The woman behind the The Rare Life podcast

Who is Madeline Cheney the woman, not the Mum?

I super love doing Zumba and yoga. I’m not very good at leisure…My favorite ways to be close to those I love is working side by side on a project or duking it out in a boardgame. So, I guess I just love being productive (or faking it hence the games). In the last year, that has translated over to creating my beloved podcast The Rare Life. I’ve poured every ounce of my passion into this and it’s pushed me past many limits I once held. It’s really been like having a baby—tons of work but super rewarding and full of love. And blood, sweat, and tears. And new, dear friends. Yes, it’s been AMAZING. I adore a good historical fiction or self-help book (preferably read during my nightly bubble baths).

Who are your children and what is one thing about each of them you adore?

Wendy is our spunky 5 year old. She is medically “typical” and a diehard Peter Pan fan. Her intellect is frightening (I swear she’s smarter and Juston and me!), and she’s earned the nickname Wendy Pretendy. Guess how. 😉

Kimball is 2.5 years old and is so very resilient. He adores any and all things soft. My favorite part of the day with him is at bedtime when he leans in close and lets me cuddle him as I sing. Hugs are his favorite and he really is the sweetest.

What is one thing about being a Mum that drives you bonkers?

One of the very hardest parts of being a mom has been Wendy and Kimball’s relationship--it’s been rocky from day 1. Wendy was booted from her only-child status and attention with grandeur as Kimball arrived with huge medical issues and endless therapy and medical appointments. They’re relationship began to develop when Kimball was about 18 months old. Previous to that, there was very little love or affection between the two. I expected a sweet closeness between them, and seeing his older sister hit and attack Kimball because she was hurting inside was almost more than I could bear. But since then, they’ve made huge progress and I can see a friendship starting to grow. Every moment of playtime they share is a miracle and makes me the happiest person in the world.

Can you tell us about Kimball and his medical complexities?

Kimball is our little rarity, the one who inspired my podcast. He has QUITE the list of medical issues/birth defects—he is technically deafblind, with moderately severe deafness in both ears and cute itty bitty hearing aids (which he adores!). His blindness (due to optic-nerve hypoplasia) is progressively improving! He also has dwarfism. His cervical spine was malformed, and he is always in danger of compression (which would paralyze or kill him if he falls just so). He lacks a nose bone which means his nasal airway is extremely restricted. He’s only JUST escaped a trach. He also has low muscle-tone and is a G-tube grad. He has many therapists and specialists and is dearly loved by all.

How has becoming a Mum of a medically complex babe changed you?

Witnessing Kimball’s struggle with his body—and keeping him alive and well—has been the hardest thing I’ve experienced. It’s pushed me past my breaking point many times and I’ve never felt so weak. Especially in the first year and a half of his life, it was all I could do to hang on and survive. The learning curve was cruel. And yet, to my surprise, I’ve been able to look back and see the beauty it’s brought to our lives. As many other parents have experienced, I feel an inner strength like none other. The resilience I feel in knowing I can survive truly agonizing events is empowering. And my love has expanded beyond what it ever was previous to Kimball’s arrival. While I would never ask for this monumental burden on Kimball, my family, and me, I can’t help but feel gratitude for who I am today because of it.

You and your hubby are very much in love. How have you managed to continue to nurture your relationship since you became parents?

My husband Juston and I are closer than ever before because of the hardships we’ve weathered together. I think this in large part because I feel safe in sharing my deepest and darkest feelings and thoughts. That has made all the difference! All my emotions are listened to and validated. My husband is phenomenal at holding me and just listening. He is my greatest confidant and I feel we can get through anything because of that.

You love Zumba, how important do you think it is for Mum’s to include their needs in the family routine and how do you manage to do this?

I adore doing things for myself. I learned very quickly that caring for my son demanded more of me than the average child and I therefore needed to give myself more care than I would need otherwise. Pre-COVID, I attended Zumba exercise classes a couple times a week. During the first year and a half of my son’s life, my husband and I joked that it was my therapy. In reality, I should have been attending actual therapy (which I did later on), but the weeks that I didn’t make it to class, I felt in a fog of overwhelm and depression. Attending those classes twice a week made all the difference in my emotional survival. It was the one thing I did for myself that bettered my emotional health. I’ve come a long way since that time, and take a nightly bubble bath as a part of my self-care. I often read a book as I soak. It’s a nearly free practice that makes me feel luxurious and very taken care of. During the days of giving, giving, giving, I look forward to that me-time that takes no more than 20-30 minutes but is so relaxing and feels symbolic to the care I inherently deserve because I am a human being.