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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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.

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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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.

Links:

Check out our affiliate partner BetterHelp, an online therapy service.

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When Sarah was assigned to care for baby Zariah in the NICU, she fell in love with her. When Zariah’s birth parents neglected to visit or be involved, it was clear that Zariah would need a foster home, and eventual adoption.

Sarah immediately knew she was meant to be her mother. Convincing her husband Steve was another story. Because of HIPAA laws, he wasn’t allowed to meet Zariah until they were officially her foster parents. Miraculously, he agreed.

After several months as a family, Zariah passed away as a result of a tragic trach accident with her home health nurse.

In this episode, Sarah shares their journey with Zariah, and all the love they share.

Links:

Follow Sarah on Instagram @adoptive.foster.medical.mama.

Answer this month’s question.

See pics of Sarah and fam.

Join Parents of Children with Rare Conditions FB group.

It is SO good to be back! After an extra long break between seasons, I’m here with a brand-new season of episodes all centered around our personal journey as parents and caregivers. Obviously, we refer to our personal journeys frequently in virtually every episode, but Season 5 is a chance to really home in on and talk about what occurs for us at a very personal level while facing a very different reality than we had envisioned for ourselves.

In this episode, you’ll get a closer look at this season’s theme, and listen to extended clips of the first four episodes coming your way.

Links:

Follow meon 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.

For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th.

But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’ll recommend an episode that I think you’ll enjoy. Each of them are under-listened gems that you may have missed, but will be glad to catch. I’m so excited to re-share them with you!

This week’s recommended episode is Ep. 22: It’s All My Fault, an exceptionally vulnerable solo episode about finding out I’m a carrier for my son’s genetic syndrome. I share the profound guilt I carry, and the emotions surrounding the fact that I might pass it on to another child someday.

Next week’s episode is Season 5’s Kickoff! I’m stoked to be back with fresh, new episodes.

For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th.

But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’ll recommend an episode that I think you’ll enjoy. Each of them are under-listened gems that you may have missed, but will be glad to catch. I’m so excited to re-share them with you!

This week’s recommended episode is Ep. 54: Disabled-Adult Perspective with the lovely Erica Stearns. In this heartwarming episode, Erica shares the dos and don’ts of medically complex parenting as she has learned as both a medically complex daughter, and mother to two medically complex children.

For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th.

But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’ll recommend an episode that I think you’ll enjoy. Each of them are under-listened gems that you may have missed, but will be glad to catch. I’m so excited to re-share them with you!

This week’s recommended episode is Ep. 33: It’s OK to be Angry, with our local children’s hospital’s palliative care team member Orley Bills. In this episode, we talk about the extremely difficult decisions we must make for our children, and that all emotions are ok.

For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th.

But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’ll recommend an episode that I think you’ll enjoy. Each of them are under-listened gems that you may have missed, but will be glad to catch. I’m so excited to re-share them with you!

This week’s recommended episode is Ep. 39: Inclusive Books are for Everyone. In this episode, I chat with three fabulous authors of inclusive children’s books—Macy Gilson (author of Kindness is Golden), Jessica Parham (author of Good to be Me and Baking up a Storm), and Megan DeJarnett (author of No Such Thing as Normal).