By: Jaime Rafferty
The petite, soft-spoken, Cinderella-look-alike with big, fluttering hazel green eyes, porcelain skin, and luscious blonde curls cascading to her mid-back is more than your average Disney World enthusiast—much more. She is a cancer survivor.When people meet Kaylie, they see the old adage “good things come in small packages” is true.
You are greeted by an infectious smile and sparkling eyes from a very shy little girl. It’s hard not to scoop her up when you hear such an inviting giggle.
From first glance, you wouldn’t dream that this little girl, who is a kindergarten student at Audubon Elementary, had a care in the world. She has two supportive parents along with two precious sisters. What could 5 year-old Kaylie have to worry about?
It was just under a year ago when mom, Laura, noticed that potty-trained Kaylie began having accidents. Up to the point the accidents began this was not a regular occurrence.
This prompted an exhaustive search for the culprit causing Kaylie’s issues.
What began with visits to the pediatrician lead to seeking more answers from specialists in Louisville.
Kaylie’s medical history started as she was born six weeks prematurely. Her lung development was only about 20% and thus a fight for survival began. Laura says that each year has brought different challenges with her daughter’s health but that she is a “fighter.”
What’s her latest battle? Doctor’s have concluded that Kaylie not only has a dysfunctional voiding bladder (a bladder that cannot empty out), but recently tests revealed a 99% chance that she also has a tethered spine (causes bladder incontinence as well as motor and sensory impairments). Though separately big challenges, together they are a lot for this family to comprehend.
In less than a year, Kaylie has been seen by three specialists, looking for answers. She has had 20 urine cultures, all of which came back infected. This little ball of courage has undergone eleven different tests as well as three surgical procedures, two didn’t take and the family is now waiting to see if the last one was successful.
When asked how often Kaylie hurts she quietly replied, “Every day.” As Laura watched her daughter she tearfully said, “She makes me emotional with a smile.” The relationship between mother and daughter is proof of that.
Kaylie seems to touch everyone she meets. In fact, Laura said that her husband’s co-worker and his wife could see the toll the repeated trips to doctors was having on the family both financially and emotionally and graciously gave the family a financial gift to use as they saw fit during a hospital visit to Louisville. But that’s not all. They also gave Kaylie a darling baby doll. Kaylie has affectionately named it “Ladybug.” Just like Kaylie, Ladybug is one tough doll as she has received IV’s and surgery too. She’s been at Kaylie’s side since given to her.
Often during times of pain Kaylie will excuse herself from the family and go to her room and lay on her bed with Ladybug to cope. When Laura goes to her daughter, she will comfort her and encourage her to share those feelings. Kaylie kindly responds, “You worry enough, Mommy.” Laura says, “But isn’t that a mother’s job?”
It was an experience in public that changed Laura’s perspective forever about her daughter’s battle.
As Kaylie began to have issues with her bladder, it bothered her that she was a big girl but had to revert back to toddler measures of wearing a diaper. That day, before leaving the house, Kaylie begged her mom to let her wear panties instead of the pull-ups they were now having use due to the unpredictable nature of her bladder. Laura reluctantly let little Kaylie wear her “big girl panties” so that she could feel “normal” again. Kaylie beamed and promised she wouldn’t have an accident.
While dining at a local fast food restaurant Kaylie asked to go to the restroom. Mom let her go, as she could see the restroom from her seat. After several moments Kaylie had not emerged and Laura went to check on her. Though the door was locked, Laura knocked announcing it was her and asking if she was okay. Kaylie refused to the unlock the door at first. Laura pleaded that she couldn’t help her if she didn’t let her in. After a few moments, the saddened Kaylie opened the door. She stood there protesting, “I’m sorry Mommy, I’m sorry.” Laura looked down saw that she indeed had an accident. Laura stood there trying to offer a solution knowing she only had a pull-up with her and this would not help her daughter’s dampened clothing.
After a few moments Laura decided what she was going to do. She selflessly had an accident on herself to ease her daughter’s pain. Kaylie looked up at her and Laura said, “See honey, even big girls have accidents sometimes too.” They left hand in hand with their family. Laura wanted her daughter to feel no shame, accidents happen!
When Laura shared this with others, initially she was met with remarks of, “you did what?” or looks of disbelief, but she firmly believes, “A mother has to do, what a mother has to do.” If her daughter endures physical pain every day, along with the emotional pain of accidents, Laura believed her “accident” paled in comparison to the bravery her daughter shows.
All of Kaylie’s story has yet to be written. Later this month, she will see her surgeon again to continue to explore her medical options. However, right now she lives with courage and a loving family that has learned not to take their children for granted and that accidents are not the end of the world!
Laura says that when you see Kaylie you see a little girl who is carrying courage and strength.
Though she may be a little girl, Kaylie lives out big courage!