The Rare Life

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 o...

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 “...

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 physi...

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...

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...

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 mo...

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...

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 chil...

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 th...

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 doct...

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...

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 addi...

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 sh...

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 rad...

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 un healthy babies, it can really pack a punch. In this solo epis...

We are often asked to rate our pain on a scale of 1-10 for medical professionals. Sometimes for ourselves, other times for our children. And it is often so hard to know what number to give our pain. In this episode, mom Libby Holley shares how this pain scale can also be used to rate our emotional pain, and the ways it calibrates according to our life experiences. So many of us experience pain on...

When receiving a diagnosis for your child—or dealing with medical complications—it can feel like you’re suddenly thrust into a separate world than your family and friends. And this can be super distressing and disorienting at a time you need them most. In this episode, Chelsea shares how her relationship with her family and friends has been impacted by the different life she leads with her disable...

When her 6-year-old son Jace was born, they quickly recognized how difficult it was for him to breathe. A NICU stay, rare diagnosis, several intense surgeries, and 4 years later, they welcomed their second son Emmerson to the family. Once again, they were facing difficulty breathing, a NICU stay, and surgeries all caused by the same rare condition their older son has. In this episode, Chelsea tell...

We’re back with brand-new episodes of Season 6! In this short and sweet episode, host Madeline Cheney introduces the theme of the upcoming season and gives sneak peeks into the first four episodes of Season 6. Links: Follow me on Instagram. Follow the Facebook page . Join the Facebook group Parents of Children with Rare Conditions . Donate to the podcast via Buy Me a Coffee. Check out our appointm...

Not every twin has a living sibling—and Lily is an example of this tragic phenomenon. Her sister, Autumn, passed away at 24-weeks gestation, and she was born a few days later. In this episode, mom Jess shares the pain of losing a child and of the struggles that Lily has had because of her premature birth. Lily has a tracheostomy, is G-tube fed, and has damaged lungs due to her intubation during he...

For many parents, the NICU is an initiation into the medically complex world. Medical terminology is thrown around with assumed understanding, and tubes and cords protrude their precious infant. Beyond that, the emotional rollercoaster endured pushes many parents past their limits—and yet here we are. In this solo episode, I share a bit about what Kimball’s NICU experience was for us, with memorie...

Effie knew something was “off” with Ford from the day he was born, four years ago. After four months of being blown off by his pediatrician, Ford was admitted to the children’s hospital where he was analyzed and given an official (and extremely rare) diagnosis. Effie was completely blindsided and crushed. In this episode, Effie shares this experience of receiving Ford’s diagnosis. We also chat abo...

Although we often only see them for a brief 20-minutes at a time, our children’s doctors play a huge part in our children’s health and well-being. And depending on their bedside manner, we assume we know how much they care. In this episode with Dr. Dominic Moore, chief of palliative care at the local children’s hospital, gives us insights into how much our children’s providers really care. He shar...

The parenting experience with a child with medical complexities can feel worlds away from those around us. There are so many aspects that no one knows or sees. In this episode, Anna Brown shares three of her infamous “Confessions of a special-needs mama” that she has a reputation for on Instagram. We unpack three of her—and her followers’—favorites: 1. I am not stronger than you. 2. What happens w...

Cali relies on her trach and feeding tube for life. And as most parents with children who are dependent on life-sustaining equipment, Falesha both loves and resents it. Our children would not be alive today without them, and yet we still can feel annoyed and resentful towards the hassle and fears they bring. In this fun episode, Falesha advises NICU parents to take training seriously, shares both...