Episodes
Friday Jun 14, 2024
Friday Jun 14, 2024
In a special Friday evening episode, we discuss Chloe not needing us, how crazy winter in Australia is and the complicated feelings around social expectations of grieving parents. This will be our last episode until August. We are looking forward to a break and coming back with some fresh stories.
Sunday Jun 02, 2024
Sunday Jun 02, 2024
In this episode we talk about self care, how ridiculous a lot of the messaging around it is and what we have found to be helpful. We also give a little update on what we have learned about the Australian high(er) school situation and talk about how awesome ASCEND, the upcoming conference hosted by the International Rett Syndrome Foundation.
Sunday May 26, 2024
Sunday May 26, 2024
We talk about how music has played a role in many of our more challenging times and how weird it is to be in a fairly normal little groove.
Sunday May 19, 2024
Sunday May 19, 2024
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
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.
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
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.
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.
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
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.
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.