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
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
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
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.
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.