The Rare Life

Latest Episodes:

104: Tangible Ways to Support Parents of Disabled Children | A Message for Our Loved Ones Oct 20, 2022

Show notes

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 miss the mark and can cause even more heartache for the parents they are trying to help. Or, they might be so at a loss for how to offer support that they just stay away altogether.

It’s easy to find lists of things not to say and not to do for parents caring for children with rare diseases, but what about the ways that family and friends CAN offer support?

In this solo episode, Madeline shares suggestions from listeners about the kind of support they want from those close to them as they care for their children with disabilities. Parents of children with medical complexities need —and want— their people to stay in their lives, and these tips can help strengthen these relationships.

Links:
Check out Annette Moreau’s courses.
Follow me on Instagram.
Follow the Facebook page.
Donate to the podcast via Buy Me a Coffee.

A big, big thank you to everyone who contributed thoughts and suggestions to this episode:
Kenya Davis @sunflowers_sea
Catherine Hoffman @cathsheahoff
Grace Bongiovanni @grace.bongiovanni
Huang Hsin @becky812
Maddison Ward @maddisonjward
Michel-Anne Bridges @mrs.mabridges
Jenna @donotfeedwildlife
Shannon Read @mrs_read_15
Jill Jones @jilllatimer294
@jenangarita
Siobhan and Jamie @jamies_gdd_diary
Victoria Shaver @vicgs
Kate McGregor @kate_mcgregor_
Kate Rolfes @kate.rolfes
Krystal Hatch @mrs_katch
@linavilela
Sarah Harris @sarah_harris_insta
Katie Peterson @katiebpeterson
Chloe @chloerose1127
Marci Dunning @freyasluckyarm
Libby @libby.shidel
Karissa Taylor @the_advocating_mom
@jenangarita
Hailey @Growing_juniper
Rachael Carlucci @rachaelmcarlucci
Julianna Morasse @howlinghive
Kari Harbath @Kariandsloan
Tricia @triciajeanb
Ashley Garrison @ash.garrison

103: Instilling Body Image Resilience in Children with Disabilities w/ Dr. Lexie Kite Oct 13, 2022

Show notes

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 children.

In this episode, Dr. Lexie Kite, a leading expert in the field of body image resilience, shares ways that we can shift how we view and speak about our bodies in order to influence the ways our children view their own bodies.

Links:

Check out our lovely sponsor Bitsy Atwold Teaching Tools (Use code RARE10 to receive 10% off!)

Follow Bitsy Atwold on Instagram.

Purchase a copy of More Than a Body by Lexie and Lindsay Kite.

Access the audio versionof More Than a Body by Lexie and Lindsay Kite.

Follow Lexie and Lindsay Kite on Instagram.

Follow me on Instagram and enter the giveaway.

102: Becoming a Single Medical Mom w/ Tiffany Pasillas Oct 06, 2022

Show notes

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 the hospital with two daughters to care for without a house or job to go home to, and the ways she’s whittled time for self-care when everything is on her shoulders alone.

Links:

Functional Formularies (our awesome sponsor!):

Follow this link to check out Functional Formularies’ products and to receive 10% off your purchase. (Use code “rare10” if there are issues with the discount being applied)

Use this link for your clinician to request a free sample of Functional Formularies.

Follow Functional Formularieson Instagram.

Follow Functional Formularieson Facebook and join the giveaway this weekend!

Follow Tiffanyon 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 affiliate BetterHelp for online licensed therapy and receive 10% off.

101: Tiffany’s Story | T18/Edward Syndrome + Advocating for Her Daughter’s Right to Live Sep 29, 2022

Show notes

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 doctor who agreed to give her the procedure and save her life.

In this episode, Tiffany tells what it's been like to have to fight for her daughter to receive needed medical care. She also shares what it was like to go through a divorce in the weeks leading up to and following Aiyana’s chaotic birth, and ways she has learned to surrender the illusion of control.

Links:

Functional Formularies (our awesome sponsor!):

Follow this link to check out Functional Formularies’ products and to receive 10% off your purchase. (Use code “rare10” if there are issues with the discount being applied)

Use this link for your clinician to request a free sample of Functional Formularies.

Follow Functional Formularieson Instagram and join the giveaway!

Follow Functional Formularieson Facebook.

Read about the Boston Children’s study about blenderized diets.

Follow Tiffany on Instagram.

Follow me on Instagram.

Check out adorable photos of Tiffany + fam on the website.

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 affiliate BetterHelp for online licensed therapy.

100: Raising Awareness | Disabled People (and Their Parents) Do Not Owe Society Anything Sep 22, 2022

Show notes

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:

Wheel.Life.in.the.Wheel.World

Nina_Tame

99: Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins LMFT + 13 Special Guests Sep 15, 2022

Show notes

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

98: Siblings | Ways We Can Protect Our Glass Children w/ Melissa Schlemmer Sep 08, 2022

Show notes

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

Melissa (Our AMAZING guest!)

Trexo Robotics (our AMAZING sponsor!)

The Rare Life

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)

97: Melissa Schlemmer’s Story | A Rare Disorder Affecting the Brain + Radical Acceptance Sep 01, 2022

Show notes

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.

96: “All We Want Is a Healthy Baby” | How This Feels to Parents of Unhealthy Babies Aug 25, 2022

Show notes

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.

95: The Parable of the Pain Scale | How Bearing Witness to Our Children’s Suffering Calibrates Our Pain Scales to an Entirely Different Level w/ Libby Holley Aug 18, 2022

Show notes

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.