A holiday catch-up with Madeline Cheney

The Rare Life host on the bitter-sweetness of nostalgia, her most popular podcast episode and why she’s no longer her target audience.

Madeline Cheney’s “brain is fried” from the last-minute flurry of tasks leading up to Christmas. But as someone whose version of parenthood breaks the mould, The Rare Life podcaster relishes the ordinariness of searching for batteries – and watching her kids, Wendy and Kimball, slide down the stairs on a makeshift sled.

Soon after her youngest, Kimball, was diagnosed with a rare genetic condition, Madeline started recording conversational episodes with parent carers and professionals in the disability space. Her chats with this cohort are candid, comforting – and cut to the chase of what’s keeping parents of children with disability or medical complexity awake at night.

Several years, 148 episodes and eight seasons later, we’ve caught this Utah local in a new, exciting phase of her work and home life. Madeline reflects on how far she’s come and the big conversations in her community.

How is the holiday season shaping up for your family?

It’s been really great. I mean, my brain is kind of fried from a day of last-minute things, like needing batteries for the remote control car. But I’m just enjoying the magic of holidays with a five-year-old and a seven-year-old, because I think that’s the sweet spot. They understand it enough to be really excited, but they’re still very into anything we’re doing. It’s just peak excitement.

You’ve been checking in with your community of listeners by re-airing episodes like, ‘How to navigate the holidays and the difficult emotions and situations that arise for disability parents.’ What are some of the challenges that parent carers can come up against at this time of year?

I think the number one thing is grief being stirred up. My dad passed away during Christmas time six years ago and I think that experience really showed me how triggering holidays can be. Because it’s the same music, it’s the same smells. Everything built around holidays is meant to make you nostalgic and remember past holidays. It’s like a time capsule.

It can be a very triggering time of year, especially if something happened medically with your child. A lot of kids are in and out of the hospital around this time of year because of flu season and all the viruses going around. But then also, like I said, it makes everyone nostalgic. You think about when you were a kid and it brings back a lot of the expectations around how we pictured parenthood being in general – especially what parenthood would be at Christmas.

Most of us didn’t picture shopping for baby toys for our 10-year-old. I think things like that are really difficult and parents have also talked about their kids not having any concept of holidays. They don’t notice all the things that they’re doing to try to make this time special. That’s really difficult.

It’s enormously helpful that you raise a broad range of experiences like this through your podcast and community – even when they aren't necessarily reflected in how you and your family experience ‘rare’ life. How are Kimball and Wendy getting on these days?

Their sibling relationship is just wonderfully typical, which is like something I longed for, for so long. Wendy really struggled with Kimball. He was three before they really started having some positive experiences. And people would be like, “Oh, they’re siblings. It’s normal to fight.” And I was like, “I know. I have seven brothers and sisters. I get that.” But there were no positive interactions happening there. She just didn’t like him!

But today, they got the kitchen mat from under the sink and were sledding down the stairs on it, giggling and having so much fun together. I will handle all the fighting they do because, nowadays, they also have these moments. It’s so wonderful.

Let’s rewind a bit. Can you tell me how you remember feeling about the prospect of raising a child with a rare condition compared to how you feel about the reality of that now?

When we found out that Kimball would be disabled, I mean, that whole life – not just like the life I pictured for him, but like the life that I pictured for me – my whole future felt like it shattered and was being rebuilt into something that was going to be hard and full of heartbreak.

It’s interesting because, in a lot of ways, I’m glad I didn't know how hard it would be. The first few years were so hard. More than I could have imagined, because I didn't have any precedent for it. This medical stuff and being in and out of the hospital all the time, and trying to figure out how to take care of him was so different from taking care of Wendy.

When you have a non-disabled child first and then the medically complex child, it’s just so different. I was keenly aware of how things are ‘supposed’ to be. Like, ‘oh no, we’re not supposed to be in the hospital for the first few weeks after he’s born’. And ‘it shouldn't be this hard to feed him’, just all the different things.

I have this very vivid memory, too, of when Kimball was around nine months old and we just kept getting new diagnoses. We found out he was blind as well as deaf and I was like, your life just sucks. Your life is so hard. I just hadn’t really seen him have any joy in his life to that point. I was like, this is so unfair to him, and I pictured that being his whole life. But that has not been the case.

He started showing more and more joy and enjoying life. We were very fortunate that he stabilised, medically. Those challenges started kind of tapering off and calming down – and I was able to find my footing with my mental health. As I saw that joy emerge and his personality come out, I was like, we're going to be okay because even if it continues being really hard, there’s joy too. Nowadays, he is just the happiest kid.

Aside from seeing Kimball enjoying life, how did you find your footing with your mental health?

Therapy. It was so life-changing. I mean that with all my heart, it was life-changing! I did EMDR [eye movement desensitisation and reprocessing] to target traumatic memories relating to Kimball, and so that was so helpful in bringing myself out of this fight or flight, wounded, traumatised version of myself.

I just happened to land with this wonderful therapist and have since learned that not all therapists are created equal, and that some people have pretty horrible experiences with therapists that are not great. So I will throw that disclaimer and that acknowledgement out there. I happened to be very fortunate in the type of therapist I had and in having access to therapy. That really was the biggest game-changer.

Once I was able to find the stabilisation that brought me healing from my wounds that were still very open and raw, that’s when I started thinking, I want to do something to help other parents.

So came The Rare Life. Why did you go beyond just connecting with other parents, yourself, to creating a podcast?

Well, you know what’s funny, I hadn’t connected. That was part of it. I was so lonely – and I knew I wasn’t the only one that was lonely. So I thought, I’m going to make this thing so that we can connect and have this community. I was inspired by the connections I saw other people having in other communities.

We thought Kimball had Down syndrome at first – that was the first tentative diagnosis when I was pregnant with him – just long enough for me to join the Facebook groups and see this bustling community. Then that was ripped out from under me when we were told, “Oh no, it’s something really, really rare”.

So I needed to create a community for all the misfits – the people who don't have the bustling communities of bigger diagnoses.

You traverse some emotionally-charged territory on the pod. Things like life-limiting conditions and child loss, and questions a lot of us grapple with like, ‘what if my disabled child outlives me?’ How does it feel to keep digging into issues like this?

I guess with the darker, heavier topics, I understand how comforting it is to hear someone talk about something that you relate to. Something that you haven't heard other people talk about very much. It’s really hard and heavy stuff, but the load is lightened by being able to get it out there.

Also there’s the formatting of the episodes. I try to pattern it on therapy, because therapy was so effective for me. So I really am trying to give it a therapy-ish type of feeling where it's like, we're digging out these wounds and trying to clean them up a bit. It’s not comfortable and it’s not stuff we really want to think or talk about, but then afterwards, there’s relief. Okay, now I can move forward without it festering as much.

The Rare Life recently became a not-for-profit organisation. How are things different now?

It’s given it a separation from me, which has actually been really helpful. There weren't enough boundaries there between me and the podcast. It almost felt like – and in some ways, it still does – a child or a part of me, instead of like a thing that I work for. I think part of that is because I did it without compensation or childcare for a long time, so I would just do it in every spare moment I could find. I was working on it constantly and I was thinking about it constantly. I wasn’t really present with my kids. I felt like it was taking over my life.

Now there’s a mental separation where I’m like, this is like The Rare Life, the entity. It feels like I go to work in my home office and I’m in work mode and then I can be in mum mode. Those are two separate things and that feels so good. Part of that also is having a board of directors. We have meetings, we have a budget, and it's not just me making all the decisions anymore. So again, it feels like this separateness that really needed to happen.

I’ve also gotten better and more fine-tuned at deciding on episode topics and how to go about them in a way that makes them as relatable as possible – and not just to the rare community, but like to anyone who has kids that are disabled or medically complex. And I’ve had enough flops in the past to know that no, we are not going that way. Something might be an interesting topic to me personally, but that’s not what they want.

Those flops have been a good wake-up call to be like, I’m no longer my target audience. I’m not catering towards what I necessarily think is interesting now, but more of what Madeline would have thought was interesting in the first couple of years. That’s where I’m staying.

On that – what’s the most popular topic you’ve covered to date?

The most popular one by far is Episode 99, that’s all about family planning. We tried to get points of view from all the all across the board, from doing IVF to preventing passing on a gene if you’re a carrier, to “we’re one and done, there’s no way we’d have more kids”, to “we’re not sure”, to “we did have more kids after our disabled child and we’re so happy we did”. I love that one.

As one of eight siblings yourself, how does the topic of family planning land with you, personally?

It’s definitely been a huge part of our journey with Kimball, because I’m a carrier for his condition. It’s kind of complicated but, basically, boys that I have, have a 50/50 chance of having the syndrome. For four years we’d been trying to conceive naturally for a third. I was like, we’re just going to accept whatever child we get, like we did with Kimball. It took a very big mental shift and a lot of therapy to get to that point, where I was okay with whatever happens.

After having six miscarriages, finally I decided to do IVF with genetic testing. This was so off-putting to me because if we had done IVF before, then we would have skipped over Kimball. Picking embryos that don’t have that gene felt icky. But I finally was like, I don’t want to have a baby that dies and we’re just not having success with having a baby naturally.

So we went down that route for a year-and-a-half of me dragging my feet, because I just really, really did not want to do it. And then recently I was in therapy and realised, I’m done.

I've got these two beautiful children. It was Halloween and I was basking in the process of getting them ready in their costumes. I love our schedule where they’re at school all day, I work, and then they come home and then we’re all together. I don’t want to do IVF and I just want the freedom to move on from this.

Then five days later, I found out that my insurance wouldn’t cover any IVF. I was so grateful that we had those days to start processing this decision – and then for the decision to be made for us, instead of the other way around.

It’s crazy the way that these diagnoses can put their fingers in so many areas of your life that you wouldn’t have thought of if you hadn’t had a disabled child. I thought we’d have four kids, but now we’re having two. My whole life is so different from how I would have pictured it before – and that’s not always bad.

I wouldn’t have this community and my podcast and all these things and experiences if it weren't for Kimball. And so I’m excited to kind of see what doors are open to us because of that door being closed, even though I wanted that door. Now there’s other stuff in our future and I'm feeling a lot more optimistic than I think I would have without that experience and that lesson I learned with Kimball.

What advice do you have for people who are new to parenting a child with disability or complex medical needs?

I recommend finding other parents in a similar situation as fast as humanly possible. I went way too long. I felt so isolated and that just makes traumatic things so much worse. Then I would also say to just be patient with yourself and show yourself as much self-compassion as you possibly can through the process.

Understand that we all really, really struggle at the beginning. It’s really helpful to be reading about it or hearing it, in books or podcasts, just to understand that you’re not a bad parent for struggling. You’re not a weak person for struggling. You’re going to struggle and then you will come out the other side.

It may take longer than you want – I can’t guarantee any kind of timeline – but you will come out the other side of it and find your footing.

Follow Madeline’s story on her Instagram and Facebook accounts. Find The Rare Life on your favourite podcasts platform.

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