ONCE UPON A GENE - EPISODE 040 - Physical and Emotional Well-Being for the Caregiver with Tyra Skibington
Tyra Skibington lives in Kelowna, British Columbia with her family and she's the Founder of Mind Over Mat, a yoga and fitness studio. She's a superwoman in the world of emotional and physical well being and the mother to a beautiful girl named Darby. At 5 months old, Darby was diagnosed with a rare disease called Pallister Killian syndrome (PKS), a rare mental disorder that affects about 500 people in the world.
EPISODE HIGHLIGHTS
Can you tell us about Darby and how her disease affects her?
My daughter is 13 years old and was born with Pallister Killian syndrome. What that means for us is that she is a newborn in a 13 year old's body. The symptoms that primarily show up and the things we struggle with the most are extreme muscle tone issues, she's deaf, she's blind and she has seizures. She also has unique facial characteristics associated with the syndrome.
When was Darby diagnosed with PKS?
I had a child before that was neurotypical, my pregnancy was normal except migraines in the final trimester. When I delivered Darby, there was a NICU unit in the room just in case because her heart rate was dropping and when my water broke, it was a lot of water. Darby came out not looking great and they immediately took her to NICU where we spent 13 days being tested for everything. She had a bilateral cleft palate which was the obvious birth defect and they went from there. We got a scan of her brain and it was determined that parts weren't connected and she was missing parts. We didn't officially get diagnosed with PKS until Darby was closer to 5 months old.
How did you move forward into the world of self care, a fitness company and planning retreats?
It's been a revolution. I am generally resilient, but Darby took my resiliency to a whole new level. We saw her fighting and pushing to keep going and that was our motivation to bring it. We're Team Skibi and we live by that and it's our family mantra. I felt like I lost control and Darby shined a light on the fact that I had control issues and that I needed to let some stuff go. She was the ultimate therapist for me. I couldn't control her diagnosis or prognosis, so I wanted to be the best advocate and mom for her, which means taking care of myself and focusing the control I needed to have on myself. Fitness has always been part of my self care, but I needed to find a community that felt like I felt. Mind over Mat came about from surrounding myself with people that were good and wanted to take care of themselves. The right people found me at the right time and it grew from there.
Tell me about Mind Over Mat.
I have a kinesiology degree and the human body has always been my passion. When I had kids, I diverted off the plan I was on, knowing I would come back to it. I had to stay home with Darby and drove myself crazy, so I had to get creative and find resources. We converted a space in our home into a fitness studio, I put myself out there and started developing classes. The next offering was a retreat for special parents that was planned for April and couldn't happen because of COVID, but it's put a focus on this community and how I can expand the offering. I believe as a special mom that you need to have people ahead of you and behind you on this journey. That's where Mind Over Mat is moving towards and I'm letting it happen organically through an online offering for now.
LINKS AND RESOURCES MENTIONED
EPISODE 029 - Put Your Own Oxygen Mask on First
TUNE INTO THE ONCE UPON A GENE PODCAST
CONNECT WITH EFFIE PARKS