Passing for Normal

Jared and Colleen will be sharing stories from their unusual life as expats that are also sorting through grief after the passing of their daughter Claire, who live with Rett Syndrome for 15 years.

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Episodes

2 days ago

In this episode we discuss learning a whole new school system, which moves graduation up by two years and how Colleen can't cry so she's incredibly overwhelmed by dress shopping, which should be a fairly simple and straight forward process. We also talk about learning how to podcast and not delete 8 minutes of a show. So much to learn, thank you for being here.

Monday May 13, 2024

We've had a lot of coffee over the years. Maybe we had too much before we recorded this. Apologies that the microphones aren't more balanced and the conversation wondered, we are learning as we go.

Siblings, specefically Chloe

Monday May 06, 2024

Monday May 06, 2024

In this episode we discuss our typical daughter Chloe, yet in reality she is anything but typical. She is excellent and has shown us parts of life we would have missed without her. This discussion ended up being a bit more about the wild years when we decided to grow the family and chaos that we managed to survive with two young girls. We also touch on a bit of her perspective with her sisters death and life after that. This won't be the last time we talk about her as she is one of our favorites and we plan to have an episode with her in the room soon.

Sunday Apr 28, 2024

A lighthearted discussion about Colleen's disdain for contrived Hallmark holidays like Mother's Day and now the addition of Bereaved Mother's Day.

Travel Then and Now

Sunday Apr 28, 2024

Sunday Apr 28, 2024

In this episode we discuss a recent trip Tasmania along with the difference between traveling around Australia, Europe and the US. We also discuss how travel changes in light of our previous experience, with Claire and some of the things we learned getting to go places with her.

Introduction

Sunday Apr 21, 2024

Sunday Apr 21, 2024

Take two! Colleen here. You may have listened to one of the few episodes on the podcast I had recorded, Rare and Unfiltered. I've decided to take this project in a different direction, one that I hope you enjoy. This is a new introduction that included my fabulous partner in crime, Jared. In this episode we talk about the death of our daughter and how that influenced some significant decisions, that have ultimately led to to put this podcast out. The process of loosing a child is horrible, our hope is that by talking about it, somebody else might feel a little less isolated.

Monday Oct 02, 2023

Chloe joins me as the first guest to the podcast in this episode. We talk about handling awkward questions and grief as a surviving sibling. She is wise beyond her years and it is an honor to share this episode.

Moms not Martyrs

Friday Sep 01, 2023

Friday Sep 01, 2023

This episode addresses my thoughts on how mothers to complex kids are often expected to be Martyrs, how we worked around it and some ideas for realistic self care.
If you are interested in my favorite self care tip of breathing, this article is a great place to start.
 
https://www.seasons.com/breathing-coach-tips-for-caregiver-stress/2675053/

Friday Aug 25, 2023

First episode! The production isn't pretty and I am still finding my voice, but this is a start. In this episode I talk about how I wish I had a more complete understanding of grief, including how beautiful life can be. I would love to hear your feedback, I am on Instagram @rareandunfiltered

Introduction

Friday Aug 25, 2023

Friday Aug 25, 2023

Hello and welcome! This episode is just a quick bit of background on why I have decided to start the podcast.
 
Over the last two and a half years I have noticed that there aren't a lot of people in the grief space talking about loosing a child that was multiply disabled. In my case, I am the mom to Claire, who lived with Rett Syndrome for 15 years. When she was first diagnosed there was little information online about living with this disorder, so I started a blog. I am finding myself in a similar situation now, with little information or stories about life after the loss of a child that was multiply disabled. So I figured I would ramble a bit, share what I know and hopefully make somebody out there feel a little less alone in this. 

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About Us

When our daughter Claire was diagnosed with Rett Syndrome in 2007 we were underwhelmed by the information about life with the disorder online, so I started a blog and shared our stories. This lead to connection with others in similar circumstances that I am grateful to be connected with. It changed the game for us to feel less alone.We built a beautiful life in spite of our challenges and made loads of incredible memories that more than offset the hardships.

In 2021 it all changes when Claire passed on to her next adventure unexpectedly. It was the most disorienting and traumatic event of our life. As we work to continue living and make sense of what life is now, we have noticed that there's not a lot of content around child loss for those who were also caregivers to a multiply disabled, medically fragile child. We want to share our story and hopefully meet others with similar circumstances again and maybe somebody out there will feel a little less isolated because this is being talked about.

 

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