Kayla Holdaway and Children's Hospital
Kayla
We were introduced to Children’s for the very first time at the birth of our second daughter, Kayla Christine Holdaway, in April of 1992. With no forewarning, Kayla had severe physical disabilities that presented themselves immediately after her birth. She was rushed from the Special Care Nursery in Everett to Children’s Hospital in Seattle. From that point on, our lives have been changed forever.
Arthrogryposis (arthrogryposis multiplex congenita) is a term describing the presence of multiple joint contractures (limitation in the range of motion of a joint) at birth. The diagnosis was fully explained to us, but we were still left with that great question, “Why?” And, “How could this happen?” How could we have not known about this, even with four ultrasounds? Even though the doctors could not explain what causes this disease, they immediately began to demonstrate how to care for a child with special needs.
During that first year, it was obvious that Kayla would need full-time care. We spent nearly every day at Children’s, going from one clinic to the next. Our days were filled with intense physical therapy, hand splinting, leg castings, and more education. We made wedges and shells, strange-looking objects that would make her life so much easier. These creative assistive devices enabled Kayla to sit up and allowed her joints more flexibility. We were never given a glimpse of doubt but instead the assurance of hope and unconditional love. Gratitude for each and every day was what mattered.
A key life-changing phrase was demonstrated to us over and over again: The root word of “disability” is “ability.” This has formed us into who we are as a family today.
Children’s Hospital became a part of Kayla Holdaway. Kayla was a very vibrant, brilliant young girl, and intelligent beyond her years. She spoke with excitement and animation about any subject, and shared her opinions — just as long as she had someone to talk with.
As she would spend hours trying to recover from being sick, she would lie quietly on the bed playing with her Polly Pocket toys. Since Kayla did not have use of her arms or legs, she would play while lying down. She would manipulate the Polly Pocket toys by the use of a straw in her mouth — and when she needed the attention of her doctor, she would get it. Even if it meant she would have to send one of the Polly Pockets to sit on his desk as a reminder.
Children’s Hospital became a part of our parenting. When our family was introduced to Kayla’s primary pulmonary physician, one of the first things that he taught us was that “at Children’s Hospital, we don’t just treat the patient, we treat the whole family.” He went on to further explain that it didn’t do Kayla any good if her parents were working really hard on following doctors orders, but things just got more chaotic.
One of the most memorable experiences that Children’s provided us outside their hospital was Stanley Stamm Summer Camp. For several summers, Kayla attended camp, and it was a fabulous experience. It was the first time we had ever left her alone (we had her home health nurse stay with her). It was nerve-wracking for us, but we did it, and she loved it.
It was two years ago (Sept 2003) that Kayla Christine Holdaway passed away, and it wasn’t “staff” that her last words were spoken to, it was her friend Brad, her respiratory therapist, who was bagging her oxygen.
Kayla spoke very candidly about death, with an overwhelming joy and peace about it, unlike any other person I have known.
She left a very large footprint on our heart, despite the very tiny size of her foot — we were changed forever.