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

by Jill Kelly

What I remember most vividly about the ceremony is really what made the day unforgettable: Jim choked up when he said his vows. Jim’s not one for showing his emotions, so when he had trouble maintaining his composure, I was shocked and humbled. Could it be that Jim actually means what he’s saying—in good times and bad, till death do us part? Do I mean it?

  After the bridal kiss and our presentation as Mr. and Mrs. Jim Kelly, we made our way to the city of Buffalo’s breathtaking waterfront and lighthouse for pictures. Believe it or not, we had so much fun that both photographers neglected to take a single photo of my mother and me together—go figure. Maybe they were having a little too much fun. In any case, after the pictures we headed to the New York State Armory for the much-anticipated reception. The site was an old military storage base being used by a local unit of the New York National Guard. The historic landmark, located on Connecticut Street in the heart of Buffalo, looks like a small castle. It was the only local facility available that could accommodate the number of guests we had.

  For security purposes and to protect our privacy, guests were required to present a numbered invitation to enter the reception. The rustic old building was flanked with security and media as the wedding-goers filed through the front doors. Meanwhile, Jim and I snuck in through a private entrance.

  All the pomp, pretense, and splendor of the entire event made me laugh. You would’ve thought we were the prince and princess of Buffalo. At that time, oddly, I guess we were.

  The Armory had been transformed into a splendid alabaster sanctuary. Tables and chairs were dressed in crisp white linen, and an elegant floral centerpiece accented each table. The aroma from hundreds of flowers infused the entire building. A beautiful archway display of fresh white roses and twinkling lights greeted each guest as they entered the cathedral-like main room. Everywhere you looked, the room seemed to dance and sparkle.

  In the midst of ice sculptures, mounds of fresh shrimp and raw seafood, butler-passed hors d’oeuvres, carving stations, and many mouth-watering delicacies, our wedding cake stole the show. Jim had been determined to design our cake. So much so that he spent time drawing exactly how he envisioned it should look. With the help of Carolyn—a very sweet and patient pastry artist—our dream cake became a reality.

  The incredible dessert, made for an army (or a football team), stood more than seven feet tall and weighed over five hundred pounds. Each of the nine tiers was a different flavor of cake, including white, chocolate, various cheesecakes, and even carrot. Its smooth fondant surface featured sugar vases filled with cascading roses and other flowers made of frosting.

  I don’t know how Carolyn got our cake from her bakery to the wedding reception, but she did. Unfortunately, the only taste I got was the portion Jim shoved into my mouth after we did the traditional cutting of the wedding cake. Even smeared all over my face, it was luscious, and yes, Jim’s face was covered with cake, too.

  For me, the public attention our ceremony and reception received paled in comparison to the beauty and wonder of it all. Our wedding day truly was perfect… except for one thing. Jim’s mother, Alice, had passed away barely a month before our wedding celebration.

  Mrs. Kelly fought a very long, cruel battle with emphysema, and the entire family was at her side the moment she took her last breath. In her honor, Jim danced with our one-year-old daughter, Erin, to his mother’s favorite song, “Memories (The Way We Were)” by Barbra Streisand. The beauty of the moment helped ease the sting of our loss, but Alice Kelly was dearly missed.

  After a two-week, whirlwind honeymoon in Italy, we couldn’t wait to get home to Erin Marie. Fourteen days is a long time to be absent when your baby is growing so rapidly. My parents made sure Erin got the royal treatment while we were away. “Grammarazzi” (like paparazzi, a humorous nickname we christened my mother with because of her obsession for taking pictures) conducted many photo sessions of “Princess Kelly” decked out in all sorts of adorable outfits.

  As you’d expect, everything Erin did was incredible in our eyes, and like most new parents, we were overly enthusiastic whenever our firstborn attempted anything. She was always the star of the show and demanded our undivided attention—which we were happy to give. Once all the wedding excitement was over, our new normal as a family began: Jim resumed his hectic workout and travel schedule, and Erin and I hung out the rest of the summer. Daddy wasn’t home that much, so the two of us did a lot of girlie activities together.

  I went into marriage full of starry-eyed expectations and consequently found myself disappointed in Jim and our relationship more often than not. I had known what I was getting myself into as far as the overall lifestyle of an NFL star, but I was hoping that somehow our marriage would change things. Now that we were actually newlyweds, I imagined that Jim would want to spend more time at home with Erin and me. Unfortunately, that was just wishful thinking, and Jim spent most of that first summer of our marriage traveling. I often wondered where he was and tried to stay on top of his ever-changing schedule, but it wasn’t easy.

  One of the responsibilities I appointed myself that summer was to clean house. Not just the usual vacuuming and dusting, but giving our home a major overhaul. As part of that task, I was determined to get rid of the remnants of Jim’s bachelor life. I descended on drawers full of letters, cards, female garments that didn’t belong to me, as well as pictures of pretty girls—some with clothes on and some without. Some of the items I discovered were shocking. In fact, I remember thinking to myself… And this is someone’s daughter. What a shame.

  How awkward I felt. I wanted to make our house a home. A normal home. A secure and special place for our daughter to grow up. Yet it was becoming apparent that there would be nothing normal about being married to Jim Kelly.

  As I sorted through drawers and closets full of stuff, I found myself growing increasingly angry with Jim. His past, and the baggage that went along with it, was everywhere. My relationship baggage was history; I had just assumed Jim’s would be, too.

  If anyone should be purging the past, I reasoned, it should be him. But he wasn’t the one sifting through this stuff. It was me, his wife. Not even three months into our marriage, I was the one spending afternoons cleaning skeletons from my husband’s closet.

  Skeletons that he should have handled before the wedding.

  Skeletons that filled my mind and heart with jealousy, fear, doubt, and mistrust, simply because they were still there.

  What a great start to an already-fragile relationship, I thought to myself.

  The leftovers from his bachelorhood, coupled with my unfulfilled expectations, slowly began to harden my heart, and the shadow over our relationship darkened. I grew so bitter and defensive that every time Jim walked through the door, I allowed my ever-growing negativity toward him to take over.

  Then, once again, it happened: my period was late. This time I knew exactly what to do and was very excited to discover the results—positive. The timing was uncanny. After calculating the days, the doctor determined that the baby was conceived during our honeymoon. What perfect timing.

  Maybe this child would be the one to draw Jim back home, away from all the distractions and temptations he was so caught up in. I could only hope.

  Erin watched my belly grow as nine months flew by, unaware that she was about to have a baby brother. (In my defense, if I was going to keep it a secret from her dad, she certainly couldn’t know either!) I had lots of fun preparing for our son to arrive. Granted, I had to be covert about everything, but buying all sorts of baby boy clothes and toys was a blast. Hiding them, on the other hand, was a challenge.

  Fortunately, my little surprise remained a surprise until that day in February 1997 when Hunter James Kelly was born. Jim’s birthday and Valentine’s Day would never be the same. Little did we know how drastically our lives would soon be changed as well.

  Chapter 4

  Broken

  I’d like for you and Jim to come into my office so we can discuss Hunter’s test r
esults. Can you come on Monday?” Dr. Duffner asked in a monotone voice.

  “Yes. What time and where?”

  Our conversation was so short and to the point that it didn’t even dawn on me to ask her the results over the phone. Then, when the phone hit the receiver, it hit me. If Hunter’s blood tests were normal, Dr. Duffner would have said so.

  But wait. Hunter had passed all the newborn tests with flying colors. God had given us a beautiful, healthy son. So what was going on?

  The first month of Hunter’s life, he appeared to be a normal, healthy baby except for showing some signs of colic. The second month, he became more irritable; and by the end of the third month, he was spending most of his waking hours screaming. Our pediatrician continued to believe it was colic, so we tried practically every formula and bottle on the market. When Hunter became even more irritable—stiffening his arms and legs, and failing to achieve any developmental milestones—the doctor said he was showing signs of cerebral palsy. We were devastated but determined to do everything we could to give Hunter the best life possible.

  In Hunter’s fourth month, his body became more rigid. He was having trouble swallowing, and he started experiencing mild seizures. Because Hunter’s health continued to decline, our pediatrician suggested he go to a child neurologist. Hunter’s neurologist, Dr. Duffner, decided to test his blood. Now she was asking us to come to her office to discuss the results.

  “Something’s wrong,” Jim said after I shared the phone conversation with him. “If it were good news, she would’ve told you over the phone. This isn’t going to be good.”

  My mom stayed at the house with Erin and Hunter while Jim and I made the trip to Children’s Hospital that Monday morning. The beauty of that summer day was clouded by the gut-wrenching feeling that Jim and I both had. Lost in our individual thoughts, we said nothing to each other as we traveled into the city.

  When we arrived at Dr. Duffner’s office, Jim’s brother Danny was waiting at the entrance to walk in with us. We were greeted and escorted into a dim room where Dr. Duffner and our pediatrician stood. Why is our pediatrician here? That’s not a good sign, I thought to myself.

  As we exchanged hellos, it was obvious that something was dreadfully wrong. Looking around at all the sullen faces told the whole story. These were doctors—professionals—but they could not hide their feelings. I sensed an overwhelming heaviness in our midst. My heart felt as though it were beating outside my shirt, and my hands were drenched with sweat.

  The small room we were in had no windows. A table was squeezed in amid shelves of old textbooks, leaving barely enough room for any of us to sit. The room was damp and smelled very musty and old. It was such a nondescript and lifeless place that it was easy to imagine no one ever got good news here.

  Once we were seated Dr. Duffner explained what type of blood tests she took and exactly what she was looking for. She then proceeded to detail where Hunter’s blood work was sent, who tested it, and why. It was all very foreign to us.

  Just tell us! Just tell us! I thought. What’s wrong with Hunter? What’s hurting him?

  Finally, she said, “Your son has been diagnosed with a fatal genetic disease called Krabbe Leukodystrophy. There is no treatment for this disease and no cure. The average life expectancy for babies diagnosed with infantile Krabbe is fourteen months. Hunter will probably not live to see his second birthday. We can help you make your son more comfortable but—”

  I had to interrupt. “What do you mean, there’s no treatment? There’s got to be something we can do—somewhere we can take him.” The thought of there being no help for our son—for Jim Kelly’s son—was unfathomable.

  “There is nowhere to take your son because there is no one working on this disease,” Dr. Duffner explained. “He will need to get a feeding tube as soon as possible in order to eat, if that’s what you choose to do.”

  Her words felt like daggers penetrating my heart, and they kept coming, one right after another. A feeding tube? What’s that and why?… What does she mean, if we choose to? We’ll do whatever it takes for Hunter. He needs to eat; we can’t just let him starve to death…. What is she trying to say? My mind was on overload, racing with questions, full of fear and confusion.

  Dr. Duffner reiterated, “No one is doing anything for this disease. It is rare, and very few people know anything about it. Dr. David Wenger, a doctor in Philadelphia, assured me that nothing is being done anywhere. If you’ll excuse me….” She got up and walked to a desk in an adjacent room.

  Though I was completely numb, I watched Dr. Duffner’s every move as she proceeded to pick up a phone and make a call. I couldn’t hear what she was saying, but I was very attentive to her facial expressions, gestures, and body language—it wasn’t good news.

  After she hung up, she returned to the table, sat down, and explained, “That was Dr. Hugo Moser from the Kennedy Krieger Institute,” she explained. “He is a world-renowned doctor working on ALD–adrenoleukodystrophy—a different type of leukodystrophy. I wanted to ask him if he knew of anyone doing any type of treatment, even experimentally. He said no.”

  She paused, then continued: “I’m so sorry. I will do everything I can to help your son. But the disease has already progressed so fast that I don’t think he will live much longer.”

  As my mind tried desperately to process all the horrific news that had just been dropped into our lives, my body felt weak and lifeless. Tears started streaming down my cheeks and my head was throbbing. I sank into my chair as if I weighed a thousand pounds. It was hard to catch my breath; I felt as if my very life was being choked out of me.

  This can’t be happening. Not to us—not to Hunter….

  Jim remained very calm, not shedding even a single tear. I suppose he was trying to be strong for my sake.

  Before we left the neurology office, Dr. Duffner gave us some additional information, and then we scheduled a preliminary appointment for Hunter’s feeding-tube surgery.

  The ride home was horrible. The frustration and fear of the unknown weighed so heavily on my heart that I just wanted to run away and be by myself. Desperation like I’d never imagined swept through my body and bombarded my mind with overwhelming dread. What are we going to do? I thought as I stared out the passenger window. Isn’t there someone out there who can help us? My amazing, beautiful son is dying. This can’t be happening. It can’t be true.

  Life all around us continued to rush by as we drove home that morning, helpless and hopeless. People were hurrying to and from work, visiting each other, laughing over lunch. They were going about their normal day, while our lives had just been turned completely upside down.

  I wanted to scream, “This isn’t fair! Could all of you just stop for one minute and everything stand still?”—because all I knew as life had come to a screeching halt.

  Jim stayed quiet. What could he say or do? He was just as confused and frightened as I was.

  In Jim’s Own Words

  I was numb and shocked. I didn’t want to believe it was true. I didn’t know what to do. It just didn’t seem real. Hunter looked good; except for all the crying, he seemed healthy. There was no history of disease in my family or in Jill’s, so where did something like this come from?

  At first I was ticked off at everything and everybody—especially God. Why did my son, born on my birthday, have to be sick? And not just sick. He was dying, and there was nothing I could do to help him. Nothing. How are you supposed to just take your son home and watch him deteriorate? Watch him die? I wanted to do something, anything. But what?

  We’re Kellys—we don’t give up. We don’t ever give up…. I wasn’t going to let Hunter go without a fight…. He’s my son, my only son…. But there was absolutely nothing I could do to make him better.

  When Jim and I returned home from the doctor’s office, my mother was waiting for us. I gave her the details of the test results.

  “There must be a mistake,” she proclaimed with confidence. “I don’t believe i
t. There has to be something we can do. I want to talk to the doctor myself.”

  As my mother went to call Dr. Duffner, I sat on the couch with Hunter and wept. Erin was very confused. “What’s wrong, Mommy? Why are you crying?”

  How do you explain the unexplainable to a two-year-old? How do you tell a child that her brother is going to die? Is there a way to communicate pain that you can’t comprehend yourself?

  As I sat drenched in tears, cradling Hunter in my arms, Erin snuggled up next to me and whispered, “Everything’s going to be okay, Mommy. Everything’s going to be okay.”

  Little did she know that everything was not going to be okay. Our lives would never be the same.

  Chapter 5

  Searching for Hope

  When Jim and I were told that our son would not live to see his second birthday, my quest for hope began. I was on a desperate search for treatment and a cure, aching for even a shred of hope and some sign of the God I thought I knew growing up.

  Our family had plunged into a wilderness of despair that every parent fears. I was convinced help was out there, but where? Who could rescue us and give us some hope to cling to?

  Though he might have wanted to, it was pretty obvious that Jim couldn’t save the day for me or our family. If anything, Hunter’s diagnosis only made the problems in our marriage and family all the more evident.

  After Jim retired from the NFL and Hunter got sick, I assumed Jim would be around more. His work as a color analyst for NBC (and later, ESPN) necessitated a lot of travel. Still, I thought he would make a way to be with us as much as possible. When he didn’t, my resentment grew and bitterness wrapped its vicious, unrelenting coils around my heart. Every time Jim would come home, those coils would tighten, paralyzing what little love and respect I had left. (No wonder the divorce rate is so high for professional athletes, let alone professional athletes with a terminally ill child. The deck was stacked against us big-time.)