by Jill Kelly
As time went by, we all seemed to forget that he was dying from a horrendous illness. In fact, my mother and I had actually discussed getting some more blood work done, just to confirm the diagnosis. Hunter was beating the odds. He was living.
So at that moment, taking care of that frail, helpless little bird took on new meaning. As the creature struggled for every breath, I thought of Hunter and the sound of his breathing. Hunter didn’t have a normal breathing pattern. When Hunter’s lungs were clear, his breathing was big and full. But often, because of his inability to swallow, he would gurgle a lot with every breath. His gurgled breathing was like sweet music to my ears, especially during the night. My head was usually about a foot away from Hunter’s. I slept as close to him as I possibly could so that I could hear every breath.
The tears streamed down my cheeks as I remembered these things and tried to comfort the beautiful little bird in my hands. He was still alive, but his breathing had grown very shallow. I continued to gently stroke his feathers; they were so soft and vibrant. Like Hunter’s skin.
His skin was amazing; so soft and white, like a newborn baby’s. It was so unique that after we laid him to rest, the funeral director—a family friend I used to babysit for—commented, “Hunter had the most beautiful skin I have ever seen.” I recalled Hunter’s little brown mole on his right hip and the tiny scar on his belly from where his feeding tube had been inserted. Other than that, his entire body was unblemished.
And then I remembered his hands. Even his hands were special. One of the disease markers for most Krabbe children is the clenched fist. But Hunter’s hands weren’t like that at all. We massaged his hands constantly, elongating his chunky fingers. To keep him from drawing his fingers into a clenched fist, we made sure he was always holding a soft stuffed animal or blanket.
I always wanted his hand in mine. My memory at that moment was so vivid that I could almost feel his strong grip. After a long night of hand-holding, he usually wouldn’t let go in the morning. Whenever I would say good-bye and try to walk away, he’d squeeze my fingers. He didn’t want me to leave. I never wanted to leave him either.
And I didn’t want the little bird I was holding to leave. But it did, and the profoundness of the moment wrapped itself around me. Although I was not with Hunter when he took his last breath, God was. Somehow, the privilege of holding that helpless bird while he took his last breath, and the precious memories the experience provided, began to mend my broken heart. It was a moment of grace I knew I would never forget.
Chapter 16
“My Heart Doesn’t Look
the Same Anymore”
My heart doesn’t look the same anymore, Mommy.” My ten-year-old daughter, Erin, tilted her head and started to draw a broken heart with her fingers in the air. “It looks like this, and it has a big hole in it. Because Hunter’s not here, I have a huge hole in my heart that can’t be filled.”
A fresh wave of grief swept over me as I grabbed my daughter and hugged her. I had been praying that God would show me how to help my daughters in their grieving. They dearly loved their brother. I could only guess what their little minds and hearts were thinking and feeling. I laid my head on Erin’s, and we both started to cry.
“I’m nothing without Hunter, Mommy.” She spoke exactly what I felt. “I am who I am because of him. I know Jesus because of Hunter.”
“Someday your heart will be full again, Erin, someday….”
I felt so inadequate. What could I say or do to comfort my daughters when I needed to be comforted? We all needed comfort. The mother in me wanted to take away their pain. Yet I knew they had to experience loss and walk through grief, too. They needed to learn what only a broken heart could teach, but it was so hard watching them, even knowing that somehow it was for their good.
In the days following Hunter’s death, Erin was quiet. She didn’t talk about Hunter very often. In this way she was responding a lot like her dad. Camryn, on the other hand, was very emotional and outspoken. She wore her heart on her sleeve, just as I did.
At bedtime, a little over a month after Hunter died, Camryn asked me, “Mommy, will Hunter recognize us when we get to heaven? How old will Hunter be?” Before I could answer, I was bombarded with more questions.
“When I see Hunter in heaven, will he look like this?” She was holding a framed picture of her hugging Hunter. He had on a baseball hat and was looking right into the camera. It was such a great shot. I remembered when that picture was taken. It was Erin Marie’s birthday party that day, and we’d had a blast.
As we continued our discussion, Camryn boldly exclaimed, “Mommy, I want Hunter to have oxygen in heaven. And I don’t want him to walk there.”
Erin added, “I liked his oxygen, Mommy. It wasn’t a bad thing, and Hunter always looked so cute.”
I tried to explain what I understood to be true about heaven. A biblical discourse wasn’t needed, but a heart-to-heart was. Cam and Erin were just missing their brother.
“Hunter won’t need oxygen in heaven. The only reason—”
Camryn anxiously interrupted, with attitude. “But if he doesn’t have oxygen, he won’t be Hunter. I won’t recognize him.”
I could tell that no matter what I said, it probably wouldn’t make a difference to Cam, but I continued anyway. “In heaven, Hunter doesn’t need oxygen. There’s no disease or sickness there. He’s finally free, Cam. Free to do all the things he never could here. Isn’t that so cool? I wonder what Hunter’s voice sounds like. And what—”
“How did Hunter get sick, Mama?” she interrupted again.
Oh boy, I thought to myself—here we go. I took a deep breath and tried to explain what I didn’t fully understand myself. “Well, honey, Hunter was born without a special enzyme that we all need in our brain. Because he didn’t have that enzyme, his brain didn’t work the way it’s supposed to. We need our brain to work so that we can run and talk and eat and laugh and do all of the things we do every day.”
I paused for a moment as she pondered.
“Why didn’t we just give Hunter what he needed?” she asked.
How I wished it had been that easy.
“Camryn, we did everything we possibly could for your brother.”
I then tried my best to satisfy Cam’s childlike desire to make sense of her brother’s life and death.
Finally she said, “I miss Hunter. And I’m tired. Can we pray and go to bed now?”
I pulled the covers up close to her little face and kissed her forehead. After both girls were snuggled in, I knelt beside their bed and prayed.
While I had been talking with Camryn, I wondered what Erin was thinking. She spoke up a few times during our conversation, but for the most part she just listened. I would discover a couple of weeks later how her young mind was processing everything, when we agreed to share our story with People magazine. If I had known the outcome of the article before the interview, I would’ve never agreed to do it.
In the past, whenever Jim and I shared our personal family struggles with the media, we always had one goal in mind—to encourage families and draw awareness to Hunter’s Hope. In this interview, I didn’t want to talk about losing Hunter because I hadn’t even processed it all yet. Instead, I wanted to talk about his life and the undeniable, indescribable joy our family experienced as a result of it. Yet as much as we tried to accentuate the incredible impact of Hunter’s life, unfortunately the writer focused on the details of his death.
All three of our children had participated in and listened to numerous interviews we’d done throughout the years, but Erin was unusually upset after our People interview. As I hugged her tightly and tried to console her, I thought about what we might have said that would’ve caused her to cry. As much as I could recall, I was fairly confident that Jim and I hadn’t said anything she didn’t already know.
We’d always been very careful about what we said in front of the kids. Although maybe a tad extreme, we made every effort to keep negative talk far
from their innocent, impressionable ears. Life was hard enough, so we tried to protect them as much as possible.
While Jim and I said good-bye to the magazine crew, my mother comforted Erin. As soon as they were gone, I motioned for Erin to come and sit next to me on the couch. Her face was blotchy from crying, and she appeared exhausted. “Honey, please talk to me,” I urged as I brushed her bangs away from her face so I could see her blue eyes.
“Mommy, how come I’m not a carrier like you and Daddy and Camryn? I want to be a carrier of the gene, too.”
I was stunned and didn’t know what to say. Before I could respond, tears filled my eyes.
Erin continued, “I wanted to have a baby someday just like Hunter. What if I wanted to have a Krabbe baby?”
Her words broke my heart. I knew she loved Hunter, but I had no idea how much she had identified with him and his illness.
During the four years following Hunter’s death, Camryn and Erin have been doing well, emotionally and spiritually. Yet they were different ages when Hunter died, and they have distinct personalities. They have kept the memories of Hunter alive in wonderfully unique ways.
While I was writing this chapter, my freckle-faced daughter Camryn insisted on interrupting me. The signs she made and posted on both doors of the office read: “Keep Out Of The Office While She Is Writing. Thanks, 6.” But even with the doors closed and my hands typing away on the keyboard, she couldn’t seem to stay away or follow her own instructions.
“Mommy, you have to come outside right now. There’s something really special I want you to see.”
“Camryn, I’m writing. What is it, honey? Can it wait until I’m done?” I responded with a big sigh as I turned and looked at her.
“I can’t tell you. It’s very special. Come on, Mom. Please come outside and I’ll show you.”
Reluctantly, I got up from my desk, slipped my sneakers on, and walked outside with Cam.
It was a gorgeous summer day. After I walked outside, I was thankful Camryn decided to interrupt me. I needed a break. Writing this memoir had been a heartrending journey, far more difficult than I would’ve ever imagined. On that day I had struggled more than usual. But the blessings of God continue to amaze and encourage me.
“Just follow me, Mommy.”
Camryn’s mouth and teeth were completely blue from eating a candy push pop, and a sparkly turquoise clip held her wavy brown hair away from her face. She was growing her bangs out that summer, so barrettes and fancy clips were a must. And even though it was three o’clock, Cam still had her pajamas on: an oversized, bright green t-shirt that says Life in huge letters on the front, and comfy blue fleece sweatpants. It was just one of those lazy days of summer.
As she led me over to where Hunter’s tree is planted, I couldn’t help but feel sad. A bundle of freshly picked flowers lay on the ground in front of the perfectly shaped pine. Not long after Hunter went to heaven we were given a pine tree to plant in his honor. When we moved, the tree went with us. It stands a good five feet tall right now and seems to be thriving despite its three transplants. At the base of the tree there’s a cement plaque that reads:
Your memory is our keepsake, with which we’ll never part.
God has you in His keeping. We have you in our hearts.
Friends of ours who lost their infant son, Liam, to Krabbe disease gave us the memorial plaque after Hunter died. Their way of saying, “We know how you feel.” Unfortunately, the plaque didn’t fare as well as the tree did when we moved. It’s now cracked down the middle, broken in two—like my heart.
“Look, Mommy, aren’t they beautiful? I picked them in our yard,” Camryn said with delight. Although she was ten years old, Cam still didn’t understand that the flowers in our backyard are not meant to be picked. But for her brother, she would’ve picked them all.
“They’re so pretty, Camryn. Thank you.” I hugged her and we walked back over to the house.
What Camryn and Erin remember about Hunter, and what he meant and continues to mean to them, is reflected in a letter each one wrote to their beloved brother. Camryn was nine and Erin was thirteen when they journaled their tributes. Camryn completed hers first, and here’s what she wrote:
My Brother Hunter
By: Camryn Kelly
I love letting balloons go up to heaven. My cousin Ben asked my mommy if balloons can really go up to Hunter. And she said, “If God wants our balloons to reach all the way up to heaven, they will. He can do whatever He wants to.”
Before I let a balloon go, I put lipstick on and kiss it. Then I get a marker and write something special to Hunter on it. Usually I write, “I love you Hunter. I can’t wait to see you. We miss you. Love Camryn.” And then I let it go up, up, up, high in the sky. Sometimes I watch the balloon until it’s only a little speck. I hope God brings our balloons to heaven. Maybe when we get to heaven we’ll see all the balloons we sent to Hunter.
I miss him so much. I used to cuddle with Hunter all the time. My sister Erin and I got a new dog two years after Hunter went to heaven. Her name is Bella and she’s a Chihuahua. She’s the cutest little thing and I know that Hunter would’ve loved her because she likes to cuddle just like he did.
I miss Hunter’s warm, soft skin and his smile. I miss kissing his cute face every morning and touching his wavy hair. Even though Hunter couldn’t talk, we understood what he was saying. He would blink once for “yes.” I loved my big brother so much and I didn’t want to let him go. But I know that God had a plan for Hunter’s life and He has a plan for my life too. My mommy says I look like Hunter. I like when she says that.
I remember taking baths with Hunter. My mom, Erin, Hunter, and I would have lots of fun in the Jacuzzi. One time we put bubble bath in the water and put the jets on and the bathtub overflowed with bubbles. You couldn’t even see us, there were so many bubbles. Erin and I put bubbles on our heads and in our hands and blew them at Mommy and Hunter. It was hilarious.
My brother loved horses. His favorite horse was Bambi. Bambi is a chestnut brown horse, and she has a white spot on the tip of her nose and one between her eyes that looks like a star. She lives in Attica at my mommy’s aunt’s barn near Grammie’s house. Hunter got to ride her a few times. When Hunter got bigger, my mom had to hold him sideways across Bambi’s back. I was so afraid that he might fall off or that his oxygen might get disconnected. We were always very careful with Hunter. When Bambi had her baby Ohmeister, we went to visit her and she licked my mom’s shoes. It was so funny. My mom always forgot to bring carrots for the horses. I haven’t been to the barn to visit Bambi since Hunter went to heaven. I miss her. I wonder if Hunter misses her.
The most terrible moment in my life was when my mom, dad, and Grammie told me that Hunter went to heaven. I cried my eyes out. I didn’t want it to be true. But it was. We were all crying. I still cry sometimes.
My best friend Cara had to give her dog Maisy away the other day. I felt so bad for her. She’ll never see Maisy again, just like I’ll never see Hunter again. But I’ll see him in heaven. I wonder when that day will come. I get butterflies in my belly just thinking about it.
Hunter would always brighten up my day. I love my brother so much that sometimes I feel like my heart will explode. I wish he were still here with me, but I know that heaven is the best home for him and all of us. I wonder what he’s doing there right now. I wonder what his voice sounds like and if he’ll look the same. I also wonder if animals talk in heaven. That would be so cool.
I can’t wait to see Hunter again. I can’t wait to see Jesus. Waiting can be very hard. I sometimes wish I could go to heaven right now. But that’s God decision, not mine.
Hunter was the best brother and still is, today and forever and ever. He will always have a special place in my heart.
Erin Marie had a very hard time writing her letter. She is still grieving. And although she doesn’t cry or talk about her brother very often, I know she’s heartbroken. I see her pain when she gets frustrated and angry fo
r no reason. I hear the desperate cry of her heart in her silence. Here’s what Erin wrote:
Thoughts from my heart… by Erin Kelly
I had a difficult time deciding what to write for this book. There’s so much I want to say about my brother, but it’s hard to describe how I feel. I miss Hunter. But I believe I will see him again. Until that day, I know living without him will be terribly hard. Hopefully I will carry the memory of his incredible life with me for as long as I live. I want to remember everything about him. He was an incredible boy, and very handsome too. I love him so much.
To express what my heart longs to say, I decided to write Hunter a letter. And through my words to him, I hope you can catch a glimpse of how much he changed my life. I’ll never be the same. I miss him so much.
Dear Hunterboy,
No words can express how much I love you. There is no mountain high enough to keep me away from you. You mean more to me than anything in the entire world.
The best day of my life was when you came into my life, and the worst was when you left. I know I will see you again someday soon in eternity. But I would do anything to be with you for one more day… even if it was only for a second. I would do anything to touch your perfect skin or run my fingers through your curly brown hair just one last time. To watch a movie with you, play Rescue Heroes with you, and look into your handsome green eyes just one last time.
Life will never be the same without you. Home isn’t home without you. Life isn’t life without you. I’ll never be the same. Jesus is the only reason I’m still living. I miss you more than anything.
I miss watching Davey and Goliath with you. I miss playing games with you, even though you always beat me. I miss coming home from school and knowing that there was one very important boy waiting for a hug from his big sister. I miss staring into your eyes, hoping and praying that somehow, some way I could take your place.
