When families discover great playgrounds, they are thrilled! It becomes a their favorite that they return to over and over again. Frequently, word spreads about how great, and even inclusive the fabulous playground is but what may not spread as often is the story behind the playground.
We wanted to take some time to share Kayla’s story, the sweet little girl who is the inspiration behind Kayla’s Playground. Her mother, Shelly, graciously shared her story and we hope this will further inspire others through Kayla’s life and legacy.
Kayla had complications at birth, 08/01/04, and was diagnosed with hypotonia. At 4 months of age, Kayla was then diagnosed with failure to thrive and many tests were done to determine if she had some type of genetic disorder. At 6 months, doctors diagnosed her with cerebral palsy.
At age 1 she started having seizures and was put on several medications to control them. The seizures were never 100% controlled.
Kayla had her good days and bad days, her hospital stays and her clinic visits. Often times it was hard to keep up with all of her needs let alone try to explain what she was going through day to day.
One could go on and on about the struggles that Kayla and our family had, but we want to focus on the quality of her life and how she could communicate without ever speaking a word. She was enrolled in a study at the Waisman Center in Madison, Wisconsin which focused on communication of children diagnosed with Cerebral Palsy.
Kayla had learned to make decisions with a “yes” or “no” response by just looking with her eyes either to her left for yes or to her right for no. She also had learned to control her environment with simple cause/effect switches placed carefully near her temple which she would push with her head to turn on music (she LOVED music) or some other toy.
From a very early age, Kayla was placed with three wonderful therapists who would work with her until she turned three and transitioned to the public school to receive the same services. Not only did Kayla attend school, she also participated in Girl Scouts and was a Daisy for two years.
In April 2011, Kayla had hip surgery and the entire school rallied around to support her by wearing butterfly hair clips and Kayla’s Krew tattoos. The tattoos were purchased for our annual participation in Joe’s Run, Walk and Roll for UCP in southeastern Wisconsin. We had started participating when Kayla was 1 year old and have many pictures of Kayla’s Krew as it grew in size each year. Our 7th year was our biggest year; we had a goal of having 70 people sign up, instead we had 78 people join our team!
On the day of her passing, Kayla had her doctor, nurses, teachers, her principal, her therapists, friends and family all come to see her. Our home was filled with people, but it also felt like it was just Kayla and our family. One of us was always at Kayla’s side holding her hand, rubbing her feet or simply talking to her. Kayla was a social little girl and loved music so to have everyone there to see her and to have the neighbor boy, Sam, there to play his violin for her was simply beautiful!
Kayla was truly an inspiration to all who had the privilege of knowing her and legacy lives on at Kayla’s playground where children and adults of all abilities can come together to play!