It is my hope that this blog will amuse you and encourage you to document your own trip to GKTW and the Disney empire. I have regularly come back to it to reminisce about the trip and the many happy memories we made that week.
The past month, it has become even more important to me. On 30 January 2012, we lost Kayla. True to form, she slept through it. We had always known that Kayla was unlikely to outlive us, but we always thought we would have plenty of warning and there would be time to gather the family around for the final hours. Instead, she was dead within hours of a diagnosis of pneumonia/sepsis. The onset was sudden to us, and the end was a confusion of medical staff, procedures and urgency, but ultimately she didn't have the strength to beat it back this time.
Treasure your trip. Preserve the memories. But above all, enjoy yourself and don't experience the whole thing through a viewfinder. Your memory will provide all the high points for your review for many years to come.
With Kayla’s departure, we have mixed emotions. The worst sense of emptiness; a hole in the family fabric; 13 years worth of carefully cultivated habits that will now need to be broken; frustration that we couldn’t snag one more week, month or year with her. A sense of lost opportunities and ideas left unfinished. For her birthday we were going to get her ears pierced, and I have to wonder if maybe that’s why she checked out – so many piercings already, and then her parents want to toss in two more just for looks!
But there’s that silver lining as well. No longer do we have to worry about what will happen to her when we can’t care for her anymore. She won’t be shunted into an institution to be forgotten and isolated. She won’t be affected by the constant loss of known caretakers and companions as the staff and residents at a home change over time. She won’t suffer in silence as caretakers not familiar with her either over-react or under-respond. We aren’t scared that we might not be able to get her out of a house fire, or might drop her down the stairs. I don’t have to worry that she’ll be alone if I cut my finger off working on some harebrained project and pass out when no one else is home. She no longer has to put up with needles, indignities and long drives in the van with nothing to do.
She had the best life we could give her and she lived it to the fullest. She had a sense of humor and loved to play small jokes on us. She participated in family pillow fights and the Saturday Morning Tickle Tussle. She would play possum, pretending to be asleep when I came home from work. Then, when I kissed her on the forehead, she would look up and give me the broadest smile, almost laughing out loud because she fooled daddy. She also did the occasional impression. She must have been a big Star Wars fan, because she did the best Chewbacca you’ve ever seen!
All those lessons we were taught by her have been more firmly imprinted on us by her death. We will more likely remember to love unconditionally. We will never look at another disabled person with pity, but with appreciation for the family they have. We will never assume a disability to be a burden. From time to time, we would be out as a family and Jason and Emily would be wound up, chasing each other, yelling and playing. A total stranger would hold a door for us and as we herded the crew through they would look at Kayla and say “You must really have your hands full!” We would each try to collar a kid, look at them, then look at the stranger and agree wholeheartedly.
Kayla was the perfect child. Never once did she mouth off to me, and for a pre-teen girl, that alone may be a miracle we should report to the Pope. Never did she complain incessantly, or beg for something she shouldn’t have. Sure, she had a drug habit, but it was cool… No matter how distracted we got, Kayla was always right where we left her. She didn’t go running off during a moment of inattention. She never once ran into traffic in a busy parking lot, or slipped into an unwatched swimming pool. She never had a cruel word for anyone, and if she knew your secrets, she took them to the grave. Thank God.
But if you crossed her, she would let you know in no uncertain terms. During an exam by a pediatrician, the doctor expressed his concern about her low muscle tone. Not impressed by his evaluation, she calmly bided her time and as soon as he was in range, she kicked him in the head.
She was also a cheerleader. A friend of ours, John O’Grady, once rode a bicycle from Dayton to Albuquerque to raise money for epilepsy research. For the full duration of his trip I don’t think Kayla’s legs stopped moving. She sat in her chair and stomped her feet constantly as if she were pedaling right along with him. He made it, and she slept for a week solid.
Kayla was a teacher. Since Children’s Hospital is a teaching hospital, we would work with residents on a regular basis. Not a single in-patient visit went by that didn’t involve student doctors. With her particular set of symptoms, issues, challenges and parents, these residents quickly learned that statistics are BS; probabilities are unlikely; every mother of a sick child is a mama grizzly, and if it’s weird it must be Kayla-normal. One doctor now knows the difference between 1 mg and .1 mg and that you never assume a decimal point was placed in error when writing a prescription. There is a triage nurse that now knows what combination of button pushes will enable a thermometer to register temperatures lower than 90 degrees. More than one chaplain learned that trauma bay doesn’t have to be humorless and scary. A resident learned that a tracheotomy doesn’t fix problems, it just changes the risks. And more than one knows that they work for us, not we for them. I hope that Kayla made a good hospital better and that those student doctors will carry those lessons to their future employers. In some small way, Kayla made medicine better.
But the greatest impact she had was bringing us to all of you. I lost count of the number of times that someone Gina and I didn’t know would come running up to greet Kayla, calling her by name and clearly familiar with her. After a moment or two this insane stranger would acknowledge us and introduce themselves. It was always “I met her at school” or “I worked with her at Max’s House”. Sometimes we would never know where she met these people and would have to wonder where Diane was taking her when we thought she was at school. A balloon glow at Coney Island was like a reunion for Kayla. Every year you could count on seeing certain people hovering over her, talking and holding her hands, but we would be busy holding a line or shutting off a fan. Kayla was holding court, perched in her 4-wheel throne. She moved in her own mysterious circles. There are people here today representing 2 schools, more churches than I know, our neighborhood, the hospital, co-workers past and present, and extended family and friends in such numbers we could never possibly acknowledge everyone. This is like the best flash mob ever!
For a girl who never spoke a single word in 13 years, that may be the greatest miracle of all.