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 withcerebral palsy. We found Penfield Children’s Center,which is a Birth to Three Program where children with special needs can go to receive much needed services such as physical therapy, occupational therapy and speech therapy. 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. 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. Many schedules were made to give an ever increasing list of medications to her throughout the day. My husband and I would be up in the middle of the night with her. She wasn’t your typical child who would “start sleeping through the night” at a certain age.
I could go on and on about the struggles that Kayla and our family had, but I willfocus on the quality of her lifeand how she could communicate without ever speaking a word. We enrolled her in a study at theWaisman Centerin Madison, Wisconsin which focused on communication of children diagnosed with Cerebral Palsy. We learned a lot from the therapists there. 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 a 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. She also used a switch that was placed on her tray that she could also push with her hand to manipulate a toy, but that was a lot more work for her.
Kayla had play dates with other children where we would bake cupcakes and decorate them or do some other activity. We tried very hard to fully include Kayla just like at school so we would attach Kayla’s head switch to her wheelchair and she would push the button with a slight movement of her head to turn on the blender to mix the cupcake batter. A friend in her class, Alexis, had even picked Kayla to join her and her mom to go to The American Girl store to celebrate her birthday. We put pictures of gift store selections on Kayla’s iPad so that she could pick an outfit for her doll and then Alex could look around the store to find it. It was a beautiful day!
Kayla was involved in Girl Scouts. She 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 leaves a memory and a beautiful legacy in the hearts of everyone who has heard her story. To this day, we continue to honor her lifeand have continued to participate inJoe’s Run, Walk and Roll for UCP. The walk just completed its 8th year, the first year without Kayla. Kayla’s grandmother, Darlene, still makes butterfly hair clips to sell. Our family and Kayla’s Krew are striving to build a playground where children and adults with all abilities can come together to play.