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PODCAST

The Rare Life

Madeline Cheney

This is the real, raw, and all the feels of loving a child with disabilities. Episodes feature parent-guests, professionals, and solo episodes with host Madeline Cheney. Their authentic conversations don’t shy away from the strong and mixed emotions that often accompany medically-complex parenting. Parents listen in to feel seen, validated, and receive much-needed solidarity. Professionals working with disabled people listen in to better understand what is often going on under the surface for a

kids & family parenting

All Episodes

00:51:19

115: Melanie Dimmitt’s Story | a Diagnosis Delivered...

The Rare Life ·

2023/02/23

Today, we have a very special guest, Melanie Dimmitt. Melanie’s son Arlo has cerebral palsy, which isn’t a rare disease, but so many listeners reached out to recommend Melanie’s book Special to me. After reading her journey of coming to terms with her son’s diagnosis and navigating her new life of medically-complex parenting, I knew we had to talk to her. Before Melanie received her son’s diagnosis, she was a little terrified of having a child with a disability. It wasn’t just that she was afraid of

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00:52:40

114: Grieving Our Children’s Intellectual...

The Rare Life ·

2023/02/16

Society’s values are slowly shifting away from a focus on physical beauty toward intellect instead. We’re taught that academic and intellectual achievement is so valuable, maybe even one of the most valuable things we can accomplish. On the surface, that might feel like a good thing, but where does that leave our children with intellectual disabilities? In today’s episode, Marci Dunning shares with us her experience of learning that her daughter Freya has an intellectual disability. At first, she

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00:45:54

113: Blenderized Diets for Tubies | The Life-changing...

The Rare Life ·

2023/02/09

For years, Cassie and her tube-fed daughter Eloise tried to accept that vomiting, pain, and hospitalization was just part of tubie life. After all, that’s what they kept hearing from many medical professionals when Eloise had difficulty tolerating formula after formula. But as Cassie discovered, highly processed formulas aren’t the only option available for many tube-fed kids. After working with Hilarie Dreyer, a registered dietitian who specializes in blenderized diets, Cassie was able to switch

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00:52:14

112: Abby’s Story | Skeletal Dysplasia, a Prenatal...

The Rare Life ·

2023/02/02

For the first part of Abby’s pregnancy with her son Jackson, everything was perfectly uneventful. But at her twenty-week ultrasound, her medical team discovered some unusual markers. This appointment set off a chain of visits, tests, and specialists that eventually ended in a diagnosis of a rare and life-threatening form of skeletal dysplasia called osteogenesis imperfecta. In this episode, Abby and her family were thrown into the world of medically complex caregiving and advocacy, which sometimes

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00:15:04

111: Season 7 Kickoff

The Rare Life ·

2023/01/26

We’re back for another season, and we’re focusing on disabilities and medical complexities again! We’ll cover managing symptoms, helpful organization hacks, trauma-versaries, grief and acceptance for our child’s disabilities, and more. For the last six seasons, we’ve been using the same pattern and order for planning episodes, and I’ve been really comfortable with that structure. BUT I want to give even more parents an opportunity to share their stories and their wisdom, so season 7 is going to flow

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00:45:00

110: When Your Child is Inpatient at the Hospital...

The Rare Life ·

2022/12/15

There’s not much that feels worse than getting stuck in a hospital during the holiday season or having to miss a special celebration due to appointments or illnesses. Of course, there’s the trauma of being in the hospital again, but it’s also lonely, isolating, and demoralizing to feel like everyone gets to celebrate except for your family. You might feel pressure to experience the holiday early or find ways to celebrate in the hospital – or you might be too exhausted and just skip the event

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00:43:16

109: Isolating at Home During Holiday Events to Avoid...

The Rare Life ·

2022/12/08

No one wants to spend the holidays feeling isolated or left out, but the reality for parents of medically complex/disabled children is that we sometimes have to skip events and gatherings for the safety of our kids. On top of that, we’re the ones stuck making the decision whether to stay home or go out, requesting accommodations and assurances to protect our kids, and trying to decipher if we’re “overreacting” out of anxiety or just being reasonably careful. In today’s episode, Amanda

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01:32:13

108: The Holidays + The Ways They Can be Tough for...

The Rare Life ·

2022/11/17

When you have a child with a disability or other medical complexity, the holidays can feel like a minefield, as trauma triggers, anxiety, and grief for what we wish the holidays could have been for our families lurk around every corner. And on top of that, having to manage schedules, special diets, gift expectations, and uncomfortable commentary from friends and family can be emotionally and physically draining. The season often leaves parents of disabled children feeling left out, over-worked –and

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00:50:31

107: Season 6 Finale episode w/ Brittany

The Rare Life ·

2022/11/10

Brittany Steitz is back for the Season 6 finale! For the first time ever, every episode in this season was sponsored, which meant that we were able to grow our team and I was able to branch out creatively to bring you an even better podcast episode each and every week. This episode was so fun as we reflected on how the podcast has grown this last season. In this episode, we listen to a short clip featuring snippets from every episode in Season 6. Then we’ve got three recorded voice messages from

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00:52:51

106: Respecting and Honoring Our Nonspeaking Children...

The Rare Life ·

2022/11/03

I think most of us have a vision of what our relationship with our children might look like when we first step into parenthood. We know what we want our kids to experience, how we hope to interact with them, and how we want to communicate with them to build a strong bond. But, as parents of children with disabilities, we also know that these visions don’t always play out. In the case of nonverbal children, we have to learn how to use communication devices and become incredibly attuned to body

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00:51:04

105: Brianna’s Story | Regression, Finding Purpose,...

The Rare Life ·

2022/10/27

After struggling with fertility issues for years, Brianna was overjoyed to finally be pregnant, carry the pregnancy to term, and bring home her sweet baby Isaac. As a nurse herself, she understood the risks and complications and possibilities for things that could go awry, but there were never any indications during birth or pregnancy that something was amiss with her son’s health until several months after he was born. After months of consultations, monitoring, blame from medical staff, and

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00:57:02

104: Tangible Ways to Support Parents of Disabled...

The Rare Life ·

2022/10/20

Having a child with a disability or rare disease can be a lonely experience, often in ways that parents never anticipated. Their lives have changed dramatically and the relationships they used to rely on might feel suddenly distant. Family and friends may want to reach out, but they don’t always know how to offer the support that is most helpful for parents. Their “encouraging” comments sometimes miss the mark and can cause even more heartache for the parents they are trying to help. Or, they might

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00:46:55

103: Instilling Body Image Resilience in Children...

The Rare Life ·

2022/10/13

Like so many of you, I worry about how to teach my son with disabilities to fully love and embrace all of himself—including and especially his disabilities that set him apart from his non-disabled peers. And I believe it starts with us. We need to accept and love our bodies exactly as they are—even the parts we think are not worthy of being seen. We need to model body image resilience for our children. In this episode, Dr. Lexie Kite, a leading expert in the field of body image resilience, shares

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00:39:05

102: Becoming a Single Medical Mom w/ Tiffany Pasillas

The Rare Life ·

2022/10/06

When Tiffany’s husband filed for divorce, she was 32 weeks pregnant with their daughter Aiyana they weren’t sure would survive to birth because of her diagnosis of trisomy 18. In this episode, she shares what it was like to navigate the following year inpatient at the hospital, co-parenting with a man she had very mixed feelings about. She also talks about what it was like to be discharged from the hospital with two daughters to care for without a house or job to go home to, and the ways she’s

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00:56:39

101: Tiffany’s Story | T18/Edward Syndrome +...

The Rare Life ·

2022/09/29

When Tiffany was told her unborn daughter was “incompatible with life” because of her trisomy 18/Edward Syndrome diagnosis, she was immediately pressured to terminate. After deciding to continue her pregnancy, Aiyana was born alive—beating the odds. And because of the T18 diagnosis, doctors refused to give her the life-saving procedures she needed. Tiffany then changed her care, in favor of a doctor who agreed to give her the procedure and save her life. In this episode, Tiffany tells what it's been

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00:42:09

100: Raising Awareness | Disabled People (and Their...

The Rare Life ·

2022/09/22

So often, we feel that as parents, we need to be raising awareness about issues relating to disability. Maybe we’re sharing our lives on social media in an effort to show that our child really isn’t that different from the next and deserves inclusion. Or perhaps we’re teaching about the importance of being an organ donor because our child wouldn’t be here today without generous donors. Or maybe we’re shouting the symptoms and definition of our child’s rare syndrome in the hopes that they’ll finally

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01:31:31

99: Family Planning When You Have a Medically-Complex...

The Rare Life ·

2022/09/15

When you have a child with a medical complexity or disability, so many things get flipped on their head. And one of those things is family planning. Something that may have seemed relatively simple and straightforward becomes muddled and complicated. We wonder—rightfully so—if we have the mental and physical capacity to care for an additional human being. And if we choose to move forward with adding to our family, how can we endure the anxiety that would likely flood us during a subsequent

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00:44:46

98: Siblings | Ways We Can Protect Our Glass Children...

The Rare Life ·

2022/09/08

Siblings of disabled children are often referred to as “glass children.” Glass because people tend to look right through them and focus on the sibling with disabilities. And because they appear a lot stronger than they are. Because they are, afterall, just kids. In this special topic episode, Melissa Schlemmer shares all about her incredible son Alexander and his big heart. She talks about ways she protects his relationship with his disabled brother Christopher by not accentuating their differences

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00:41:40

97: Melissa Schlemmer’s Story | A Rare Disorder...

The Rare Life ·

2022/09/01

When Melissa knew something was up with her infant-son Christopher nine years ago, she reassured herself that as long as his brain was ok, they would be ok. So, when his neurologist told her about his rare disorder and the way it affected his brain, everything crumbled around them. After years of navigating all the sub diagnoses that come along with his syndrome, Melissa has come to a place of radical acceptance of her son’s disabilities. In this episode, Melissa shares this and more. Links: Check

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00:40:40

96: “All We Want Is a Healthy Baby” | How This Feels...

The Rare Life ·

2022/08/25

We’ve probably all heard it before: When asked whether a parent is hoping their unborn baby is a boy or a girl, they reply sweetly, “all we want is a healthy baby.” To most people this seems like a valiant proclamation of unconditional love and indifference to the baby’s gender. But to parents of medically complex and admittedly very unhealthy babies, it can really pack a punch. In this solo episode, Madeline unpacks what emotions this often brings up for parents, drawing from her own experience as

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274 results

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