The Rare Life

Latest Episodes:

133: Bek’s Story | Solo Medical Parenting, 13 Years of Living in Survival Mode + Grieving the Children She Dreamed of Having Sep 07, 2023

Show notes

Like many of us, the diagnosis of a genetic disease for her son came as a surprise to Bek. One moment she had a “typical” pregnancy and the next minute, she had a medically complex baby. That was 13 years ago, and since then, Bek’s been navigating how to parent a medically complex child on her own as a single mother.

In this episode, she shares with us just how lonely and alienating parts of her journey have felt, both as a single mother and as the mother of a medically complex child whose needs are very different than many of his peers. Bek also shares how her life and the way she must care for her son have changed as he’s gotten older. Bek’s speaks so vulnerably, and I can guarantee that there’s something here for everyone, even if your life circumstances differ. I can’t wait for you to hear her story.

And a big thanks to this week’s sponsor, GeneDx. Check them out if you're in the process of finding a genetic diagnosis for someone in your life.

Links:

Check out GeneDx and see all their options for genetic testing!

Listen to Ep 130 on Anticipatory Grief

Follow Bek on Instagram @bek_bradley!

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!

132: When “Self-Care” Gives Us the Swears | the Inaccessibility of Self-Care + How to Redefine It w/ Amanda Griffith-Atkins, LMFT Aug 31, 2023

Show notes

Is it just me, or as the parent of a medically complex child, does hearing the word “self-care” in a general context make you roll your eyes? Most of us are just trying to keep our kids and ourselves alive and mostly healthy. We don’t have time for bubble baths or hours at the gym or spa treatments. So what does self-care look like (in the most feasible and east cringy way possible)?

In today’s episode, Amanda Griffith-Atkins is back one more time to discuss this topic. We share all the thoughts and feels from this community on “self-care” and especially how it feels so inaccessible to us as parents of children with rare diseases. Amanda and I also discuss how we can redefine self-care in a way that’s actually helpful to families in our position.

If you’ve been feeling tired, burned out, and honestly, so done with the traditional *SeLf-CaRe* advice, you’re not going to want to miss this episode.

Links:

Listen to all of my previous episodes with Amanda: Ep 131: Chronic Stress, Ep 130: Fear of Child Loss, Ep 99: Family Planning, & Ep 81: Health Anxiety.

Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins.

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!

131: Chronic Stress + Our Bodies | Ways Our Physical Health Takes the Hit w/ Amanda Griffith-Atkins, LMFT Aug 24, 2023

Show notes

Parenting children with medical complexities and rare diseases is incredibly stressful. This isn’t news to any of us who’ve been living this life for a little while. More surprising are all the ways – and there are SO MANY – that stress can show up and cause issues in our physical bodies.

From insomnia and exhaustion to weight and body changes to health problems and chronic illnesses, we’re sharing all the ways chronic stress has manifested physically in our bodies in today’s episode. Amanda Griffith-Atkins joins me once again as we discuss the impact on chronic stress and some of the ways that we can try to minimize its effects.

We don’t have the solution to every issue chronic stress causes, but we see you and we’re right here with you trying to figure it out for ourselves too.

Links:

Listen to all of my previous episodes with Amanda: Ep 130: Fear of Child Loss, Ep 99: Family Planning, & Ep 81: Health Anxiety.

Listen to Ep 85: Parental Identity When You Have a Disabled Child with Emily Ladau.

Read Burnout: The Secret to Unlocking the Stress Cycle by Emily and Amelia Nagoski.

Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins.

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!

130: Fearful of Child Loss | Anticipatory Grief + the Ways it Guts Us w/ Amanda Griffith-Atkins, LMFT Aug 17, 2023

Show notes

Every parent fears losing their child. But for most parents, that fear is vague and instinctual more than it is a likely reality.

When it comes to parenting medically complex children though, this fear isn’t far-fetched, and it’s not something that lives only in our nightmares. The possibility (or in some cases, the certainty) that we could lose our child colors everything from the way we interact with those around us to the choices we make when it comes to structuring our lives.

In today’s episode, Amanda Griffith-Atkins joins me once again to explore the fears around child loss and the anticipatory grief that so many of us carry. We share contributions from members of our community covering everything from fears of all the different ways we could lose our children to dealing with the ever-present grief of knowing that our children might not outlive us.

This episode is here to offer you some solidarity and assurance that you’re not alone when it comes to coping with this heavy topic.

Links:

A big thanks to our community members who contributed to this episode including @findingoutrainbows, @momofhanah, momlife0203, @freyasluckyarm, @niki8663, @vilmers, and many others!

Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins.

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!

129: Maddison’s Story | A Delayed Diagnosis + Painful Comparisons Aug 10, 2023

Show notes

Have you ever felt like you just don’t quite fit in this community of medically complex parents, because your life isn’t “hard enough” or your child’s disability or diagnosis isn’t “severe enough?” Maddison has been living within this feeling of imposter syndrome for years now, as she’s navigated the long and winding road to finally receiving her daughter Eleanor’s rare diagnosis.

In today’s episode, Maddison shares with me how, despite her family’s struggles, she’s still had trouble feeling like she belonged in the medically complex community, and how she eventually came to terms with that reality. We also dive into the trickiness around overcompensating with our children who have disabilities and what it feels like when the people around us seem to be over our children’s recurrent medical issues.

If you’ve ever felt like you’re still finding your place in our community, this is one episode you can’t miss!

And a big thank you to our sponsor GeneDx for making this episode possible. Check out their website for more information on genetic testing if you’re still searching for a diagnosis in your family.

Links:

Check out our generous sponsor for this episode GeneDx!

Follow Maddison on Instagram @maddisonjhall!

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!

128: Season 8 Kickoff | a New Theme, Sneak Peeks of Brand-new Episodes + a 9-Month Secret Revealed w/ Brittany Steitz Aug 03, 2023

Show notes

We’re kicking off another season (number 8!!), and we’re coming in hot with a super exciting update about The Rare Life. Brittany Steitz joins me as we share about a major update that we’ve been working on for NINE MONTHS now, and it’s truly an honor to share it with all of you.

As with each kickoff episode, I’m also sharing a little glimpse into the topics we’re diving into this season (we’ve got some heavy ones, but we’re balancing it out with content that’ll make these tough topics easier to digest), the season’s theme, and snippets of the first four episodes.

Plus, a reminder that the discussion groups are here to stay! You all seem to love them so much, and we’re so excited to be able to offer a space for you to meet and form relationships with over parents of disabled and medically complex kiddos. Meetings will be held every other Tuesday, with two times to choose from, with one group meeting at 8pm CST and one at 8pm PST.

I’m so excited about this new season. Can’t wait to dive in with you!

Links:

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

Follow me on Instagram!

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!

Health Anxiety w/ Amanda Griffith-Atkins, LMFT (Rebroadcast) Jul 27, 2023

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.

*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding two different meetings run by our amazing group facilitators every Tuesday at 8pm in PST &CST. Fill out our contact form to get the Skype link each week!*

Links:

Check out our sponsor Aeroflow Urology for incontinence supplies.

Follow Amanda’s Instagram account.

Check out Amanda’s therapist directory.

Follow Madeline on Instagram.

Join the Facebook group Parents of Children with Rare Conditions.

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

Follow the Facebook page.

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!

To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way.” (Rebroadcast) Jul 20, 2023

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 that the sadness or pain we have over any of 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.

Follow Madeline on Instagram.

Join the Facebook group Parents of Children with Rare Conditions.

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

Follow the Facebook page.

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!

The Sibling Perspective w/ Katherine Acton (Rebroadcast) Jul 13, 2023

Show notes

Katherine never knew a world without her big brother Jonathon. Their relationship has a lot in common with any other run-of-the-mill siblings—they have inside jokes, a whole lot of love, and a bit of resentment. So, why are we talking about Katherine’s experience growing up? Because Jonathon has rare syndrome that hugely affected their home life and every day.

In this episode, Katherine shares what it was like for her and gives us the DL on what we can do and be aware of to be the best possible parents to all of our children.

*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!*

Links:

Ep. 40: Wendy + the Sibling Experience

Ep. 47: Siblings w/ Katie Taylor

Follow Madeline on Instagram.

Join the Facebook group Parents of Children with Rare Conditions.

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

Follow the Facebook page.

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!

Should A Child’s Disability be Part of Their Parent’s Identity? w/ Author Emily Ladau and Amanda Griffith-Atkins, LMFT (Rebroadcast) Jul 06, 2023

Show notes

Like most other parents, my sense of identity forever changed with the arrival of my disabled child. And in many ways, it’s helped me to embrace (at least on good days!) a lifestyle I used to resent.

But I’ve noticed a pushback from the disability community in claiming our child’s disabilities as part of our own identities. So, of course, we had to examine this controversial and intimate topic with the best of the best.

In this conversation with famed disability activist, speaker, and author of Demystifying Disability, Emily Ladau and Amanda Griffith-Atkins guest from Ep. 81 and mom to a disabled teen, we tackle questions like: Is it ok for us as parents to find identity in our children’s disabilities? If so, where is the line? IS there a line? How can I respect both my child’s lived experience and my own? Can I share those experiences on social media? How can parents and disabled people soften towards each other and put down the proverbial weapons?

*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!*

Links:

Purchase Demystifying Disability by Emily Ladau via Penguin House or Amazon.

Listen to The Accessible Stall podcast

Follow Emily on Instagram.

Follow Amanda on Instagram.

Follow Madeline on Instagram.

Listen to Ep. 81: Health Anxiety w/ Amanda Griffith-Atkins, LMFT

Listen to Ep. 54: Disabled Adult Perspective w/ Erica Stearns

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

Join the Facebook group Parents of Children with Rare Conditions.

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.