The Rare Life

Latest Episodes:

83: An Evolution of Faith w/ Kimberly Arnold, Part 2 Mar 24, 2022

Show notes

Kim grew up in a very religious household. Her faith was relatively straightforward until she was thrown a major curveball—her daughter was born with a rare bone disorder.

In this episode, Kim shares the anger towards and betrayal from God that she felt whilst she pled for a miracle for her daughter. Everything shifted for her when her daughter was involved in a critical accident, and she chose to place her daughter in His hands, regardless of the outcome.

This episode is divided into two parts. This is part 2.

Links:

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Join the Facebook group Parents of Children with Rare Conditions.

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83: An Evolution of Faith w/ Kim Arnold, Part 1 Mar 17, 2022

Show notes

Kim grew up in a very religious household. Her faith was relatively straightforward until she was thrown a major curveball—her daughter was born with a rare bone disorder.

This episode is divided into two parts. This is part 1.

Links:

Check out our sponsor BetterHelp for online licensed therapy.

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.

82: Kim's Story | Hard-Earned Awe, Mothering a Glass Doll, and a Brand-New Marriage Put to the Test Mar 10, 2022

Show notes

When Kim’s picture-perfect pregnancy ended with a textbook delivery, she had no reason to expect that her newborn daughter would have a broken arm. After further imaging, they found she had fractured a rib while still in utero. This led to the suspected diagnosis of OI—a rare syndrome that results in extremely breakable bones. After they were discharged, little Julianne broke just about every limb. Kim and her husband were reeling with the unexpected medical journey they were on.

In this episode, Kim shares what it was like to endure the learning curve during the first several months of her daughter’s life. She also talks about the awesome things that have come because of her daughter’s diagnosis, and the ways that her brand-new marriage was affected.

Links:

Follow Kim on Instagram

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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.

81: Health Anxiety w/ Amanda Griffith-Atkins, LMFT Mar 03, 2022

Show notes

So many of us have experienced trauma related to our children’s health and safety. So, it’s no wonder that we get thrown into a frenzy and our adrenaline pumps anytime our child gets sick or seems off in some way. Our bodies anticipate danger and additional traumatic events even if we logically know they are safe, or we don’t have enough information to conclude anything yet, or that situations are different now.

In this episode, rare mom and LMFT Amanda Griffith-Atkins and I discuss ways that we have experienced health anxiety as well as what is happening on a psychological level. We also talk about the similar stress-response we experience in anticipation for specialist appointments. She shares ways we can cope with these trauma responses and teaches us to give ourselves generous helpings of self-compassion.

Links:

Check out our sponsor Aeroflow Urology for incontinence supplies.

Follow Amanda’s Instagram account.

Check out Amanda’s therapist directory.

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Check out our sponsor BetterHelp for online licensed therapy.

80: Celebrating Our Children + Our Growth w/ Lexie Emory, Roya Malaekeh, Analy Navarro, Heather Cox, and Rayel Lockhart Feb 24, 2022

Show notes

In this special Rare Disease Day episode, five parents share ways they have been changed by the rare disease journey, as experienced from the parent-perspective. They also share a few of their favorite things about their child.

This episode is a celebration of the beauty of being parent to medically-complex children and the important lessons we pick up along the way.

Links:

Book “Mighty Me” by Analy Navarro

Book “Special” by Melanie Dimmitt

Join the Facebook group Parents of Children with Rare Conditions.

Rayel Lockhart on Instagram: https://www.instagram.com/itsalockhartlife/

Lexie Emory on Instagram: https://www.instagram.com/lexie_be_cheesin/

Heather Cox on Instagram: https://www.instagram.com/ariannasarmy1/

Analy Navarro on Instagram: https://www.instagram.com/the_a_navarro/

Roya Malaekeh on Instagram: https://www.instagram.com/the_destroya/

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Donate to the podcast via Buy Me a Coffee.

Check out our appointment day merch.

Check out our sponsor BetterHelp for online licensed therapy.

79: Debilitating Guilt + the ‘You Break It, You Fix It’ Mentality w/ Wendy Hair Feb 17, 2022

Show notes

When her son was young, Wendy grappled with the crushing feeling that she somehow caused her son’s disabilities and delays. The weight of that guilt and shame was unbearable, and it wasn’t until she saw herself in another mom struggling in similar ways that she discovered self-compassion. This aha moment changed her perspective for the better.

Ammon was five years old then, and in the ten years that’s past since that point, she’s developed a much healthier view of her relationship with Ammon and her relationship with guilt.

In this episode she shares what that was like for her, and ways that she has been able to rise above the guilt and shame, while also using the guilt she feels to make necessary adjustments to her life.

Links:

Ep. 22: It’s All My Fault

Check out our affiliate BetterHelp’s therapy services.

78: Wendy’s Story Feb 10, 2022

Show notes

When Ammon was born, Wendy immediately knew something was different about him. He was baby no. 6, and her internal alarms were sounding. As he grew, more and more medical issues arose.

In this episode, she shares the trauma she experienced when no one took her concerns seriously. She also tells us of the incredible story of finding his rare genetic syndrome diagnosis when he was five years old, and how that affected her grief.

Ammon is now 15 years-old and brings her and her family so much joy.

Links:

Check out the website for photos of Wendy + fam.

Ep. 64: Improvement-Triggered Grief

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77: To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way.” Feb 03, 2022

Show notes

I am definitely one of them. Hearing other parents of children with disabilities say adages like this one has always made me squirm inside because it’s simply untrue to me. I would have Kimball another way—free from pain and suffering. But I’ve realized a trend—the parents saying this phrase were almost always parents to children with disabilities that do not cause pain or suffering in and of themselves. And are certainly not life-shortening.

In this solo episode, I divide out disabilities and medical issues into those two categories—ones that cause suffering and the ones that do not. And I suggest that we accept that we will probably always hate those in the first category (because what parent loves something that causes their child pain) and move towards acceptance and love for those disabilities in the latter group.

I also acknowledge than the sadness or pain we have over anyof these disabilities or medical issues always stems from the love we have for our children.

Links:

Support your mental health and this podcast by checking out our sponsor BetterHelp for licensed online counseling.

Solo episode about Wendy and our huge struggle together.

Ep. 13: Feeding Tube Adventures.

76: Medical Mom Soul-Searching w/ Moira Cleary, CPC Jan 27, 2022

Show notes

As caregivers, our needs often get pushed to the side. Self-care can seem impossible. Which is why I love the simple act of recognizing our top four values. According to Moira Cleary, when we identify our top four values, we identify what we need most in our lives. These can vary wildly from person to person.

Moira gives us the tools we need to do a little soul-searching and figure out just what these values are for us. Simply being aware of these things can inspire us to make subtle and simple adaptations to our ever day (busy) lives that truly make a difference.

In this episode, we also discuss the need let go of the expectations we had for parenthood and embrace our very different reality. Moira also speaks to the importance of recognizing our limited capacities—We cannot and should not try to do it all.

Links:

Ep. 32: Self-Care w/ Jessica Patay.

Download Moira’s Value Exercise.

Moira’s website.

Follow Moira on Instagram.

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75: My Journey as an Adoptive and Foster Medical-Mama w/ Sarah Yates Jan 20, 2022

Show notes

Over the two years Sarah and her husband Steve have been foster and adoptive parents, they have had to face intense feelings towards those who have harmed their children, and work through intense grief.

In this episode, Sarah talks about her grieving process in regards to Zariah, ways she’s changed as a person because of her, and how she’s dealt with the difficult feelings towards her children’s birth parents. She also shares the intensely difficult feelings towards the nurse that caused her daughter’s death, and her desire to someday forgive her.

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