Without a Word: How a Boy’s Unspoken Love Changed Everything Page 6

  I was in for a rude awakening.

  My uncle Mark was the first person to ever share the details of the gospel story with me—the story of our sinful nature, our need for a Savior, and God’s amazing love displayed through the birth, death, and resurrection of Jesus. Mark loved Jesus in a way that I had never witnessed before. He’d been through his share of deep heartbreak and yet was still more passionate for Christ than anyone I knew.

  During our many visits together we discussed the tough questions most people ask when tragedy strikes: Why does God allow suffering? Where is God in all of this? Most importantly, why Hunter? Mark didn’t always have an answer, and he never tried to appease my doubts with empty platitudes. “I don’t know why God is allowing Hunter to go through all this,” he’d say, “but I do know that God is real and He loves you. He loves Hunter more than you can imagine.”

  “How do you know how God loves?” I’d ask.

  “Well, first of all, the Bible tells us in the book of John that God loves us so much that He gave His one and only Son for us. If we believe in Jesus and all that He has done for us through His death on the cross, then not only are our sins forgiven, we will eventually spend eternity with Him.”

  Mark was always mindful not to go too far or get too deep. I hadn’t yet accepted Christ as my Savior and didn’t fully understand what that meant. And like many non-Christians, I was intimidated and uncomfortable with all the Jesus talk, and he knew this. My body language and facial expressions said it all.

  Thankfully, Mark knew when he was in danger of going overboard. Even so, during most of our conversations I found myself craving more. I longed for more of Mark’s hope, more of his uncommon joy. Although I struggled with the born-again thing, my desire for heaven and the God behind it all deepened with every conversation.

  He and I spent a lot of time talking about a “righteous man” named Job, found in the Old Testament book named after him. The unprecedented amount of pain and heartache Job and his wife had to endure led to some deep conversations about loss and grief. “I can’t even imagine what that must have been like for Job,” I told Mark. “I love Erin and Hunter so much. The thought of losing them scares me to death. Job lost all ten of his children.”

  Of all the things that Mark said, there’s one thing I will never forget for as long as I live: “Jill, as much as you love your children—and I know you do—you will never know what real love is until you know the love of God through His Son, Jesus.”

  Initially I was offended and couldn’t imagine a love greater than a mother’s love for her children—than my love for Erin and Hunter. It was impossible for me to grasp at the time. Still, I was intrigued. How could I come to know this greater love?

  Questions like this flooded my mind during Uncle Mark’s visits. However, it wasn’t so much what Mark said as what I saw and how I felt when I was with him. His life overflowed with joy, and his smile was contagious. In the midst of the sorrow swallowing our family, my uncle was like a breath of fresh air. His love for Jesus was intoxicating, radical, and intimidating all at the same time. I wanted what he had and continued to pursue it with abandon.

  Eventually, my search for God took a definitive turn.

  When Hunter was a baby, the winter months in Western New York were horrible for him because of RSV and other nasty viruses to which he was easily susceptible. So we would pack up our entire family and head to South Florida for most of the season. We became snowbirds at an early age and enjoyed every minute of it. My uncle Jim and aunt Patsy lived in Fort Myers, Florida, and did all the house-rental legwork for us so that all we had to do was walk through and decide which house to rent.

  Like my uncle Mark, Jim and Patsy were also Christians. Upon returning to their home one afternoon after house hunting, I started sobbing. I think the weight of everything was wearing me down and I just had to let go. Erin was with me at the time, and in her sweet, four-year-old innocence she tried her best to console me. “What’s wrong, Mommy? Everything’s going to be okay, right, Mommy?”

  As she put her arms around me and hugged me, tears continued to flow. I have to be strong. Pull yourself together, Jill. You need to be strong for Erin. The sound of my aunt and uncle approaching roused me to compose myself. It was obvious that I’d been crying, though, and so they probed in their caring way: “Jill, what’s wrong?” Without hesitation I poured out everything I had kept bottled up for so long. The thoughts came tumbling out: “I don’t want Hunter to die. Why does he have to suffer so much? Why won’t God heal him? I don’t understand all this God stuff. If Hunter’s going to heaven, I want to go, too. I want to be there.” As I continued to ramble on desperately, Erin stood next to me and held my hand. I should have sheltered her from my outcry, but I didn’t.

  I was desperate. I wanted hope and heaven so badly I would’ve carried around a five-foot crucifix if I had to. I was tired of running; the anguish of searching had wiped me out. I was down for the count, and my aunt and uncle knew it, so when I finally stopped to breathe, Jim and Patsy motioned for me to come into the living room. “Let’s just pray right now. Jill, God knows what you need,” they said. “You need Him. You need Jesus.”

  I dropped to my knees, and as we knelt down to pray, I looked at Erin. She was crying. The look on her face broke my heart.

  Knowing that I wouldn’t have the slightest idea what to pray, Uncle Jim told me to repeat after him, and so I did. While I don’t remember my exact words, I knew what I felt was real, and I’ll never forget it.

  Now, as I vividly recall those moments on my knees crying out to God, I realize with even greater conviction what I couldn’t possibly have understood then. It wasn’t about how or what I prayed—as if spewing “magical,” spiritual-sounding words could make any difference at all. It wasn’t about my desperation or need for hope. It wasn’t even about acknowledging my sin and repenting, because I didn’t understand the breadth of my sin at the time or what godly repentance was. Nothing I did or didn’t do could possibly alter the course of my life and eternity. I could barely function enough to make sense of the most meaningless of tasks. I was a complete wreck.

  It was just Jesus—what He did and the power of God’s love working through Him to save me… to save our entire family.

  Just Jesus.

  I didn’t find the hope I needed in a husband who was as desperate for that hope as I was.

  I didn’t find God at a healing mass.

  I didn’t discover Him in church tradition I never understood to begin with, or while growing up in parochial school.

  I didn’t find Him in my desperate search for hope and meaning in the midst of all my pain.

  As strange as it may seem, I caught a glimpse of Him in the midst of my son’s suffering.

  I felt Him in the warmth of my tears.

  And oddly enough, I heard His call in the stillness of complete silence. I felt His touch when I dropped to my knees.

  In Jim’s Own Words

  When Jill became a Christian it really didn’t sink in right away. I never hung out with the Christians on the team, so I didn’t know what to expect from her. I remember telling Jill, “You can do whatever you want, but don’t push that stuff on me.”

  It didn’t bother me that Jill had turned to God; I just didn’t want her to expect me to change, too. I heard enough about Jesus in the locker room, I didn’t want to hear it from my wife, too. And I sure didn’t want Him pushed on me.

  I always felt very uncomfortable around the Christians on the team. Though the guys probably didn’t think they were being overly pushy, they were, and I didn’t like it. They weren’t all that interested in me; they just wanted me to become a Christian.

  Except for Frank Reich.

  I knew Frank before he gave his life to Jesus. He was my roommate for road games and we spent a lot of time together. “Frankie J” never pushed his faith on me. It’s a good thing, too, because I don’t think we could’ve worked together if he had.

  Whenever I he
ard the guys talking about God in the locker room I tried to avoid the conversation. I had more important things on my mind, like winning football games and going to the Big Tree (a small bar near Ralph Wilson Stadium) with my buddies after practice. I didn’t have time for all that God stuff. And besides, because of Hunter’s disease, I was mad at God. There was no way I was going to be able to hear people when they said, “You’re a chosen father, Jim. Maybe God picked you to be Hunter’s dad because He knew you would do something about it.”

  I got so sick and tired of hearing that I was a “chosen father.” Even though I knew people were just trying to encourage me, it didn’t make me feel any better. I didn’t want to accept that the son I’d always wanted, born on my birthday, was sick. Knowing that Hunter would never be able to catch a pass from Daddy or suit up in a bantam football jersey crushed me. I had dreamt about all the things I would do with my son. I planned on us going hunting and fishing as fathers and sons do. I wanted to coach his sports teams and teach him the right way to grip a football. Hunter would never be all I had hoped he would be.

  It took a long time for me to realize that good would come from our tragedy. Eventually I did. But even knowing and seeing all the good that came from Hunter’s life doesn’t take away the pain of wishing things could’ve been different.

  Initially I tried to run from it all as much as I could. I had retired from the game I love two weeks before Hunter was born. It was perfect timing, really, because I had plans for our family. Shortly after my retirement, NBC Sports wanted to hire me. At first I wasn’t interested, but after Hunter got sick I needed to do something. My job with NBC Sports had me traveling all over the place doing color analysis for games. After two seasons I left NBC and started working for ESPN. I traveled to Bristol, Connecticut, for the show every week and was often distracted with my responsibilities there. Being away from home took my mind off of everything temporarily but… I still thought about Hunter often and wished I could help him.

  Many times on the road, by myself in my hotel room, I would cry and ask WHY? I wasn’t comfortable showing my emotions, but sometimes I had to let them out… but only when I was by myself. Jill never realized I cared as much as I did because I never showed my emotions in front of her and the kids. That was how I was brought up. You never cry. No way. I was born and raised in a family of six boys. I never wanted to cry in front of my dad or my five brothers, so I didn’t.

  I was hoping for a cure for Hunter. After we went public with his diagnosis, I was hopeful that maybe there was a treatment out there somewhere. But there wasn’t, and Hunter continued to suffer.

  I hated watching my son struggle. It killed me. I tried not to think about it.

  Chapter 6

  Change

  Following Hunter’s diagnosis, my life and the life of every member of our family changed drastically. We soon discovered that change is extremely hard; it rips us out of our comfort zones. Change takes us to unknown places where fear is palpable and the longing for normalcy and the safety of the familiar is consuming.

  Krabbe disease is ruthless. The prognosis is grim and the average life expectancy for a child with Krabbe is fourteen months. Its victims typically suffer from severe and rapid deterioration of mental and motor functions, become deaf and blind, and eventually succumb to the disease as a result of pneumonia or heart failure. As Krabbe progresses and the sufferers deteriorate, the need for specialized medical intervention—as well as various therapies, medications, and medical apparatuses—increases.

  By the time Hunter was a mere four months old, it was already evident that he was unable to achieve the physical and social developmental milestones that infants his age normally do. Hunter’s inability to move on his own kept him from lifting his head, kicking his legs, and reaching with his arms as healthy infants do. Hunter couldn’t swallow either, necessitating his need for a suction machine and feeding pump. Suction machine… what in the world is that? I remember how afraid I was when we were first introduced to the apparatus and taught how to use it. It was horrible. The machine was so loud, and the thought of sucking sputum out of the back of my son’s throat was very unsettling.

  Although the suction machine, feeding pump, oxygen tanks, wheelchair, stander, and other equipment we needed helped Hunter live, the adjustments were difficult for all of us, no one more than Hunter. Eventually we embraced these changes, but it took time.

  As Hunter’s disease progressed and he required intense specialized medical intervention in every area of his life, his extreme needs demanded that we open up our home and lives to complete strangers. By this time I was used to life in a fishbowl; it came with the territory. Throughout most of Jim’s NFL career, and especially during the four Super Bowl years, we could not escape the glare of the spotlight. But this was different—it was our home. It was our son, our family, and we didn’t know how to handle life and cope with a desperately sick child. We wanted to run away from people, not invite them into our lives and pain. But we were also determined to do anything and everything to help Hunter. If that meant allowing strangers into our home on a daily basis, reluctantly revealing the deeply personal details of the worst time in our lives, then we would.

  When Hunter was an infant, I was initially reluctant to let anyone other than my mother hold him. Even Jim got reprimanded a number of times for not holding him the right way. I was radically overprotective—to a fault. But my son’s deteriorating health required the specialized care of professionals. I had the hardest time letting other people take care of Hunter, but he needed what I was unable to give. I wanted to do everything for him, but I didn’t know how. Over time I learned to let go—but it wasn’t easy.

  It took an incredible amount of patience for us to adjust to the coming and going of Hunter’s caregivers. He had a tight schedule from the moment he got up until bedtime. Hunter wasn’t your typical sick kid; he had a rare genetic disease most people had never heard of. Our therapists, nurses, and caregivers—our team affectionately known as Team Hunter—were learning, too. We responded to his needs as they arose, and everything depended on how he was feeling. Our home revolved around Hunter, so we learned to hold our agendas loosely. We were all being schooled as we went, and I learned everything I possibly could to better care for him.

  Already on the scene when Hunter was born was Reggie. “Reggamatic,” as we called her because of her Energizer Bunny–meets-old-school work ethic, was one of our nannies. But she was much more than that. Reggie loved Hunter and the girls. She had come to work for us when Erin was a toddler. Jim said that Reggie was like Aunt Bee from The Andy Griffith Show. Her blonde hair was always whipped up into a molded beehive and her make-up was perfect. Whenever she took a break, which wasn’t very often, she would freshen up her lipstick. “You never know when you might get discovered,” she would proclaim with a laugh.

  Reggie spent a lot of time with Hunter. She loved reading to him and massaging his body. Hunter loved listening to Reggie talk and sing, and he always fell asleep when she gave him a back rub. When Hunter was three years old he learned how to communicate with his eyes, a huge breakthrough in helping us care for him. Reggie gets most of the credit for this—she taught Hunter how to blink once for yes, something she takes great pride in to this day.

  Amy, Hunter’s physical therapist, and Kathy, his occupational therapist, were the first to “invade” our home after Hunter became ill. As harsh as it sounds, that’s exactly how we felt initially. Living with Hunter’s disease was hard enough and exposing our pain and inadequacies to complete strangers made us very uncomfortable. I didn’t want to reveal the enormity of our struggles and fears to anyone other than family; it was just too hard being so vulnerable. With the way Hunter and his daily needs consumed me, I was convinced I didn’t have time to forge new relationships or invest in anyone else’s life. Yet somehow, as new members of our growing team shared part of their lives with Hunter, the capacity of my heart grew to accommodate new friendships. Friendships rooted in a
love and camaraderie beyond my wildest expectations.

  Team Hunter was family. We all grew to love and care about each other to a depth that surprised every one of us. We depended on each other to maximize Hunter’s care and learned to work together in a way that allowed the Kelly household to look and feel like home again. It was truly amazing, especially because our team consisted of all women—except Hunter and Jim, of course. How we were able to keep the emotional estrogen roller coaster in check (for the most part) is a mystery for sure.

  Don’t get me wrong; we all had our moments, or days, and they weren’t pretty. But the respect and love we had for each other in our determination to provide Hunter with the utmost care possible kept us from allowing this world’s burdens and the issues of our individual lives to hinder our team efforts. Hunter needed us to focus, to work together, to love and live and spread joy. Somehow—we did.

  In Jim’s Own Words

  After we found out that Hunter would need nurses and therapists around the clock, I realized that our household had to adapt. And that adjustment was hard—very hard. I had always tried to maintain some sort of privacy throughout my NFL career. But it was almost impossible. Cars would inch by my house hoping to get a picture. Some people would even come up and peek through the front windows and then drive away. It really got ridiculous at times.

  When Jill and I started a family, I became even more protective of our privacy. But that all changed when Hunter got sick. Someone was always at the house. Very seldom did we have dinner with just us because there was always at least one other person—and sometimes two—around. I used to joke with Hunter and say, “We’re surrounded by a bunch of hens again, HB.” And we were. It was just me and Hunter and a bunch of women. We were completely outnumbered, which was difficult for a lot of reasons.