Special Needs
The Kelly Family: Finding Balance and Hunter's HopeWhen Hunter Kelly wanted his mom to stay with him and not leave his side, he would grasp her finger tightly. "It was his way of saying, please don't go," says Jill, Hunter's mother, and wife of NFL Hall of Fame inductee and retired Buffalo Bills quarterback Jim Kelly. Hunter suffered a rare form of leukodystrophy known as Krabbe disease. Though he was not expected to live beyond his 2nd birthday, Hunter celebrated his 8th birthday, but lost his battle with the disease in August of 2005.
Thousands of families across the Rochester region, and across the country live with special needs children. Children living with autism, Cerebral Palsy, Cystic Fibrosis, Down syndrome and more. Thousands of parents also live with both special needs children and their regular functioning children as well. Maintaining a balance between your children and with your spouse can be difficult if not impossible given the demands of a special needs child. The Kelly family -- including Jim, Jill, Hunter, daughters Erin and Camryn, and Jill's mother Jacque Waggoner were immersed in searching for that balance, a journey that would take them from tears to triumph as the legacy of Hunter continues today in a foundation dedicated to raising awareness and providing potentially life-saving services for other families across the country. Diagnosis Doctors gave a variety of diagnoses, from colic to cerebral palsy before finally diagnosing Hunter with Krabbe's disease three months after his birth. "He has a fatal disease that will take his life before his 14th month," Jill recalls the doctor saying to them. "There is no treatment. There is no cure. You need a feeding tube for him, and keep him comfortable." "When the doctor told us to take Hunter home and that no one could help him, we said, 'you mean there is nothing we can do?'" says Kelly. Jim Kelly couldn't believe what he had been told either. "I was in a state of shock. I was mad at God. All the dreams I had planned for my son were torn from me in an instant." Desperate to find answers, the Kellys launched the Hunter's Hope Foundation soon after their son's diagnosis. Daily Demands & Help Though the Kellys could have immediately hired around the clock help for Hunter -- a luxury that most cannot afford, they did not. Instead, Jill's mother left her high paying corporate job, and she and Jill would take turns sleeping with Hunter, who required turning every two hours. That along with medical maintenance took its toll, and finally, Jill got some much-needed professional help. But it wasn't easy for her. "It took so much for me to let go and let others help Hunter," says Kelly. "Occupational therapists, physical therapists and nurses. I had to adjust to allowing others into our lives." But she says they influenced the entire family, and about a year and a half after Hunter's birth, their attitudes focused on Hunter living rather than preparing for him to die. "We decorated his bedroom, in a Noah's Ark theme, says Jill. "And we took him sledding, with oxygen in tow!" Finding Balance "Do you love me as much as you love Hunter?" Even the most sensitive child living with a sibling with special needs will have some feelings about their brother or sister receiving more attention than they do. And Jill says that was a difficult question to hear from her daughter. But Kelly explained that even before Hunter, her second child, was born, she wondered if she'd have enough love to give as much as she had for Erin. And Kelly says her answer to Erin was "absolutely." Despite the constant care Hunter needed, Jill made it a point to carve special time for her daughters. "I would have 'Mommy/Erin and 'Mommy/Cam days just for the girls and me," says Kelly. "We would get away and do whatever they wanted to do to help balance things out." The girls also got physically involved with Hunter and helped him with his home-school assignments by holding his hand and helping him write. They also had a band, and Hunter rang a bell with his hand when he could. The girls bonded further with Hunter by playing board games and watching movies. "They just had this compassion for Hunter and all people, that they could not have learned in any other way had they not lived with Hunter. They were just very sensitive that Hunter needed Mommy or Grammy. They wanted to be involved with what Hunter was doing. They knew that when Hunter was sick, or needed Mommy or Grammy that it was important," says Waggoner. Experts agree that quality time spent away from the children is vital to the health of the marriage. This is especially true when you have a special needs child. "It is important for couples to have time for themselves as the marriage can take a back seat to other demands with the feeling that there will be time in the future," says Dr. David Tiller, Chief of Psychiatry at Clifton Springs Hospital in Clifton Springs, NY. Sometimes that time never comes and when it does there can be such a chasm that the couple cannot or finds it exceedingly difficult to bridge the gap that has grown between them. This becomes even more important when there is a special needs child," says Tiller. "This includes time devoted only for your spouse." In the Kelly's marital relationship, Jim was working and traveling off the field a great deal, which was trying for Jill at times. But they made the effort to make time for just each other. "Jim would take me out on the motorcycle for a ride," says Jill. That and late night movies were a haven for the couple. Jim says that wasn't often enough, but acknowledges the reasons why. "Jill and I had very little time alone. We tried to go to the movies when we could. We both understood that Hunter was our number one priority, and that it was okay if we couldn't spend much time alone together. It really was okay. We love each other, no matter what. And we thank God for Hunter and for the love God has given us as a family." And it is God and their relationship with him that has pushed them and carried them through tears and joy. Faith & Hunter's Hope In 2004, due largely to efforts by the Hunter's Hope foundation, New York expanded its newborn screening panel from 11 to 44 conditions, and is currently the only state in the country that specifically tests for Krabbe's disease. The SHINE Act, which was also introduced last October, would establish grant programs so states can increase it's capacity to screen for more than 65 treatable diseases. As the Kelly's continue to advocate and assist families through the organization, Jill holds Hunter's days with her close to her heart. "There are so many things that children with severe disabilities do that no one could ever know. Hunter understood so much more than he could show." She has a math test Hunter took with a perfect score on it on her refrigerator. "He didn't even talk, but he had so much in there. Most people wouldn't notice it, but Hunter's mouth would curl up at the side when he was happy. He was smiling," says Kelly. And with their continued efforts, more families and children will smile while benefiting from the goodness that is Hunter's Hope. Jim and Jill Kelly live in Orchard Park with daughters, Erin, Camryn, their two Labradors, and latest addition to their family-a Chihuahua, Bella. This article originally appeared in the September 2007 issue of Genesee Valley Parent Magaine. Copyright 2011.
|
Enjoyed this article? Share it with a friend!
