ONCE UPON A GENE - EPISODE 002 - Effie
I grew up in a small town in western Montana, one of the best small towns, where your friends live down the dirt path from you and you came home when you heard your mom calling before it got dark. I have 12 brothers and sisters, 8 sisters and 4 brothers. I was an aunt by the time I was 10 and a great aunt by the time I was 30. My siblings are some of my favorite people in the whole world and I couldn't be more grateful for them. I have fond memories of sleeping on the trampoline under the stars in the summer, kicking off the sleeping bags in the morning and turning on the sprinkler underneath. My parent's driveway has an enormous pothole in it and it was amazing after a quick summer rainstorm because it would be full of water and I loved playing in the giant mud puddle.
Winter wasn't any less amazing than summer. You know that smell that says it's about to snow? Anyone who grew up in Montana knows that smell. There are a few things more calming and beautiful than the first snow. It's a quiet I can only compare to the kind of quiet after a person pulls your parachute when you skydive. It's the most perfect moment of true silence where you can listen, and be aware of yourself and your surroundings. Montana winters were days of building snowmen and forts, riding on a tube behind a truck and snow angels. My mom made hot cocoa for us homemade and I've never been able to enjoy a cup of what the rest of the word tries to pass off as hot cocoa. I love the gifts I have from where I grew up.
I live in Seattle, Washington with my husband and two kids. My oldest son, Ford, is the reason I'm here talking to you. He's inspired me in lots of ways over the last few years. Having a child with a rare genetic disorder has shown me, my husband and our family a whole new level of love and acceptance. It's taught me to have true compassion and empathy for others. More than good manners and being kind, I feel it in my soul. Ford has taught us to slow down and not sweat the small stuff. I have much more important stuff that needs that space in my brain and my heart. That space that takes up the small stuff, it's now open for grief, heartbreak, anxiety, fear, loneliness, exhaustion, worry and some jealousy. These are the things that parents with children like Ford are sweating. There's a special kind of beauty and isolation in this world and I want to talk about both together.
I want others to see people like Ford and see them just as they are. My hope is that acceptance and inclusion will just be natural. Maybe it's as basic as figuring out where we can meet with his wheelchair or simply saying hello to someone that appears different than you instead of pretending not to look at them or averting your eyes so they don't see how nervous you may be. Actively not looking is not the polite thing to do. It contributes to why so many of us feel alone and unaccepted. It makes us feel invisible. I'm not saying to go out of your way to say hello to people with disabilities, but maybe if you did it would stop feeling weird or uncomfortable to exist alongside someone who is different than you. If a person comes within 10 feet of you, make eye contact and smile. If a person comes within 5 feet of you, make eye contact and say hi. Those acts are so simple and everyone feels better.
This morning when we were going to a physical therapy appointment, Ford was in his wheelchair and I was walking behind him. As he was heading through two big automatic sliding doors, three people wouldn't go through and hung back even after I waved them through and told them to go ahead. They didn't respond or look at me. They just stood there awkwardly. This sometimes makes me feel like I need to rush Ford along so that everyone is comfortable and gets along with their day and doesn’t feel weird, but I stop myself because he isn't in the way. Ford is learning and I have to give him the space to do that. People may think they're being kind in letting Ford go through first, but they're making it weird. All of the sudden, this lady came whizzing by in her electric wheelchair, she passes Ford and yells out "sweet wheels you have there man!" Ford loves when people talk to him. He pointed at her until she disappeared. Thank you to that woman. Let's all be like that woman.
In the small town I grew up in, I don't remember growing up alongside anyone like Ford. In high school, there was a boy that had some sort of a disability, but no one ever told me what it was and I never asked. He was walked through the hallways in between classes. For the most part, I think kids were nice to him. The only thing I know for sure is that they guys in his class would teach him bad words and everyone would get a big laugh when he repeated it. Teachers knew this was happening and they didn't stop it. That was only 15 years ago. As Ford's mom, when I think about that kid in school being walked in the hallways after all the other kids went to class, being included by his peers for a laugh, it makes me physically sick to my stomach and it makes me cry. I think about that kid a lot. I think about being Ford's mom, sending him off to school and I imagine that as his experience. We all failed that kid in school- me, his classmates and his teachers. We failed each other. I think about that boy's mom a lot. I asked an old friend from high school if she knows what happened to him and she said he has a job and is living in a group home in our nearby big city. Wow, that news warmed my heart. I think that mom is such a badass. She didn't have the internet on her side when her son was young.
Seattle is supposedly one of the most progressive cities in the world. You'd think the same issues I saw in my old high school almost two decades ago wouldn't be prevalent here, but you'd be wrong. Seattle, like everywhere, has a long way to go. I own a small salon in downtown and I walk about 5 blocks from the bus to my shop. I notice everything now and I can't help it. I notice when the sidewalk is broken, when there's not a ramp onto the street, when there's a sign on the sidewalk in the way, when there's a truck blocking access and which restaurants aren't accessible. I wonder how I didn't notice this stuff before because it's pretty consuming now.
I've been a waitress, a bartender and a hairstylist. I loved these jobs because I love getting to know people and finding a deeper level of connection. I like learning about what experiences people have lived through and how it's shaped them. Most of the closest friends I have were or are still customers or clients of mine. I practice to see the best in people, a gift and a challenge of mine. A lot of these people have helped me through some really difficult times and several have played a huge part in the start of this podcast. This podcast is a piece of my purpose.
What I've learned about the rare disease and disability communities since Ford is so different than what I thought I knew before. I want to help shine a light on the world so we can all navigate it together. This is a labor of love, my intentions are honest and real. I'm here to help myself and others to navigate and relate and have real, open conversations about our lives.
I'm Effie Parks and this is Once Upon a Gene, a podcast for the families and friends of individuals with rare disease or disabilities. Please share this podcast and leave a review wherever you listen to podcasts.
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