The stories that we hear at the Reminderband offices never cease to amaze us. There are stories of courage, strength and loss. The story we would like to share this week encompasses all of these. Kayla Runte was born October 1st 2004. From birth her complications could have tarnished her bright spirit but with love from her family and friends she was able to live a life centered on happiness and growth. Below is her story, as told by her mother.
“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. 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 (PT, OT and Speech) 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 (myoclonic, tonic and petit mal were among the varieties) and was put on several medications to control them. The seizures were never 100% controlled. We would see an increase in seizures when she was not feeling well, but we just learned that she could still manage to live with them day to day.
Kayla had her good days and bad days, her hospital stays and her clinic visits. As her Mom, I learned quickly who I could talk about her long list of medical needs with. 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.
After 5 years we just could not maintain Kayla’s day to day needs with her night needs and found ourselves very tired and drained. Getting to appointments was getting harder and harder to do on my own. Often times I would have to pull over to the side of the highway to suction Kayla as she was choking on her saliva. Her muscles were just not strong enough to get an effective swallow and I needed a nurse to travel to appointments. In Spring of 2009 Kayla qualified for nursing coverage at night and to assist with doctors visits which was a blessing. We started to get our sleep again which helped us to focus on our other child, Brook, and her ever growing interests. She was born in October of 2000 and 8 at the time.
I could go on and on about the struggles that Kayla and our family had, but the main focus that I want to share is that as Kayla grew older and got into school we tried to focus on the quality of her life and how she could communicate without ever speaking a word. We enrolled her in a study at the Waisman Center in Madison, Wisconsin which focused on communication of children diagnosed with cerebral palsy. We learned a lot from the group there and shared the results and suggestions with the therapists at school. 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 an simple cause/effect switch 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 activity. We tried very hard to fully include Kayla just like at school so we would hook up Kayla’s head switch and she would push the button 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. A trip like that was unheard of since we tried to stay close to home, but with careful planning it proved to be a wonderful time! We even put pictures of 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. We would show Kayla the pictures and she would look to her left for “yes” or to her right for “no”. We would also give her options to push a button which would have a pre-recorded message and she would work very hard to left her arm to push the button. It was a beautiful day!
There are many of those moments of friendship that touched my heart to share! Her friends love her and even though Kayla was in a wheelchair and didn’t speak a word they could communicate with her just by looking at her facial expressions or by her yes/no response. Kayla was in Girl Scouts. She was a daisy for two years. Last year in April 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! This was similar to the amount of people who came to our home the night of Kayla’s passing.
On the day of her passing, Kayla had teachers, her principal, her therapists, friends, 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 Kayla’s family continues to honor her life they have continued to participate in Joe’s Run, Walk and Roll for UCP. The walk just completed it’s 8th year, the first year without Kayla. Kayla’s grandmother, Darlene, still makes butterfly hair clips to sell and now here at Reminderband we make orange butterfly bracelets to honor Kayla’s life. The Runte family is also striving to build a playground where children and adults with all abilites can come together to play. It will be a fully wheelchair accessible playground to include all children and all abilities.