by Jill Kelly
At first it really bothered me that Jill and I could seldom be alone by ourselves or with our kids, but I got used to it. In fact, there were so many people coming in and out of the house that I eventually told everyone not to ring the doorbell anymore.
It didn’t take long for me to realize how important Team Hunter was to our entire family. We really were a team, and even though I wasn’t leading the way, I knew my son was getting the best care possible. Of course I wished the circumstances were different, but Team Hunter touched all of our lives in many special ways.
While not a therapist, nurse, or professional caregiver, there was one very special person who became a vital part of Hunter’s life and whose contribution to the change we all experienced was like an unexpected treasure. His name was Robert. Robert was the son of Elizabeth, Hunter’s physical therapist after Amy left to have a baby. When Hunter was three, Elizabeth brought Robert over to play, and a most extraordinary friendship was born.
Robert had no problem getting right down on the floor with Hunter and playing as if his heart would burst. Laughter would ring through the house when the boys were together, and there was no end to what they would dream up to do. The boys were�� boys, in the greatest sense of the word. Through Robert, Hunter could do all the things he wanted to do; through Hunter, Robert could imagine the most wonderful adventures. They were connected in a profound way, in the way that really matters. They were connected by love.
Here are Robert’s thoughts, in his own words, about his friendship with Hunter.
My mom is a physical therapist and started seeing Hunter when we were both babies. Before we even met, we started sharing our toys, using my mom as a shuttle service. I’d send some dinosaurs with her to use during therapy with Hunter, and he would send some Rescue Heroes back. When I was three, Mrs. Kelly invited me to come over during therapy to play with the toys in person. I was sort of nervous because I didn’t often meet kids, but I was also excited because I wanted to make a new friend. When I walked into the house, I hid behind my mother. Then we went into the playroom where Hunter was. I peeked out and saw Hunter. As soon as I saw him, I thought he was a good guy and hoped we would be great friends.
I realize now that our friendship was really special, but at the time Hunter was just a regular kid to me. Being friends with Hunter wasn’t different than being friends with any other kid on the block. He couldn’t talk, but he certainly didn’t have any trouble letting me know what he wanted to play. He’d blink his eyes or keep them wide open. He even waved to me a few times.
We did all of the things kids do—we played, talked, watched movies, read books together, and had lots of fun. We built forts in his family room and shone flashlights on the ceiling. We played card games. I couldn’t read Hunter’s mind or anything, but he seemed to really have fun when we were together.
My favorite day ever with Hunter was when we were outside on the deck playing with Silly String. We were playing Spider-Man and had these super-cool web-shooters. We both sprayed each other, then we sprayed Hunter’s nurse, then my mom, and then we had fun spraying Hunter’s little sister, Camryn. I didn’t have a little sister, so Hunter shared his with me. We had a great time! There was Silly String everywhere, but mostly on Camryn.
There were lots of ways Hunter and I were the same:
• We were the same age (almost).
• We were the same size. (We measured—but my feet were bigger.)
• We both liked horses, Spider-Man, and football.
• We were both smart and liked to read good books.
• We were always happy to see each other.
There were also some ways that Hunter and I were different:
• He had Krabbe Leukodystrophy; I have food allergies.
• He had a dad who was a famous football player; my dad is just a regular guy.
• He was older than me by six months. (See above.)
• He liked to wear his hair spiky; I kept mine flat.
• My head was bigger (physically, not mentally).
• I wore glasses; Hunter didn’t.
Sometimes, I would try out some of Hunter’s special equipment to make sure it was okay for him. I did that because I loved him and didn’t want him to get hurt. It was cool going into his equipment. I especially liked trying out the Trixie Lift, which was a kind of roller-coaster ride with Hunter at the controls. Funny—he had no interest in riding the lift himself—he merely wanted to take me for a spin. I tried out his new wheelchair, too, and let his mom take me for a ride in the new van so she wouldn’t be as worried about Hunter when it was his turn.
That’s what friends do, and Hunter was my best friend.
What an amazing young man.
Robert’s words make me cry and yet fill me with great joy. They remind me that while change is difficult, it can also be the uncharted pathway to uncommon joy and unexpected miracles.
Hunter taught us how to live with change and anticipate it. Change we grudgingly succumbed to kicking and screaming… and change we somehow welcomed with open arms. He taught us that the unknown doesn’t always have to be scary. Though initially fearful, we learned to expect and embrace the uncomfortable and the unfamiliar. We learned to surrender the need to control because so many things were out of our control. And even though we didn’t know what the unknown held, we learned to trust the One who holds the unknown.
Chapter 7
Hunter and His Sisters
A few months after Hunter was diagnosed with Krabbe disease, we had Erin Marie tested. Dr. Duffner wanted to determine whether or not Erin was a carrier of the deficient gene.
At first I was reluctant and anxious. Even though Dr. Duffner assured me that it was highly unlikely that Erin could have the disease, I was scared to death. When we took Erin to Children’s Hospital to have her blood work done, she was such a big girl. Almost three at the time, she didn’t fully understand what was going on or why they had to stick her with a needle to draw blood. But she walked in with confidence and didn’t flinch or cry throughout the entire process. I was amazed at her demeanor and proud of her for being so courageous.
A flood of dreadful outcomes crossed my mind as we waited to hear the results. I imagined Dr. Duffner calling us into her office again to tell us that Erin, too, had Krabbe Leukodystrophy. Waiting was horrible. The longer we had to wait, the more anxious I became. Finally, after what seemed like an eternity, the phone rang. Reggie answered it and called me from the kitchen: “Jill, Dr. Duffner’s on the phone.” Erin and Hunter were cuddled next to each other on the living room couch watching Franklin the Turtle. Erin’s treasured “fruit blankie” was spread out evenly between them and her “juice ba ba” was tucked between the couch cushions. (Whenever they snuggled she made sure everything was perfect.)
My heart started to race as I hopped up from the couch and went into the kitchen. Reggie handed me the phone and kept the kids occupied so I could talk in private. Dr. Duffner was not much for small talk and got right to the point: “Jill, Erin is not a carrier. Her enzyme levels are completely normal, so she’ll never have to worry. This is great news, isn’t it?” Then she softened and added, “So, how’s my Little Rabbit doing today?”
Dr. Duffner had nicknamed Hunter “Little Rabbit” months before. She was very affectionate toward him, and her bedside manner was always gracious and loving.
After I hung up the phone, I ran into the bathroom to compose myself so Erin wouldn’t see me and ask, as she often did, “Why are you crying, Mommy?” My tears came freely, and they were mixed with emotion. I was thankful to hear the good news, and yet, at the same time, my heart ached for Hunter. Why did he have to suffer?
Although Jim and I spent very little intimate time together because of the bitterness eroding my heart, still, we both desired to have more children. We were terrified, too, of the possibility that we might conceive another child with Krabbe disease. Yet our desire for a baby outweighed our fear and we tried anyway. And somehow we managed
to be alone enough to get pregnant with our third child.
On October 21, 1998, I took two pregnancy tests (just to be sure!) and wrote the following in my journal that day:
I’m pregnant! I can hardly believe it. I’m excited and yet sort of scared. Erin and Hunter need a brother or sister. This is going to be wonderful—I just know it. I’ll have to start taking better care of myself. So many thoughts are flooding my mind right now. If it’s a boy—I like Noah James Kelly. I love how that sounds. When I asked Erin Marie what she would name the baby if it were a girl, she said “Casey.” I don’t think so.
Wait till Jim finds out. He really wants us to be pregnant again. He’ll be so excited. I told my mom, and of course we both cried. God has blessed us with another baby. I hope the baby will be okay. Whatever happens, happens—He will be with me every step of the way.
I just looked over at a pillow in Hunter’s room that has “Trust in the Lord with all your heart” embroidered on it. I will! This is going to be great! I just know it is!
When I was about four months pregnant, Dr. Duffner suggested we have the baby tested through amniocentesis. Because we’d already had a child with Krabbe, we were able to find out before the birth of any subsequent children whether or not they have the disease. With every child Jim and I have there is a 25 percent chance that he or she will be born with Krabbe disease and a 50 percent chance that the baby will be a carrier.
Unfortunately, we lived in the spotlight. So when it became public knowledge that I was pregnant with our third child, incredibly, we received some nasty letters. We were stunned by the cruelty of some of the comments. People found it necessary to tell us that they thought our having another child was a disgrace and that we should be ashamed of ourselves for taking the risk.
What were we supposed to do? Get an abortion? Stop having children? We felt it was incredibly arrogant and sad that people who have never walked in our shoes found it so easy to pass judgment. And as much as we might have wanted to respond to the irresponsible comments, it wouldn’t have made any difference. People are people. Besides, how could they have possibly understood the inconceivable joy Hunter’s life brought to our family? How could those who only read or saw the portion of our lives framed by the media actually know the bigger, almost indescribable, reality?
As crazy as it may sound, I didn’t stress out over the outcome of the baby’s test results. I had an unexplainable peace throughout my entire pregnancy.
Our family was in South Florida when we got the word. I’ll never forget that day. Just thinking about it makes me cry.
It was a gorgeous, sunny afternoon with a gentle breeze drifting in off the Gulf of Mexico. While Jim and my dad prepared the grill for dinner, the rest of us were hanging out at the beach. Hunter loved the ocean. And even though we had to keep him out of the sun as much as possible, he still enjoyed the sand and the waves.
Erin was busy building a sandcastle and Hunter was relaxing on a lounge chair under the cabana with Grammie when my grandfather shouted down to us from the wooden walkway, “Jill, your doctor’s on the phone.” I jumped up from my chair and ran to meet him. Waving the portable phone as he handed it to me, he said, “Jill, it’s Hunter’s doctor, Dr. Duffner. It’s something about the baby.”
As soon as he said “baby,” I felt faint. A profound peace about everything had enveloped me until the moment Grandpa Jack handed me the phone. With one hand on my belly and the other holding the phone, I stood there as a rush of anguish swept through my entire body and fear slammed into my heart. What if the baby has Krabbe disease? I put the phone up to my ear and heard myself weakly stammer, “Hello.”
Without hesitation Dr. Duffner declared the good news: “The baby is fine, Jill. She is a carrier, but her enzyme levels are near normal.” Before she could say another word, I interrupted and asked, “Are you sure? Are you sure she’s going to be okay?” As Dr. Duffner continued to reassure me, I started sobbing. After I hung up the phone I walked back toward the cabana where Hunter and my mother were sitting.
I was overjoyed and thankful about the news, but despair and sorrow unfortunately crept in and covered my heart. Why Hunter? Why our only son?
I didn’t want the kids to see me crying, so I quickly pulled myself together before rejoining the family. Confused and overcome by the intense pain and joy of the moment, I was silent when I first sat back down. My mother knew I didn’t want to say anything in front of Hunter. I didn’t want him to feel bad, so I knelt beside him, wrapped him in my arms, and just held him. It was bittersweet. I was so thankful the baby (who turned out to be Camryn) was going to be okay, that she was just a carrier. But at the same time, my heart was crushed all over again for Hunter.
One of my greatest challenges was making time for all three kids. I made every effort to spend as much time as possible with my daughters, but Hunter’s needs often required immediate attention, so inevitably I spent more time with him. I struggled with guilt and fervently prayed that God would help me to balance my time and energy. Even though I did the best I could, it was very hard and emotionally draining.
At least once a month I tried to set aside a special day for each child. We named our special days “Mommy & Erin Day,” “Mommy & Hunter Day,” and “Mommy & Camryn Day.” When it was Mommy & Erin Day, Erin got to choose what we did from start to finish. If she wanted to go to the movies, we went to the movies. If she wanted to go to the playground, we went to the playground. It was her time with Mommy to do whatever her heart desired.
Depending on what was easiest for Hunter, my mother would either take the other two kids to her house, or she would watch them at ours. We did whatever we had to so that each child’s special day was loaded with fun. I looked forward to those days so much. Yet in spite of our efforts to bring some sort of normalcy into our children’s lives, their lives were far from normal.
We tried to include the girls in Hunter’s daily activities and therapies so they understood how to work all his machines and pumps. As a result, many times Erin and Camryn would pretend their baby dolls had Krabbe disease. As apprehensive as I was about letting them use Hunter’s supplies for play, I couldn’t help but encourage them. There was something beautiful, though painful, in watching my daughters mimic what I struggled to do every day.
Their babies were tube-fed and suctioned, just like Hunter, so they needed feeding bags, syringes, and suction machines. I’d tape the end of the feeding bags to their babies’ bellies so they could pretend like they were really giving them food. Rather than using formula, as we did with Hunter, the girls filled their dolls’ bags with water.
They had watched us enough to know exactly what to do with everything, including the oxygen. Although positioning the nasal cannula inside the dolls’ little plastic noses and around their ears was a challenge, we managed. I also let the girls attach oxygen tubing to empty tanks. And while the tanks weren’t that heavy, watching little Camryn strap one over her shoulder and lug it around was humorous and heartwarming.
The girls had hours of fun with their Krabbe babies. I didn’t want to interrupt their playtime, so I’d watch them from a distance and listen.
“What’s your baby’s name?” Erin would ask her sister.
“Her name is Courtney,” Camryn would respond joyfully, “and she’s very sick because she has Krabbe disease.”
“Oh, my daughter has Krabbe, too,” Erin would reply. “When was Courtney diagnosed?”
“Well, we found out that she was sick a couple of weeks ago. What about you?”
“My baby had Krabbe when she was born,” Erin would say, cradling her doll. “Does your baby get chest therapy?”
As kids often do, they carried on for hours. While I watched them play, I wondered what Hunter was thinking as he listened to his sisters. I often pondered over how extraordinary it was that my daughters chose to pretend that their dolls were sick rather than healthy. Was that their way of expressing their love for their sick brother? Or in some strange way were
they revealing their pain in the only way they knew how?
Little did they know or understand how difficult it was to take care of Hunter. And yet maybe the incredible joy we all felt blinded their eyes to the crushing pain.
Camryn was very affectionate toward her older brother. It didn’t even cross her mind that she might be a little too rough with him. From the time she could toddle around on her own, she always made her way over to wherever Hunter was. Whatever he was doing, Camryn wanted to do, too. Like a little shadow, she constantly wanted to be next to her big brother. If Hunterboy was lying down, stretching and exercising, she was, too. If he was upright in his stander, she wanted to be strapped in when he got out. If Hunter had school, Camryn wanted to learn, too. Hunter’s therapists, teachers, and nurses were patient and mindful of Cam’s desires and tried to include her as much as possible.
A few times, to our amusement and dismay, Camryn tried to get a little too involved in Hunter’s care. Once we caught her on camera trying to give her brother chest therapy. With percussor in hand, she laid her head next to Hunter on the couch and put her hand on his back. If we hadn’t intervened, I’m sure she would’ve started pounding away. Oddly enough, I think Hunter would’ve liked it, at least for a few minutes.
He loved his sisters. Whenever the girls were around, Hunter would raise his eyebrows and his eyes would light up and sparkle. His body also seemed to relax whenever his sisters would snuggle up next to him. An indescribable, unspoken love radiated from my children whenever they were together. Watching them was truly incredible.
As day after day, month after month, and then year after year went by, I could see that the girls were developing emotionally and spiritually in a way few children get to experience. A significant part of who the girls were, and who they are today, is because of their incredible relationship with their brother, Hunter. God was allowing them to vicariously experience the physical pain of suffering while at the same time allowing them to actually feel the intensity of unconditional love. They daily witnessed what disease can do to the frail human body, and as a result they appreciated the blessing of every breath.
