From Caregiver to Community Builder with Roslyn Rawlins
In today's podcast, Jason and Elizabeth have a lively discussion with Roslyn Rawlins, a single mother of two young women, Ryan (23 years old) and Sydney (19 years old), and an entrepreneur with lifelong experience in healthcare. Elizabeth met Roslyn some years ago online as they both have daughters with epilepsy. The conversation today delved into all the experiences Roslyn had as a single mom and caregiver for a child who had significant medical issues but who is doing fantastic now as a young adult. The podcast therefore has a bit of a different spin. We've talked so much here on Who Lives Like This?! with caregivers of very young children or of children who are now young adults living at home with profound and continued caregiving needs. While Roslyn's years as a caregiver were arduous and even harrowing, we appreciate how important and interesting it is to speak to someone who has "been in the crunch" and is now in a sort of transition period with her daughter off living her life independently.
Ryan was officially diagnosed with epilepsy when she was twelve years old after having a tonic-clonic seizure at home and status focal seizures at school, but it took many years and the overcoming of significant obstacles for the team of doctors that Roslyn had assembled to diagnose a brain tumor causing the seizures. Roslyn recounts the hundreds of sleepless hours she spent researching and fighting and advocating for care for her daughter which finally led to a successful eleven hour brain surgery. Roslyn spent a good amount of time telling us the amazing story of what happened to herself immediately following the brain surgery when she experienced what we might describe as "a wake-up call" to self-care. So much of our conversations here on the podcast veer off into self-care and the difficulties we all face taking care of ourselves even as we fight for our children. Roslyn said, "With any kind of chronic condition with your child, but specifically with seizures, [you realize] that you can't be the -- you know -- the master of your soul or the big captain of your destiny. It's quite often just out of your hands. And that's exactly how I felt in that moment. Like, there was nothing I could do about it all just finally saying, hey, Roz, wake up."
Self-care seems a near-impossibility when you are a single mother, as Roslyn shared, and in the aftermath of crisis, she also realized how her other daughter, Sydney, had been impacted. Jason, Elizabeth and Roslyn talked a bit about sibling issues, and then Roslyn shared that despite all the hardship, she and her daughters' experiences eventually inspired them to give back to the epilepsy community. Ryan started a group for teens with epilepsy, and eventually Roslyn became a co-admin for a group called Parents of Children with Absence Seizures that currently has over 7000 members.
Additionally, fueled by her "hatred of seizures" and in an effort to "reclaim her life," two years ago Roslyn helped to co-found Bleuberi. Bleuberi is a tool to help caregivers and individuals with epilepsy manage their epilepsy and health. It's a fantastic tool recently launched on Apple and is available for download. "Instead of it being a manual digital diary, where people would just type in what happened, it's actually true data points that connect and go straight into giving you results and feedback immediately. And then you can compare all of those so you can compare it to your medication, compare it to your mood or appetite, everything, so it's really exciting."
Roslyn is happy to report that both Sydney and Ryan are doing well now, productive and happy in their young adult lives. Ryan’s personal transformation includes teaching and traveling for 6 years. She’s a Dance Instructor, Certified Yoga and Aerial Yoga Instructor and TEFL (Teaching English as a Foreign Language) Certified teacher
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Affirmations written on little pieces of paper and put into a bowl that I would pull out daily and read
The Blessing of a Skinned Knee by Wendy Mogel
The Other Side of the Moon by Carley Eisseman
Most Inspirational Person/Group
My heartfelt thanks to family and friends for their support and the hero Providers that saved Ryan’s life.
Kurtis Auguste, M.D. is a Pediatric Neurosurgeon
Joseph Sullivan, M.D. is a Pediatric Epileptologist
The Point Loma High School Health Office Nurse 2008 -2011
(This wonderful nurse let Ryan sleep in the Nurse’s Office at School so I could put a few hours in at work before coming to pick her up)
Apple App Store: Bleuberi App
You Tube Videos of Ryan's Transformation:
The Faces of Epilepsy a Tribute to Carley Eissman -A video project by Ryan
Ryan Thanking the Make-A-Wish "Outreach Through Dance" Performance Cast
Ryan's High School Commencement Speech