity Kimball is 2. And their relationship has been tumultuous from the very beginning. I long for them to share a relationship like the one Ford and Ezzy have, and it’s definitely a sore spot.
In the episode, we chatted about this difference in our children and how understandable it is. The siblings of our special-needs children are the “unsung heroes”, as Effie put it. They go through the same things we do as parents—they experience grief, fear, and unknown right along with us. And for the most part, the siblings grow up to be hugely empathetic, caring adults.
They really do go through so much right along with us, and get to experience the world of disability from a front-seat view.
To wrap up, I asked Effie to share one more time how much Ford means to her. She gushed:
“He’s changed everything. He's changed me and my entire family and all of my friends. People have slowed down, and they've really come together and supported us. And it's just because of this kid that makes everybody smile and he makes everybody have a good day. No matter what's happening, if you look at Ford, he's gonna give you his funny side-eye, and he's gonna make you laugh. Nothing is more important than how Ford can make you feel.”
So here’s to the children that make our lives so rich and full of love.
Feb 8 2023, 7:15pm
A very touching story, thank you for your honest sharing. My niece has a three month old boy who just was diagnosed with PACS2, an ultra rare condition. She has found a Facebook group for guidance - I will tell her about this Podcast.