The Rare Life

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’...

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’...

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’...

Another awesome season come and gone! This episode is in celebration and appreciation of the meaningful episodes, guests, and listeners of season 4. In this episode, I share a few behind-the-scenes of the season (with an exciting update!) and reminisce as we listen to the sixteen episodes condensed into a two-minute segment. I also share and respond to three audio submissions from parent-listeners...

NICU nurses do what we just can’t do for our babies—and that in and of itself is magical and special and makes me over-the-moon grateful whenever I think about it. And while I’m grateful for all nurses that care for my son, there are certainly nurses that are better at their jobs than others. Better at loving, better at caring, better at making the family’s experience as meaningful and positive as...

At only 2.5 years old, Ivy has already faced discrimination based on her disability. In this episode, her mom Vanessa McLeod shares what that’s been like for her to advocate to give her daughter everything she deserves in life. She talks about the ableism they’ve encountered, and her blazing confidence that Ivy will live a fulfilled life. She insists again and again that her daughter’s disability...

Ivy was formed without forearms or hands, which was discovered halfway through Vanessa’s pregnancy. Because of this, she was pressured by her medical team to terminate the pregnancy. The doctors insisted her daughter would have no quality of life and left Venessa wondering if terminating would be the selfless thing to do. When she refused the termination, zero medical support or resources were off...

As a total greenie in the IEP/504/educational advocacy realm, I was a bit surprised at the emotions that kept pounding in my heart. It was all familiar—the feeling of being a clueless parent in a new terrain as professionals used terms and procedures they assumed I understood. And of course, that familiar friend called grief. It was all there in my first ever eligibility meeting. But unlike the ea...

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...

Kali 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...

When Falesha was 37-weeks pregnant, her doctor found a few concerning birth defects in Cali that pointed to a rare syndrome called Pfeiffer Syndrome. From there, it was a flurry of preparation for her arrival. In this episode, Falesha shares how much their lives have changed over the 16 months of her life, and the ways she became an expert of her daughter’s syndrome to help her have the best care...

When your child’s development or health take a turn for the worse, its totally logical for the parents to struggle. Apathy, sadness, overwhelm, darkness, most parents have experienced this reaction at one time or another. But what about when their health takes a turn for the better? What about dropping off therapies and specialists? It seems like it would be a really straightforward response—happi...

Figuring out financial assistance and insurance was one of the most difficult things Gina faced after she was widowed with two young medically-complex sons. After months of back-and-forth, she was finally able to secure the life-sustaining equipment her children required and deserved. The difficulty in the system inspired her to join an organization dedicated to helping families like ours navigate...

Erica and Shaun learned quickly what works well during hospitalizations and what doesn’t during the 526 days they spent inpatient with their son Westly. After 526 days spent inpatient with their son Westly, Erica and her husband Shaun are alleged pros. They learned pretty quickly what works well—and what doesn’t. I met her a year ago when she sent me a copy of her Extended Stay Notebook, a spiral...

Westley was born with a rare case of Down syndrome—he was part of the 1% that faced several severe medical complications. Because of this, his mom Erica never fit in with the scores of other parents of children with Down syndrome. Add in a couple of rare sub-diagnoses, and it’s clear that Erica is certainly one of us. In this episode, Erica shares a bit about Westley’s 455-day hospital stay which...

Kimball’s confirmed blindness was one of the most torturous diagnoses to receive. And yet, I knew. I had known for months that he couldn’t see us. Our sliding glass door had his heart and his eyes. It had the smiles and the “goo”s far longer than a typical newborn. At 5 months, he hadn’t once looked at our faces. And the lack of visual connection was destroying my heart. Listen to hear what it was...

There are many challenging things about parenting a child with a disability. And among them, IEP meetings are one of the most daunting—they’re full of legal jargon and confusing processes. Catherine Whitcher has been guiding parents and schools in creating IEPs that our children reach their full potential for over twenty years, and in this episode, she gives us some of her best tips. Links: Find C...

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...

Evely was born without eyes, a rare condition called anophthalmia. When Tameka and her husband brought Evely home from the hospital, they thought blindness would be their one hurdle to navigate. They quickly learned this would not be the case; over the past five years of her life, she has been accumulating diagnosis after diagnosis of things like microcephaly and CHD. And although she is far from...

This season’s theme takes a little more explaining than the first three—but long story short, we’re cycling back through themes, starting with season 1’s theme! This was always the plan, and I’m super excited to recycle those themes with a new spin. In this episode, you will hear more about the theme, and extended sneak peeks into first four episodes of season 4: a parent story episode, special to...

It’s time to celebrate another fantastic season of fantastic episodes! This season was full of gains and setbacks, from the size of our TRL community doubling, to a ridiculous number of last-minute guest cancellations due to hospitalizations. It’s been a rollercoaster for all involved and I’m grateful to all that have supported, including each of my loyal listeners. In this episode, we get to list...

Erica has been on both sides of the road—she grew up with medical complexities and now mothers two children with medical complexities. In this episode, she shares how this unique perspective has influenced her parenting and given her greater compassion for the struggles her mom faced. She advises us in touchy subjects like ableism and oversharing while also emphasizing the importance of our imperf...

Have you ever seen another child and thought, “Man. If only my child had that diagnosis. Things would be so much easier because…”? We have too. It’s a totally ridiculous thing to feel jealousy over, but it’s something our brains do, nonetheless. Whether it’s the plethora of existing research, the resources available, or the name that most people know, there seems to be a lot to envy when it comes...