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

by Jill Kelly

  They were learning how to be compassionate, caring, and merciful in the school of heartbreak. Even at a young age, they already knew more about life and death than most of us learn in a lifetime.

  Chapter 8

  Hunter at One and Two

  I journaled as much as possible throughout Hunter’s life, writing mostly about special things only a mommy would appreciate or milestones only I would consider huge. Things like a good or bad night’s sleep, losing teeth, good bowel movements, holding hands. I also chronicled the continued brokenness of a mother’s heart as my love for Hunter grew ever deeper. I prayed a lot in my journals as well. So in the midst of most of my entries describing a typical or not-so-typical day for my son, I would break out in prayer and praise. Praise for all that was and all I hoped would be.

  My journals are full of intimate memories. Its pages are stained with tears of joy and sorrow—and my morning coffee. They are torn and wrinkled with fear and failure, hope and heaven. Exclamation marks, circles, hearts, underlines, and scribbles are all part of this well-worn evidence of a mother’s plight to save her son and, ultimately, let him go.

  Answered and unanswered prayers are recorded in my journals, too, as well as the laughter, the sobbing, the screams of anguish, and the silence. The silence speaks the loudest. Sharing my journals is like giving away remnants of my heart, a quilted patchwork of vibrant hopes and dreams held together by a love as singular as the silence that could not inhibit it. Yet words fall short and always will. The inexpressible love, hope, joy, and sorrow I have as a result of being Hunter’s mommy permeate every strand of who I am.

  Because journaling is so personal, journals can often give the reader a perspective on the events being chronicled that other forms of writing cannot. So in this chapter, and the four that follow, I’ve chosen to give you a glimpse of Hunter through a chronological gathering of my journal entries. Hopefully these will enable you to see his life through a new lens and appreciate how truly extraordinary his life was. I’ve never been this transparent or risked sharing my heart and my Hunter like this, until now.

  Those of us who knew Hunter will tell you that he changed us in profound ways. The grass somehow appeared greener, and the array of beauty that colors our world and the intricate details of creation became more vibrant. Simple things we were usually too busy to appreciate filled us with gratitude because, incredibly, God used the simplicity of the common to show us how uncommon simple things really are. Hunter loved life… all of it. His suffering didn’t take away from his ability to enjoy life; it only made him enjoy what he could that much more.

  Year One, 1997–1998

  July 14, 1997—Hunter turned five months old today and weighs 14 pounds, 6 ounces. We celebrate every day with him because we don’t know how long he’ll be with us. Every day we try to encourage him to smile by tickling his cute, puffy toes and smooching his neck. We act goofy and make silly faces for him, but he’s still very irritable. Poor little guy. I guess it’s just too hard for him to smile. I think he’s beautiful, though, even when he cries.

  What’s making my boy so miserable? Dr. Duffner doesn’t know what part of Krabbe causes irritability. I just hope he’s not in pain. If Hunter’s crying because he’s in pain… I can’t even go there. Lately he’s been twitching a lot too. I wonder why.

  We spend a lot of time trying to keep Hunter busy with toys, music, and massages throughout the day. He calms down some whenever we kiss his feet and rub his legs. We still try to give him a bottle even though he has a feeding tube now. I’m hoping he’ll be able to taste and swallow at least for a little longer. Hunter loves his moon-and-stars pacifier and knows when we try to give him a different one—little stinker. He won’t move his mouth at all if it’s any other pacifier. I’m so thankful he hasn’t lost his ability to suck yet.

  At least one doctor calls us every day to make sure everything is going okay. We never know when we’ll have to take Hunter to the hospital because the effects of this disease sneak up on you. As time goes by, more of Hunter’s normal bodily functions will shut down, necessitating his need for continuous medical intervention. In the meantime, even though I dread going there, I’m so thankful that we can take Hunter to Children’s Hospital. I wish we knew more about this horrible disease.

  August 14, 1997—Hunter’s six-month birthday is today. He weighs 14 pounds, 13 ounces. He’s less irritable now, though he hasn’t smiled yet. Maybe the medication they put him on to help with his irritability and seizures is what keeps him so out of it now. We need to find out. And ever since his operation to have his feeding tube in, he hasn’t opened his eyes. People keep asking me if he’s asleep. I know he’s awake, but how do I explain to them what I don’t understand? Why are Hunter’s eyes closed? I don’t know. I have no idea what’s going on inside his precious, diseased body. I’d do anything to make Krabbe disappear. Hunter’s green eyes are so incredible. I wish he would open them. What if he can’t? What if he never opens his eyes again?

  We had an appointment with Dr. Duffner today at Children’s Hospital to discuss the option of a cord blood transplant for Hunter. She said there’s talk in the medical community that a transplant might actually stop the progression of Krabbe disease. It’s experimental at this point, but she’s going to investigate everything and let us know what she finds out. It’s the only option out there, so we must consider it. We’ll see. We also discussed going “public” with Hunter’s situation to see if there might be more help out there for him. This is so horrible. I wish I could take his place….

  September 3, 1997—I’m sitting on an airplane returning from Duke University after meeting with Dr. Joanne Kurtzberg regarding a bone marrow/cord blood transplant for Hunter. This has been a very difficult day. I saw so many sick children at Duke, and yet their parents were so pleasant and optimistic. They have so much to deal with, yet they walk around with smiles. It baffled me to see that. I wonder how they do it? I wonder if I will be able to smile soon.

  Dr. Kurtzberg doesn’t think Hunter’s body can withstand the chemotherapy and everything involved in having a cord blood transplant because of all the damage Krabbe has already done to his little body. Even if a transplant could stop the relentless destruction of Krabbe, she estimates that it could take up to a year. Meanwhile, the disease would continue to fully progress with irreversible results. Hunter would still need a feeding tube. He still wouldn’t be able to swallow or smile or move his body like a healthy baby. He wouldn’t develop or achieve the milestones he’s supposed to as a six-month-old. Even the simplest things like reaching for toys, Hunter would never be able to do because he can’t hold his little head up or grasp things with his hands. He’ll never utter his first word. What if he wants to say “Mama” or “Dada”? He can’t. A transplant won’t reverse any of that. And it won’t save Hunter. So, he won’t be getting one.

  I’m sad and fearful for Hunter. I just want to hug and kiss him forever. I’m scared to watch him die and I don’t know if I can handle it.

  September 28, 1997—Well, we’re in NYC right now. I’m sitting here in our hotel room, a nervous wreck because tomorrow Jim and I will appear on The Today Show to talk about Hunter and Hunter’s Hope, the foundation we formed to help children like Hunter. This is way beyond my comfort zone… but we have to do whatever it takes for Hunter. There’s no limit—we’ll always do whatever it takes to help our son. He needs us. I need him….

  January 28, 1998 (Children’s Hospital, Buffalo, NY)—We’re in the intensive care unit because Hunter has pneumonia. He’s hooked up to a ventilator and all sorts of machines and IV medications. I can’t even hold him because he’s attached to all these tubes.

  We’ve been in here for ten days already. Jim, my mother, and I take turns staying here day and night, and when we’re not here, we have to be at home with Erin Marie. One of us is always by Hunter’s side—always.

  Some people from the hospital asked if we wanted to sign DNR papers in case something happens to Hunte
r. I don’t care what any doctor says or what Krabbe disease will try to do to my son—he needs me and I’m going to fight for him as long as he’s living and breathing.

  February 14, 1998—It might seem like a typical day but it’s not—Hunter’s one today. Every day he’s here is a celebration of life. He’s such a beautiful boy. I could stare at his face all day long.

  Erin loves snuggling with her brother. She has no idea that her brother might not live very long. I’m afraid for her… I’m afraid for all of us. This is all so scary and there’s so much we don’t know and understand.

  People are rallying to support Hunter’s Hope and our family. It’s comforting that people we don’t even know, complete strangers, care about helping Hunter and children like him. We need all the support we can get.

  Hunter never smiled, and yet he did. For some reason, during the first year of his life we wanted so badly for him to smile. I guess because ordinarily a smile is considered an outward expression of happiness and joy. We had to learn that inward joy could be expressed in other, more profound ways. Just the fact that Hunter was breathing, that he was alive and fighting in his own way to be a part of life, was amazing.

  We all learned a lot that first year. I became acutely aware of the fragility and sanctity of life; that life matters, no matter the breadth or quality of it. Life itself is a gift. Every single breath is a treasure.

  Hunter treasured life. And his desire to live changed us.

  Year Two, 1998–1999

  March 2, 1998—Hunter sat in his Kid Kart wheelchair for the first time today. Kathy and Elizabeth positioned him perfectly and he looked like such a big boy in his new ride. Of course, we made a big deal out of it—we make a big deal out of everything. Erin couldn’t wait to push him up and down the hallway. I’m sure she’ll be asking to push him around every time he’s up.

  Hunter’s equipment usually intimidates me at first, but realizing how much he benefits from it has made me more open and accepting of everything he might need. It’s a challenge, but I’m learning.

  May 7, 1998—Start feeding, stop feeding, physical therapy, Albuterol, chest therapy, exercise, medication; start feeding, stop feeding, occupational therapy, Tylenol, massage, and Jacuzzi—it’s always something. Hunter’s routine dictates everything all the time. I just want him to be free. Free from pain and medicine. Free from everything.

  I wish I could make everything better, but I can’t. I feel so helpless and sometimes hopeless. I’m afraid to leave Hunter, so it’s hard for me to go anywhere. When I leave the house, even if only for an hour, I worry about him the entire time I’m gone. This is horrible.

  June 17, 1998—It seemed like a miracle happened today with Hunter. He was sitting on Grammie’s lap and his legs were dangling freely, and he started to lift his legs up and down all by himself. It was amazing. He pulled his right leg up first, and then his left leg in a circular motion like riding a bicycle. Hunter always tries so hard and he’s such a fighter.

  August 1, 1998—Hunter’s Hope 5K Race was today. We’re trying to organize as many events as possible to continue to get the word out about Krabbe disease and other leukodystrophies.

  I don’t know where we’d be if Jim hadn’t played for the Buffalo Bills. We need his fans to rally behind our efforts. What a miracle it would be if we found a cure for Krabbe before that dreadful disease steals Hunter’s precious life. Watching him struggle every day will surely put me in the grave. Without him that’s where I’d want to be anyway.

  We’ve been trying all sorts of alternative supplements and treatments for Hunter. The list is long: Noni juice, Mannatech, herbs and essential oils, magnetic mats—all sorts of stuff I’ve never heard of before. Hey, if it works, I’m all for it. But what if none of these things help Hunter? What will we do?

  We’re desperate. My mom is always searching for ways to help him. I don’t know what I’d do without her.

  September 27, 1998—Hunter was really sick this morning and slept almost the entire day except for when he was in the Jacuzzi. He was showing off in the water. It’s so exciting to watch him try to do little things like moving his head ever so slightly to look up at me.

  Every move Hunter makes is so amazing to me that I just want to bawl every time. Moments like these tell me he wants to live; he wants to move. I can see the desperation in his eyes, and it kills me. We can’t help but celebrate every one of his achievements; everything he does. We rejoice in the fact that he’s alive. He senses our excitement and we know that it motivates him to forge ahead and keep trying. It’s amazing what a little encouragement can do.

  We think Hunter’s having a hard time digesting food and we’re very concerned. Hunter’s physical therapist always has great ideas to help him. The other day she molded special shoes that form to Hunter’s feet for him to use while in the stander. They’re so cute. Her name is Elizabeth, and she’s great. To think that I was so apprehensive about her taking care of Hunter…. You never know what change will do.

  Erin Marie likes preschool but she misses her brother when she’s gone. They’re so cute together. It’s really late… gotta go.

  October 5, 1998—I wish I could make this all go away—Hunter shouldn’t have to go through all this. He’s on oxygen pretty much all the time now. This is so hard. What a brave little pumpkin he is. He struggles from morning to night just to live. Even though I can’t even stand the thought of being without him, I want him to be in heaven where he’ll be happy and suffer no more. Every time he gets sick, I wonder if he’ll get better or if he’ll continue to deteriorate.

  I love the way Hunter smells. When I kissed him good-night tonight, he smelled so fresh and clean. Grammie put Erin’s shirt on Hunter for bed… we were all laughing… I think Hunter was laughing too. Imagine that—laughing without making a sound. I don’t understand it all, but I know it’s true. I love him. I love him. I love him.

  November 24, 1998—Hunter’s staying over at Grandpa and Grandma’s house tonight. He loves my parents, so I know he’ll have fun.

  He’s doing a little better these days; no pneumonia right now—and that’s always a good thing. But unfortunately he’s been having really bad seizures. Dr. Duffner is trying to figure it all out. She might want Hunter to go on a medication that can only be purchased in Canada. We’ll go anywhere for Hunter. If he needs it, we’ll go get it because that’s just the way it is.

  Tonight is the final candle ribbon-tying in Attica for Hunter’s Hope. The volunteers will be tying hunter green ribbons around thousands of baby-powder-scented taper candles. Knowing that people care and want to help us in any way they can is so encouraging. I can’t wait to see the sea of candles light up the sky at Hunter’s Day of Hope for Children. What a beautiful way to celebrate the incredible gift God has given us—our kids. That’s one thing Jim and I share every time we have the opportunity to talk about our story. We want people to appreciate the gift of life because you never know what tomorrow holds. It’s amazing what this disease has done to our family.

  My mom’s taking Hunter to Wayne’s World for the candle-tying so everyone can meet him. She wants people to understand why we’re fighting for the kids. They need to know.

  December 23, 1998—Erin and Hunter had doctors’ appointments today. They found blood and small crystals in Hunter’s urine and think he might have kidney stones. You’ve got to be kidding me. As if he doesn’t already have enough to deal with, now this. God, if You’re listening, please help Hunter… he needs You. We all need You.

  What a whirlwind year two was.

  Hope was renewed when we started Hunter’s Hope and our little buddy continued to battle so courageously. Because of Hunter’s passion for life, we stopped treating him as if he was dying, and as a result we all started living… really living. Regardless of his daily struggles, Hunter’s inner joy continued to radiate and penetrate the hearts of all who met him. It seemed as though even though the disease progressed, our hopes and Hunter’s zest for life somehow ove
rcame it all.

  Chapter 9

  Hunter at Three and Four

  Year Three, 1999–2000

  January 22, 1999 (Florida)—Thank God for water because Hunter loves it. He loves the pool, the ocean, and his Jacuzzi bath. Every day, at least once if not more, he’s in the water. We’ve tried to take Hunter for a walk on the beach at least once a day, depending on how he’s feeling. The warmer weather seems to do wonders for his overall health, especially his breathing. He’s still on .50 liters of oxygen. What would we do without his oxygen?

  Erin slept through the night all by herself last night. I’m so proud of her. She always wants to be with Hunter, but he’s up most of the night so it’s best for her to sleep in her own room. Is Erin getting what she needs? I hope so, because I’m doing my best. I wish I could be in two places at one time.

  February 14, 1999—Happy birthday, Hunter and Jim… but not such a happy birthday—Hunter’s in the hospital. It’s 4:30 a.m. in the ICU and we need help. We need a miracle. Every time we come here I’m fearful I’ll have to leave without Hunter in my arms.

  God, please do something. Where are You? Am I not praying right? Please bring Hunter home. It’s his birthday today and here we are in the hospital. Why? I don’t understand Your ways but I’m trying to trust You in everything. But sometimes it’s so hard, like right now. He’s struggling. Lord, please intervene. Please!