17 August - Raising Kayla, a Child with Cerebral Palsy

I walked into her home and saw little 8-year-old Brooklyn at the kitchen table, scrapbooking quietly. I looked around to see the creatively painted and well-decorated playroom, neat and clean living room and family room. And I looked on the other side of the kitchen table to find beautiful little Kayla in her wheelchair with an artificial aquarium on her tray. Kayla was quietly spitting up, gasping for air. I was a bit apprehensive. Dear friend Shelly hugged me hello with her warm smile. She walked over to Kayla and calmly wiped her mouth as we caught up. Kayla was born with cerebral palsy.

Wikipedia states cerebral palsy, or CP, as "damage to the motor control centers of the developing brain during pregnancy, childbirth or after birth up to age three." There is no cure. Incidence is two per 1,000 live births. And though CP children can have a "normal" lifespan, symptoms become worse as they get older.

I asked if it troubles Shelly to see her daughter struggle this way, trying to take a simple breath. Shelly said, "We have to teach her how to manage by herself, otherwise we would be following her around constantly, doing it for her." I did not realize Kayla could be taught. Period. Such is my ignorance, as I recalled a CP classmate I befriended in college who asked me to go out dancing. Dancing, not dinner. A happy random memory that made me chuckle and gave me hope for Kayla. “So teach versus enable, so she can be independent?" I asked. She thoughtfully replied, "Isn't that what we all want for our kids?"

I think back to when I first visited Shelly months after Kayla was born. She was struggling trying to figure out why Kayla was not keeping her milk down. She took one ounce per hour and was exhausted. "I remember the day she was born. My doctor did an ultrasound and assured me that everything was fine. When they weighed her, she was floppy and was 6 pounds 7 ounces. Brook was 9 pounds 2 ounces when she was born so I was expecting Kayla to be in that same realm. Looking back, she had no muscle tone. After one month, she didn't have the reflexes she should have. The doctor thought it was neurological; we started physical therapy at New Berlin Therapies. You have a baby and do not think anything is wrong...."

From that point, she and her husband John, began to realize what was coming; though I am certain, it was and still is an unknown. One only operates with a finite amount of knowledge -- the wisdom comes through experience. They needed to learn things like holding her jaw so she could swallow easier as a newborn, to placing a NG (nasal) tube in her septum at a specific time -- only when Kayla exhaled -- then feed it into her stomach. They needed to test that the tube indeed was placed in the stomach, not the lungs, by listening with a stethoscope. "Our eyes were really opened to how much we had to do at home. I thought, 'I'm not a nurse; I'm not a doctor. I'm a mom. And this is not what I am supposed to be doing. Home is where she needs to be safe. I will take her to the Emergency Room, but I will not do this here at home.' John had to do it [place the tube].... If I have an ailment, I am not one to pop a pill, so I was fighting this for Kayla. But the seizures are hard to control without medication. Then you have the additional supplements because of the medication’s side effects. When puberty hits and hormones kick in, it will be another change. It's like we are on this ever changing timeline."

So what does it take to care for five-year-old Kayla?
In a day, Kayla will intake 14 different medications, some might be several times per day. These are for seizure, movement and supplements. Because of Kayla's reflux, these meds go into her small intestine, not stomach, through a GJ (gastrojejunal) tube.

• At 6am, Shelly cleans her up from any wetness or leakage due to the 1,000 ml of water given throughout the night. She gives Kayla the first round of medication, nine syringes. Shelly then empties out her vent bag of stomach acid and places on her orthotics (braces for her legs.) After the meds, Kayla falls back asleep.
• When she wakes, Shelly gives her a full bath. Then it is exercise time, depending on the day. Or off to an appointment or two. Every month Kayla comes down with an infection where appointments follow. Any new medication is filled and the medication sheet is changed to control other symptoms that may arise.
  
• Kayla also has therapy twice per week. It is normal to pack for a full day, knowing homebound is at 4pm.
  
• At 1:30 or 2, Kayla is given another round of medication. This is followed by another nap.
• Dinnertime. When Kayla wakes, Shelly cooks a family dinner. Thereafter is dedicated family time.
• Bedtime. The last round of medication is given. Then the bag of water of 1000 ml is put in place.

"We have to be structured but very flexible. Kayla can be fine one day and the next need to be hospitalized due to respiratory complications. Our environment is ever changing and we just have to adapt and figure it out. Brook is our other child in the world of 'normal.' It's keeping that balance. We get out as much as possible. It's so easy to become your own world in your own house. We've met so many people who are trying to find the answers and on the same journey, and yet live that life of 'normal.' We used to see a handicapped child in the grocery store or at a park...I never knew that world existed. Kayla has opened that door."

Penfield Children's Center was an incredible light of hope during their struggle and journey. Shelly and John were the Guests of Honor at the 2005 Penfield Croquet Ball Gala. John spoke and shared their story. “You could have heard a pin drop. Many of the men that sat in that room that night saw themselves in John, [realizing] this can happen to anyone.” They gave back once again by serving as the Event Chairs last year.

"This [situation] has challenged us spiritually, emotionally and physically. There were nights we would be up all night long. John...I don't know how he did it. He's the type of dad who would be up with Brook just because. He is a strong man. We have always stayed close, remained a team and were grateful for what we had." And luckily, they have help that came out of the blue. A nurse named Bethany approached John at church and offered her help. "She is a godsend and watched Kayla for a week while John, Brook and I went to Disney. That was very hard for me. I never wanted to divide our family. But then I realized when we are in the hospital with Kayla, Brook is with a grandparent or friend. I rationalized it as it's no different."

I realize it takes a certain kind of person, couple, to take care of a child with CP, or any developmentally-challenged child. I always thought God gives you what you can handle, so let it be a testament to one's strength of character to be dealt a difficult hand. But to actually be in the experience is not theory. It's reality. I remember seeing John walk in to my former dojang carrying Kayla while Brooklyn attended her first tae kwon do class. I was on my way out and remember how crowded it was. He told me afterwards he held Kayla through the entire hour with all the tubes in place. No one had given up his or her seat.

Shelly is one of those women who I turn to for a dose of wholesomeness. I hope everyone has a few of these people in his or her life. Her attitude is incredible and contagious. From the outside, one might think "simple housewife," as she bakes cookies for the neighbor kids and makes soup for strangers. (Have you or I done that lately?) On the inside, she has an incredible inner strength. Before becoming a mother, Shelly used her Biology and Microbiology degrees to extract DNA for hypertension research for the Medical College of Wisconsin. But her life and lab were in New Zealand.

And at our friend's lakehouse last summer, Shelly, in her 1940s classic fashionista bathing suit jumped on the jetski and took off for a period of time. "It was invigorating to have the wind whip through my hair at nearly 60 miles an hour, feel the water spray against my legs and all the while having the comfort of the warm sun on my back. I felt it like never before. When you are starved of something and first taste it again, the opportunity of experiencing it for the first time resurrects. My senses were at their peak. I just took it all in and relished in the fact that I could." John held Kayla in the shade and Brook bounced on the raft. When Shelly returned, she went on the big bounce and was launched into the air by a high school football player into the water. She is a caregiver first and foremost, but her resourcefulness, playfulness, creativity...person...is still there.

I asked her, in looking back to the first struggle to where they are now, what her thoughts were. "At that time, I doubted my ability that I would be able to provide for her the way that every child deserves. We didn’t have the option of reading ‘What to Expect when you are Expecting’. We researched every symptom and genetic disorder that was published. But Kayla has written her own guidebook and has been a tremendous teacher to our family and anyone who has had the opportunity to spend time with her. Sometimes I still say, ‘God got the wrong address.’ [Laughing] But those are times when I simply forget to turn down her feeding pump to 55ccs from 95ccs and she's feeling like she just ate five McDonald's shakes. Our goal, just like any other parent, is to give our children the best quality of life. I think the tables have turned in the respect that Kayla has given us quality of life. My eyes are now opened to experiencing Kayla’s world with all my senses, much like on the jetski that beautiful Saturday afternoon. We will ride the wave...and whatever comes, will come."