The Rare Life

Finding out I’m a genetic carrier for my son’s syndrome of CDPX1 was a very tough pill to swallow; and it has a whole slew of implications for my life. It means I caused all of my son’s hugely challenging and life-threatening birth defects. And it also means that each of our children have a 50/50 chance of inheriting the unlucky genes. Listen to find out what it was like to receive this life-chang...

The rollercoaster of emotions that comes along with having a medically complex child is an inherent part of the “job”. Orley Bills, the Harley-loving social worker in the Rainbow Kids Pediatric Palliative Care team, spends his days supporting said parents while their children are hospitalized at Primary Children’s Hospital. Sometimes he does this by utilizing his training as a certified grief coun...

Mom Tameka Diaz followed her gut that something was off with her daughter Evely (and had suspicions confirmed) not once, not twice, but three times! In each instance, she faced resistance of medical professionals and felt like she was on trial to prove that her daughter deserved tests and screens. The first time, Evely’s profound heart failure was discovered. The second time, Evely received a slee...

Hear all the tea on The Rare Life podcast and celebrate the two-year birthday with us in this incredibly fun finale episode. For the first time ever, I am joined by a special guest to celebrate and reflect right along with me —newest TRL team member and my biggest hype woman Brittany Steitz. This episode is a whole lot of fun and a lot longer than typical finale episodes, too! In this episode, we...

There are many reasons we lose sleep as parents of children with disabilities. Maybe our child requires nighttime medical care or monitoring, and we don’t have nighttime nursing. Perhaps we feel guilty for sleeping while they’re not. Or we are unable to sleep while our minds buzz with a never-ending list of tasks of care, of past trauma, and fear of the future. In this episode, Jill shares what ke...

The pain we’ve experienced alongside our disabled children is often gaslit by others. Responses like “Oh, it’s not that bad…” and “At least….” Or “You should be grateful that….” are all forms of toxic positivity. Just like that, our pain and struggle are minimized. But the same can happen internally. When we’re struggling and our inner voice berates with “you’re so weak” and “it’s really not that...

Numbing out is a go-to coping mechanism for so many of us experiencing painful and stressful situations and emotions. And it’s not a bad thing! There are situations when we absolutely need to. But when we numb out excessively, we can become hardened and a bit of a shell of ourselves. And we deserve more. In this episode, mindfulness expert Anna Smyth explains the ins and outs of numbing out and ho...

Karley has always dealt with anxiety. But as is the case for many of us, her mental health took a turn for the worse when her daughter Nora was born. Because of the medical trauma that ensued for the whole family, she now deals with night terrors, panic attacks, and depression as well. In this episode, Karley shares how she copes with these things while caring for her daughters. She also shares th...

With more than 20 therapists and doctors for her two daughters, Karley spends almost every day at appointments with her two daughters. Her three-year-old Nora has two rare syndromes which come along with many sub-diagnoses including hydrocephalus. In this episode, Karley shares what it was like to receive a prenatal diagnosis and to play the waiting game until birth. She also shares the incredible...

Like most other parents, my sense of identity forever changed with the arrival of my disabled child. And in many ways, it’s helped me to embrace (at least on good days!) a lifestyle I used to resent. But I’ve noticed a pushback from the disability community in claiming our child’s disabilities as part of our own identities. So, of course, we had to examine this controversial and intimate topic wit...

Grief is something that most parents of disabled/medically complex children experience. And as Carrie shares in this episode, it never goes away. Instead, it shifts and evolves. She also explains how difficult it was to process her grief in the early days of her son’s life (15 years ago) when she was in survival mode and offers comfort and advice to those currently in that situation. We discuss wh...

Kim grew up in a very religious household. Her faith was relatively straightforward until she was thrown a major curveball—her daughter was born with a rare bone disorder. In this episode, Kim shares the anger towards and betrayal from God that she felt whilst she pled for a miracle for her daughter. Everything shifted for her when her daughter was involved in a critical accident, and she chose to...

Kim grew up in a very religious household. Her faith was relatively straightforward until she was thrown a major curveball—her daughter was born with a rare bone disorder. In this episode, Kim shares the anger towards and betrayal from God that she felt whilst she pled for a miracle for her daughter. Everything shifted for her when her daughter was involved in a critical accident, and she chose to...

When Kim’s picture-perfect pregnancy ended with a textbook delivery, she had no reason to expect that her newborn daughter would have a broken arm. After further imaging, they found she had fractured a rib while still in utero. This led to the suspected diagnosis of OI—a rare syndrome that results in extremely breakable bones. After they were discharged, little Julianne broke just about every limb...

So many of us have experienced trauma related to our children’s health and safety. So, it’s no wonder that we get thrown into a frenzy and our adrenaline pumps anytime our child gets sick or seems off in some way. Our bodies anticipate danger and additional traumatic events even if we logically know they are safe, or we don’t have enough information to conclude anything yet, or that situations are...

In this special Rare Disease Day episode, five parents share ways they have been changed by the rare disease journey, as experienced from the parent-perspective. They also share a few of their favorite things about their child. This episode is a celebration of the beauty of being parent to medically-complex children and the important lessons we pick up along the way. Links: Book “ Mighty Me ” by A...

When her son was young, Wendy grappled with the crushing feeling that she somehow caused her son’s disabilities and delays. The weight of that guilt and shame was unbearable, and it wasn’t until she saw herself in another mom struggling in similar ways that she discovered self-compassion. This aha moment changed her perspective for the better. Ammon was five years old then, and in the ten years th...

When Ammon was born, Wendy immediately knew something was different about him. He was baby no. 6, and her internal alarms were sounding. As he grew, more and more medical issues arose. In this episode, she shares the trauma she experienced when no one took her concerns seriously. She also tells us of the incredible story of finding his rare genetic syndrome diagnosis when he was five years old, an...

I am definitely one of them. Hearing other parents of children with disabilities say adages like this one has always made me squirm inside because it’s simply untrue to me. I would have Kimball another way—free from pain and suffering. But I’ve realized a trend—the parents saying this phrase were almost always parents to children with disabilities that do not cause pain or suffering in and of them...

As caregivers, our needs often get pushed to the side. Self-care can seem impossible. Which is why I love the simple act of recognizing our top four values. According to Moira Cleary, when we identify our top four values, we identify what we need most in our lives. These can vary wildly from person to person. Moira gives us the tools we need to do a little soul-searching and figure out just what t...

Over the two years Sarah and her husband Steve have been foster and adoptive parents, they have had to face intense feelings towards those who have harmed their children, and work through intense grief. In this episode, Sarah talks about her grieving process in regards to Zariah, ways she’s changed as a person because of her, and how she’s dealt with the difficult feelings towards her children’s b...

When Sarah was assigned to care for baby Zariah in the NICU, she fell in love with her. When Zariah’s birth parents neglected to visit or be involved, it was clear that Zariah would need a foster home, and eventual adoption. Sarah immediately knew she was meant to be her mother. Convincing her husband Steve was another story. Because of HIPAA laws, he wasn’t allowed to meet Zariah until they were...

It is SO good to be back! After an extra long break between seasons, I’m here with a brand-new season of episodes all centered around our personal journey as parents and caregivers. Obviously, we refer to our personal journeys frequently in virtually every episode, but Season 5 is a chance to really home in on and talk about what occurs for us at a very personal level while facing a very different...

For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th. But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’...

For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th. But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’...