The Rare Life

Latest Episodes:

61: The Story of Westley Aug 26, 2021

Show notes

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 ended with a tough decision to switch him to comfort care and bring him home to spend the rest of his life cuddling and spending time with his three older brothers and parents. She also opens up about the complex grief she has been dealing with since his passing a few months ago, that brought both heartbreak and relief.

Links:

Check out pics of Erica + fam on the website.

Follow Erica on Instagram.

Follow me on Instagram.

60: Blindness Aug 19, 2021

Show notes

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 like to have this fear confirmed at a time I was barely holding it together with everything else that we were dealing with. And learn what unexpected outcome and emotions have come with time.

Links:

Answer the Question of the Month

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Listen to Ep. 5: A List of Diagnoses

Listen to Ep. 10: The Story of Sloan

Listen to Ep. 27: The Story of Gilbert

Listen to Ep. 44: Deafness

59: Educational Advocacy + IEPs w/ Catherine Whitcher, M.Ed Aug 12, 2021

Show notes

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 Catherine and her podcast here:

Website: www.catherinewhitcher.com

Facebook: www.facebook.com/catherinewhitcher

Instagram: www.instagram.com/catherinewhitcher

Podcast: www.catherinewhitcher.com/podcast

YouTube: www.youtube.com/catherinewhitcher

Find Madeline on Instagram and Facebook.

You can also listen on my website, as well as see photos for parent episodes, request transcripts, make comments, answer the Question of the Month, and contact me.

58: Medical Advocacy w/ Tameka Diaz Aug 05, 2021

Show notes

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 sleep study after much resistance, and found she had severe sleep apnea and required surgeries and machines to help her breathe at night. And most recently, they found epilepsy after another round of fighting doctors to give her daughter the tests to look into her concerns.

Because of these experiences, Tameka is passionate in empowering other parents to follow our gut and never stop fighting for them. In this episode, she shares each of these three experiences and gives us advice on fighting for our own medically-complex children. She also speaks to the emotional breaking point she hit from all the stress and the necessity for caring for ourselves, too.

Links:

Find Tameka on Instagram @thediazgirls.

Find me on Instagram @the_rare_life.

Listen to Ep. 24: Disability Advocacy w/ Jenny McLelland.

57: The Story of Evely Jul 29, 2021

Show notes

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 lacking in the medical diagnosis department, she is considered undiagnosed because she has no genetic syndrome to link it all together and give them an idea of what to look out for to keep her safe and healthy.

In this episode, Tameka shares what that has been like, as well as the ways that she is perfectly suited to be Evely’s mother, and the huge impact the pandemic has had on her mental health.

Related episodes: (you might also be interested in:)

Episode 5: A List of Diagnoses

Links:

Follow Tameka on Instagram @thediazgirls.

Follow Madeline on Instagram @the_rare_life.

Check out podcast merch.

Find photos of Tameka’s family on the website.

56: Season 4 Kickoff Jul 22, 2021

Show notes

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 topic episode, professional episode, and my solo episode. This season is another amazing one and I’m so excited to kick it off with you!

55: Season 3 Finale Jul 08, 2021

Show notes

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 listen to brief clips from each episode of season 3. We also hear from three listeners about what they learned from this season and what episode impacted them the most.

Join us in two weeks for season 4’s kickoff episode as I introduce the new theme and we get an extended sneak peek into the first four episodes coming your way.

Links:

Go catch up with Season 3’s episodes on the website.

Let’s be buds on Instagram.

Never miss an episode and follow TRL on Facebook.

54: Disabled Adult Perspective w/Erica Stearns Jul 01, 2021

Show notes

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 imperfect love for our children. This episode is all about the parent-child relationship and celebrates that unconditional love and all the efforts we make on their behalf.

You might also like:

Ep. 50: The Sibling Perspective w/ Katherine Acton INSERT LINK

Links:

BetterHelp Counseling affiliate link.

Check out and answer the Question of the Month.

See photos of Erica and family.

Check out Erica’s podcast Atypical Truth.

Follow Erica’s podcast on Facebook.

Follow Ericaand Atypical Truth on Instagram.

Follow Madelineon Instagram.

Ep. 34: Season 2 Finale.

Ep. 50: The Sibling Perspective w/Katherine Acton.

A few of my favorite disabled adults to follow on IG:

@ableismistrash

@wheelchair_rapunzel

@crutches_and_spice

@nina_tame

@wheel.life.in.the.wheel.world

@mikholmgren_inspiring_others

@open_future_learning

@riizzyray

@mumsonaroll

@karniliddell

@wheelchair_rapunzel

@shaneburcaw

@thecatchpoles

@lexxachexx

53: Diagnosis Jealousy w/ Kara Ryska Jun 24, 2021

Show notes

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 to more common diagnoses.

In this episode, Kara examines this and other strange things our brains do in response to trauma with her life coach lens. We also conclude that the antidote to this isolating mindset is finding other parents who we can relate with on other levels.

Links:

Check out Kara’s podcast and coaching program.

Follow Kara on Instagram.

Join the Facebook group Parents of Children with Rare Conditions.

Check out my website for more details about this episode.

52: The Story of Levi Jun 17, 2021

Show notes

When Levi was only two years old, a brain tumor was discovered. His parents brought him into the hospital for testing after he was inexplicably sick for several weeks. In this episode, mom Kara shares what it was like to get that life-shattering news and to send her toddler off into intensive surgery to remove the mass.

Although the surgery was life-saving, it had its own major repercussions for Levi and his body’s functionality. Even now ten years post-op, Levi requires medications and interventions to keep him alive and well.

Links:

Kara’s coaching: https://www.kararyska.com/

Kara’s podcast: The Special Needs Mom Podcast

Follow Kara on Instagram: @kararyska

Follow me on Instagram: @the_rare_life

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