ONCE UPON A GENE - EPISODE 096

Finding Peace and New Energy to Dig Deeper After 18 Years Undiagnosed with Billie Short

Billie Short is the mom of a 20 year old daughter that has an undiagnosed rare disease. She shares what it's like to be a caregiver with chronic stress. 

EPISODE HIGHLIGHTS

Share a bit about yourself and your daughter.

I've been caring for my adult daughter Emily for 20 years. She was a typical baby when she was born and I had an easy birth. At about three months old, I noticed she wasn't meeting milestones and we started testing. We've continued testing and determined she has some sort of genetic anomaly and we don't know what it is. Emily is non-verbal and non-ambulatory and has a lot of the same symptoms of Rett Syndrome. 

How do you embrace not having a diagnosis?

I'm at peace right now. If Emily never got a diagnosis, I would be okay. She is physically healthy and she's outgrown a lot of issues and I'm grateful for that. Recently, I've become more curious to seek answers as testing has changed, but not having a diagnosis offers some comfort in ignorance because I'm present focused and not diagnosis focused. 

How have you managed your stress as a caretaker?

The first 18 years, I was bitter and angry. In the last 2 years, I've learned to find the calm in the chaos and the zen in the zoo. It's been a mind change because this is our life and it's a beautiful life. I embrace the chaos and roll with it. My husband has depression which was brought on in part when Emily was born. When Emily was 18, he was able to get the resources he needed and we were able to break through that. So many parents don't take time to take care of their own health because they're focused on their children and when something forces you to face it, you have to re-evaluate everything. 

How do you feel healthier as a caregiver?

I started out trying to lose weight I gained over the years and I learned a lot about self-care and caregiver burnout. I learned to focus on my physical and mental well-being so that I could continue caring for Emily in the future. I also shifted my thinking of caring for Emily as a gift, not a burden. Changing the way I thought about caring for Emily really changed things. I'm a caregiver of myself first and ensure I'm rested, eating well and getting help from my resources so that I can be a caregiver to my daughter with an open heart, not resentment.

How did you implement better self-care?

I started turning the tv off and going to bed earlier so I could get up earlier and journal. I have an accountability group, I plan meals and plan as much as I can with my superpower- pivot and adapt. I know my plans may get interrupted, but I will figure out how to block time out later for it so it still happens. Part of my self-care has also been listening to podcasts which is getting me connected and helps me feel like I have the bandwidth to support other moms.

RESOURCES MENTIONED

Once Upon a Gene on Clubhouse

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Conversation for Change

https://conversation4change.com/

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