Rare Mom Madeline Cheney – The Rare Life Podcast
Fellow rare mom and podcast host, Madeline Cheney, is joining me for a chat today. Be sure to check out her podcast, The Rare Life Podcast. And don’t forget to subscribe!
Tell me about yourself and your family.
I am a stay at home mom to four-year-old Wendy, who is medically typical. Two year old Kimball has a very rare disorder. My husband and I live in Utah. When I’m not caring for my children, I devote my time to my podcast.
Tell me about Kimball’s diagnosis.
Kimball has a rare genetic mutation called achondroplasia punctata x-linked type 1, which is a type of skeletal dysplasia with only 125 known cases in the world. The condition affects his bones, he’s deaf and blind, has dwarfism, his spine is soft, has no nose bone and low muscle tone.
What aspect of Kimball’s most recent challenges are you grieving?
My main source of grief is how much he has to suffer and how unfair it is. It loops me back to when he was first diagnosed. The unfairness of everything breaks my heart as I watch him go through the challenges he faces. It loops me back to the first and subsequent diagnoses and resurfaces some of the same feelings. I love him more and more each day, which makes this more and more painful.
How do you manage your stress and emotional wellbeing?
I’ve learned a lot from other parents and my therapist to feel grief and lean into it rather than suppress it or push it down. I’ve learned that it’s easier to process things in the moment rather than process it later in the future and have to deal with it then.
What is the catalyst that makes you the mom that Kimball needs?
I’m better able to empathize in ways that I couldn’t before and I understand the gravity of not being able to understand other people’s experiences. Unlike my pursuit of being strong and trying to always portray that to others, I now know in the depth of my bones how strong I am because of the things I’ve gone through. That’s my main evolution. Now with upcoming challenges with Kimball, even when I feel weak, I know I’ll get through it and it’s valuable to know that about myself.
What do you want to leave listeners with?
Competition and comparison makes any journey so much worse. Don’t compare yourself or your situation and don’t isolate yourself because of it. I encourage you to work on that if you struggle with it. Don’t let that be a reason your don’t share your story because sharing will help with healing and connecting with other people.
LINKS AND RESOURCES MENTIONED
TUNE INTO THE ONCE UPON A GENE PODCAST
CONNECT WITH EFFIE PARKS