People often think of the elderly when discussing caregiving and end of life. But there are parents who give birth to a child, discovering their precious child will need lifelong care and have challenges they were not expecting.
There are countless families and individuals living with these extra challenges. This sets us off on a journey parents never imagined and often feels isolating and frightening.
Her Spirit Dances
On this episode of Healing Ties, we visit with keynote speaker, educator and most importantly, awesome mother, Lois Swope.
Lois is the mother of Karly Wahlin, who lived with Rett Syndrome. From her birth until her death in 2012, Lois and Karly were on a difficult and incredible journey together as they worked to find compassionate, competent care.
During those 27 years, Lois interacted with dozens of practitioners, managing Karly’s health and needs, and eventually, hospice and end-of-life care. Lois is working to inspire deeper compassion and understanding in caregivers by sharing her experiences as a parent of a child who lived with a chronic illness and disability.
But there is more to the story!
Early on in the podcast you’ll hear Lois talk about Karly’s birth and early years. You’ll learn about how Lois witnessed the unexpected when Karly was unable to speak on her own, and was able to share her voice as a writer and music composer.
You’ll hear about a wonderful horse who plays a big role in the story and finally, with the support of her family, devoted caregivers, and medical professionals, you’ll learn that Karly lived a full and purpose-filled life that continues to inspire people today.
Oh, and you’ll want to hear music from Karly’s CD, In My Own Voice, at the end of the podcast!
Enjoy the following show notes, then listen to the entire podcast with our podcast player below.
Just a Few Months Old
Lois: There were no concerns at her birth. But by the time she was a few months old it was evident that something wasn’t quite right. She spent an awful lot of time just crying every day. And I tried so hard to to meet her needs. And it felt like I was never able to figure out what was going on and doctors weren’t able to help us either. I would dare say millions of families who are impacted worldwide by a child who is born and you know, through no fault of any one ended up with a complex medical condition or disability that is going to require lifelong care and we end up in a spot that we never anticipated.
Help Along the Way
Lois: I asked for an evaluation outside of our school district because they had already determined that Karly was profoundly mentally impaired. They introduced Carly to everything from cue cards to picture cards to word cards and then brought out a little tiny typewriter and her little ticker tape that came out the side when she typed in. Karly was able to type out words the very first day. And so our life changed.
Lois: Here was a young girl who was locked up inside her body and had a lot to say and a lot that needed to come out. And boy did she start from the very beginning. She now had a voice in her life and tell us what her favorite color was, and what her nickname was, what she wanted to be called, what she liked, what was hurting on her body. This changed everything!
Lois: I noticed when she was a young girl that all of her hyperventilation and breath-holding would go away when she was on the back of a horse. And so she was involved with therapy or spec riding for years. In many ways it was simple things, but it changed the quality of her life and it certainly added more joy to my life. We tried to imagine other things in other ways we could be involved with, but horseback riding and all those kinds of activities ended up meaning so much to her.
“I am working to inspire deeper compassion and understanding by sharing my experiences as a family member of someone living with a chronic illness” Lois Swope
Listen here for the rest of Lois’ and Karly’s story and learn how they are creating Healing Ties all around us.