The Rare Life – Détails, épisodes et analyse

Nikole’s delivery for her daughter Chloe was... less than ideal for quite a few reasons.  Nikole’s health was in jeopardy, Chloe was delivered nearly two months early, and according to one especially rude NICU doctor, Chloe “looked funny.”

This difficult experience reached a crescendo when Nikole was given the news of Chloe’s rare diagnosis, Wolf Hirschhorn syndrome—which included some inaccurate information about the disease (like an inaccurate life span.)

But despite this traumatic start, Nikole and her family have learned to adjust, adapt, and help Chloe to thrive in the years since. In this episode, Nikole is sharing how she and her family created a team of medical staff they could trust despite some past bad experiences, how they celebrate each and every milestone for Chloe, and how they keep moving forward, as they are determined to never, ever give up on their daughter.

This episode is equal parts relatable and uplifting. You can’t miss it!
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Links:

Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners!

Join The Rare Life newsletter and never miss an update!

Fill out our contact form to join upcoming discussion groups!

Follow Nikole @martinfamilyshenanigans!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

It’s no secret that parenthood is expensive. But when it comes to parenting a medically complex kid, the dial is turned up to 100. Everything with an “accessible” label is marked up 10x. We have to make renovations to our homes and vehicles with little to no financial assistance. And that’s often on top of career and work changes that have made our finances tighter to begin with.

In this episode, I’m bringing back Alyssa Nutile and Amanda Griffith-Atkins to sort through the thoughts, feelings, and anxieties from this community about the financial aspect of this life. We cover many of the stressors, the guilt and shame associated with feeling like you can’t provide for your child, and some of the resources and routes other parents have used to ease some of the financial stress.

This episode touches on some deeply personal territory for many of us, but I think it’ll leave us all feeling less shame and loneliness. Let’s dive in!

Links:

Visit the ABLEnow website to learn how to open an account for your child!

Visit SupportNow to start a registry and share with your community.

Join The Rare Life newsletter and never miss an update!

Fill out our contact form to join upcoming discussion groups!

Follow Alyssa on Instagram @caffeinated_caregivers!

Follow Amanda on Instagram @amanda.griffith.atkins!

Follow us on Instagram @the_rare_life!

Listen to previous episodes with Alyssa:

Ep 170 on Hospitalizations

Ep 140 on Alyssa’s Story

Ep 125 on Traveling with Disabled Children

& on our recent season opener and finale episodes!

Listen to previous episodes with Amanda:

Ep 159 on Sharing the Mental Load

Ep 156 on Getting a Divorce

Ep 153 on Hurtful Things Loved Ones Say

Ep 147 on Sex and Disability Parenting

Ep 142 on If My Disabled Child Outlives Me

Ep 135 on Career and Family Roles

Ep 132 on Self-Care

Ep 131 on Chronic Stress

Ep 130 on Anticipatory Grief

Ep 99 on Family Planning

Ep 85 on Parental Identity

Ep 81 on Health Anxiety

& our holiday season eps: Being Hospitalized During Holidays - Isolating at Home During Holidays & Why Holidays Can Suck.

Donate to the podcast or Contact me about sponsoring an episode.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

It’s only been a year since we’ve heard from Maddison... but oh the things that can change in a year. Shortly after we initially recorded Maddison’s story, she and her husband separated. And the life that Maddison and her daughter knew before with a team of two parents working side by side and supporting each other, it just didn’t look the same anymore.

In this mini-episode, Maddison shares how she’s coped with the abrupt adjustment to single medical parenthood. She shares the parts that she’s found to be most difficult, what she still grieves, and the surprising bright spots she’s found despite the painful changes.

Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!

Links:

Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!

Listen to Ep 129: Maddison’s Story.

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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 get the funding needed to research a cure.

There are many causes to fight for and many reasons for doing so. But it’s important to remember that we are not obligated to raise awareness about anything. Becoming a parent to a child with a disability does not require it.

In this episode, I invite parents to evaluate their cause and their “why” against the question: “is this serving me? Is it serving my child?” Because at the end of the day, that’s what really matters.

Links:

Children’s book What Happened to You? by James Catchpole

Demystifying Disabilityby Emily Ladau

Ep. 85 w/ Emily Ladau and Amanda Griffith-Atkins

Ep. 23: Disability Advocacy w/ Jenny McLelland

Follow me on Instagam.

Disabled adults on Instagram whom I love learning from:

cathyreaywrites

EmilyLadau

Sitting_Pretty

DisabilityReframed

TheCatchpoles

Wheelchair_Rapunzel

Wheel.Life.in.the.Wheel.World

Nina_Tame

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 pregnancy? And further complicating matters still, what if we’re a carrier for our child’s condition and could pass it on to other children as well?
In this episode, Amanda Griffith-Atkins and I tackle these very reasonable concerns and include the perspective from 13 parents, each one with a different decision and reasoning behind it.

Links:
Relevant episodes to listen to:
-Ep. 19 and Ep. 20 w/ Kate Peterson
-Ep. 33 w/ Palliative Social Worker Orley Bills
-Ep. 22: It’s All My Fault (finding out I was a carrier for my son’s condition)
-Ep. 50: The Sibling Perspective w/ Katherine Acton
-Ep. 47: Siblings w/ Katie Taylor, CCLS
-Ep. 40: Wendy + the Sibling Experience
-Ep. 98: Siblings | Ways We Can Protect Our Glass Children w/ Melissa Schlemmer

Episodes with Amanda Griffith-Atkins:
-Ep. 85: Should A Child’s Disability be a part of Their Parent’s Identity? 
-Ep. 81: Health Anxiety 

Join this group of x-linked carriers called Remember the Girls 
Learn about genetic counselors
Find a genetic counselor

Connect with us on Instagram!
-Madeline Cheney (host) @The_Rare_Life
-Amanda Griffith-Atkins @Amanda.Griffith.Atkins
-Marci Dunning @FreyasLuckyArm 
-Maddison Ward @MaddisonJWard 
-Brea Rainey @thatonegirlbrea 
-Meg Dawley @Meg.Dawley
-Rachel Bennett: @rachglickb 
-Allison Wolf @AllisonHopes 
-Taylor @taylorhuss15
-Katie Peterson @KatiebPeterson 
-Caitlin Castro @SeedyCastro 
-Emma Bliss @Emma_Blissful 
-Thea @TheaMoshofsky 
-Marie Wood @chariskaieirene
-Karlita @KarlitaBWell23

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 and allowing them to simply be brothers. She also tells us of a tragedy that occurred in her mother’s family that has shaped the way she parents them.

Links:

Check out the Trexo Robotics website

Follow us on Instagram:

Melissa (Our AMAZING guest!)

Trexo Robotics (our AMAZING sponsor!)

The Rare Life

Follow us on Facebook:

Melissa (Our AMAZING guest!)

Trexo Robotics (our AMAZING sponsor!)

The Rare Life

Episodes to listen to next:

Ep. 40: Wendy + the Sibling Experience (a solo episode)

Ep. 47: Siblings w/ Katie Taylor, CCLS (with a childlife specialist)

Ep. 50: The Sibling Perspective w/ Katherine Acton (with an adult who grew up with a disabled sibling)

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 out NAPA Center and their resources.

Get info about NAPA Center’s new Chicago Clinic.

Fill out an interest form for NAPA Center's new Chicago clinic.

Listen to Ep. 77: To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way”

Follow Melissa on Instagram

Follow Melissa on Facebook

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 appointment day merch.

Check out our affiliate BetterHelp for online licensed therapy.

Access the transcript on the website here.

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 well as the input from listeners as submitted via Instagram.

Links:

Check out Worthy Brands website.

SeeWorthy eye patches on Amazon.

Listen to Ep. 60: Blindness.

Listen to the Preface episode.

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 appointment day merch.

Check out our sponsor BetterHelp for online licensed therapy.

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 a level we’ve never felt before as we become medical parents. Suddenly, what feels like an 8 for our friend may seem completely trivial—a 2 at best on our own personal pain scale. It can be hard to relate and empathize. Libby offers a perspective shift that allows us to remain connected despite this isolating difference in pain scales.

We also discuss the heartbreaking ways we see this exceptional pain tolerance in our children and how important it is to give our pain the gravity it deserves and to seek help.

Links:

A huge shoutout to our generous sponsor Rifton adaptive equipment!

Check out adorable photos of Libby, Lennon, and fam on the website.

Follow Libby on Instagram.

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 appointment day merch.

Check out our affiliate BetterHelp for online licensed therapy.

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 disabled sons. We chat about the isolation we feel in knowing our friends and families have no idea what we go through. We also talk about ways we can try to be just a little more vulnerable with them and how to tell our family and friends what kind of support we want and need.

Links:

A huge thank you to our generous sponsor Moog Medical!

Access Moog’s 24/7 live support for current users of their products like the Infinity Pump.

Follow Chelsea on Instagram.

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 appointment day merch.

Check out our affiliate BetterHelp for online licensed therapy.