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

  … that you radiate God’s glory.

  … that I see Jesus in you.

  … to hear the bubbles from your oxygen tank.

  … when you have paint under your nails, because that’s a sign that you did a fun art project. You’re an artist. Mommy treasures all of your special creations.

  … when Grammie sings to you in the Jacuzzi—especially when she sings “Soldier Boy.” She’s crazy about you, and you know it.

  … when you lay across my lap and we just stare at each other.

  … that your birthday is on Valentine’s Day, your daddy’s birthday and my favorite holiday—thanks, God.

  … that people I don’t even know write me letters to tell me how special you are. That’s so cool.

  … when people come up to me and tell me that they named their baby boy Hunter because of you. Isn’t that great? People think you’re something else, little buddy.

  … that because of you, we formed the Hunter’s Hope Foundation and lots of children’s lives are being saved as a result of the amazing work God is doing there.

  … that life is better because of you.

  I love you, Hunter James Kelly.

  I promise I’ll write more, you cute little pumpkin boy.

  Hunter loved it when my mother and I read my journals to him. Most of what I wrote was for me, for the sole purpose of reminding me of every single reason I loved Hunter as much as I did. I wanted to make sure not one of his qualities, expressions, or attributes was ever forgotten—regardless of how small they seemed at the time.

  Initially, sharing my Hunter journals with Hunter never crossed my mind. My mother started reading them to him during the night, and he enjoyed them so much that she eventually made a video for him. The video was a collage of photos with soft background music and my mother doing the voice-over, reading my journal entries.

  Our homemade videos were very unique. Because Hunter spent a lot of time lying sideways during chest therapy (which he had to have every four hours around the clock), my mother created DVDs that he could easily watch from that position. Everything on the DVD was sideways—perfect for Hunter’s viewing pleasure.

  The simplest change made such a huge difference.

  December 17, 2004—Hunter, I can’t believe how fast time goes by. In two months you’ll be eight years old. How can that be? Despite the usual issues, you’ve been fairly healthy lately. Your eye-band [a special band my mother made to help Hunter close his eyes. He was unable to use the muscles around his eyes, so we had to figure out a way to help him close them] and gel have helped your eyes a lot. Grammie’s so creative, isn’t she? What will she think of next?

  Hunter, I know your burdens are way more than you can handle. You are incredibly brave and strong and you never give up, but I want you to know that the Lord knows and He’ll carry you through until you see Him face-to-face. Your life and breath are in His hands, and He knows when heaven needs you more than we do. Until that day, we’re here for you and we’ll do whatever it takes to provide for all of your needs. We’ll do whatever it takes to kiss and snuggle you for as long as we can. We’ll do whatever it takes through Hunter’s Hope to help all the little boys and girls suffering from disease. We’ll never give up, Hunter, never. Hang in there, little buddy. Don’t give up.

  Despite overwhelming odds and the devastation caused by Krabbe disease, Hunter was full of life. He gave himself away so unselfishly, and although life in our home revolved around his constant care, we were given immeasurably more than we gave. As odd as this may sound—and believe me, it’s radical—I forgot that Hunter was dying from Krabbe disease.

  I forgot.

  He was living, and I believed he would keep on living.

  The Last Seven Months, January–August 2005

  These are the last few journal entries before Hunter met Jesus. Just as I never wanted to say good-bye to my boy, I don’t want this to be my final set of journals—my last hopes, fears, prayers, and letters to my son. I don’t want it to end. Not now, not ever.

  Praise God it doesn’t have to.

  What I hold now are journals filled with memories that don’t even compare to the real thing. I’ll hold my boy again someday. This I know for sure. Until I do, I’ll keep these memories close, but I won’t cling to them. Rather, I’m going to cling to the One who created my boy and made every minute with him possible. I’m going to cling to the One who provided a way for our entire family and all who knew and loved Hunter to see him again.

  We’ll see him again. Of this I am certain! This is my hope. The kind of hope that has no end.

  February 14, 2005—Happy birthday, Hunter—you’re eight years old. Your life is nothing short of a miracle, a gift from the hand of a good and merciful God.

  Thank you for being so sweet and full of life. You make our home a place I long to be. Your eyes and face look especially bright today. I think you even got a little more handsome. How can that be? Today you are loved and cherished more than words can say and more than you will ever know.

  Hunter, I pray that you will continue to shine for Jesus more and more with each passing day. I hope you will be free from worldly troubles and that you will always fix your eyes on the prize. Run the race, Hunter! The Lord loves you more than I ever could. He has prepared a wonderful place in heaven for you, and until that day, I pray that you will feel and know how dearly loved you are. Thank you for being such an incredible young man.

  Hunter’s Day of Hope for Children is tonight. It should be a lot of fun, but I have to be honest with you, Hunter: sometimes I don’t want to share you with everyone else. I wish I could capture you and take you away so the two of us could be together… just you and me, without all the distractions. Wouldn’t that be cool? We could do all the fun things you love to do, except bugs and reptiles and stuff like that. Maybe someday we’ll do it, okay?

  Heavenly Father, thank You for revealing Yourself to us through Hunter. Thank You for helping us learn, grow, and change as a result of suffering. Thank You for giving us a greater, lasting hope through Your Son. Thank You for the life and breath You give to Hunter each day. Your power is evident and magnified through his little life. Help us to persevere, no matter what.

  February 17, 2005 (The Reptile Guy)—I can’t believe I allowed a baby alligator to sit on your lap. I know how much you like Steve Irwin, the Crocodile Hunter, but having one in our house is crazy, don’t you think? It’s a good thing you and Robert are so brave, because Mommy doesn’t like alligators. I still can’t believe all the creatures Mr. Jeff brought to the house today. I’m so happy you and Robert were able to enjoy everything, just the two of you (and the paparazzi, of course). I know you had a blast with all the animals.

  My favorite part of today was when Robert washed your hair in the Jacuzzi. I’m crying just thinking about it. He loves you so much. He really wanted to sleep over tonight, too. It broke my heart to tell him no. Maybe he can some other time, okay, buddy? What an unbelievable friendship you boys have.

  March 25, 2005—Hunterboy, thank you for praying at our prayer party the other day. I would love to hear what you said to Jesus. Did you tell Him that you want a horse? Grammie is trying to convince me to buy a horse for you and your sisters. She’s even talked to Aunt Chris about it. I think we’ll stick with riding Bambi and watching Young Black Stallion.

  Your new teacher, Ms. Bonnie, is wonderful, isn’t she? I thought Ms. Susan was great, but God continues to surprise us.

  The eggs you colored today are beautiful, young man. Easter is in a couple days and I just might have to hide some of your eggs, if that’s okay. I know you’ve been reading through the story of the resurrection. This is our hope, Hunter, the one we cling to with all that we are. Jesus is more than a Rescue Hero. He did it all so that you and I have hope beyond this life… hope beyond your suffering. There will be a day when you will finish this race, and when you do, Jesus will be there to carry you over the finish line. One day at a time, soldier.

 
April 7, 2005—What a great band practice the Hopesters had today [Hunter’s little band, made up of our family and members of Team Hunter]. You were jamming along right to the beat with your bells, Hunter. You have always loved music, so it’s fitting that you would be in a band. Justin [my cousin] loves practicing with you. I think if he could, he would teach you how to play the guitar. He would do anything for you.

  Hunter is 46 inches tall now and growing, and he weighs 52.5 pounds.

  May 7, 2005—Hunter, I don’t know if you know this or not, but Robert has been over seven times in the last month. Wow. I really like the new tie-dye shirt he got you. We’ll have to make sure you wear it the next time he comes over.

  Erin’s birthday party was so fun, wasn’t it? She turned double-digits, ten years old. Do you like her new pet hamster, Winslow? He kind of smells, and you know Mommy’s going to have to clean his cage because Erin will probably forget. Gross.

  Even though your sister is busy with school and her friends, she always makes time for you. She loves you so much. Erin has asked me a few times if she could take care of you and sleep with you through the night, but I told her no. I’m sorry that I can’t let her, Hunter. I know you understand.

  May 26, 2005—Thank you for planting flowers with me today. You’re more beautiful than all the flowers in the whole world. You lost two teeth in the last week—way to go!

  July 2, 2005—Hunter, you have the best, best friend in the world. Today was “new van day” and your buddy Robert insisted on trying out your wheelchair in the van before you got in. He wanted to make sure you would be able to tolerate your new ride. What an amazing friend.

  Once we had him strapped into your Quickie wheelchair and rolled into the back of the van, you should have heard him, Hunter. He made sure we knew exactly how every single bump felt. He was very still and so serious. We told him he could relax, but he said, “This is too important for Hunter. I need to make sure it’s just right for him.”

  That’s what friends do; they encourage you and support you in good times and bad. Robert is a true best friend. He would do anything for you. Maybe you should let him beat you in UNO the next time you play. He would like that, don’t you think?

  I love when he holds your hand and sings “I Could Sing of Your Love Forever” to you. The friendship and love you two boys have will endure forever.

  “A friend loves at all times” (Prov. 17:17).

  July 15, 2005 (Ellicottville, NY—Hunter’s Haven Lodge: Hunter’s Hope Family and Medical Symposium)—Daddy was telling you all about his Alaskan bear hunt today. He loves sharing his hunting adventures with you. He’s a great storyteller, isn’t he? How about that telephone he bought not too long ago—the one that lets out animal sounds every time it rings? He thinks it’s the greatest thing. Silly Daddy.

  All the Hunter’s Hope kids will be coming up to the lodge to visit. Your friends are great. They’re brave like you, Hunter. Very brave. What a blessing to be able to help all your buddies through Hunter’s Hope. It means a lot to the families.

  Hunter, you’ve been doing so well lately. Except for the few trips we had to make to the hospital for a tube change and other minor things, you’ve been really good. In fact, when I saw you actually doing your own leg exercises the other day, opening and closing your legs all by yourself like a beautiful butterfly, I thought God was giving me a glimpse of your healing. I’m serious, Hunter, that’s what I thought. The more you grow, the more of heaven I see every day. Nothing will ever compare to watching you love life like you do. You are a taste of heaven. You really are.

  I know how much you enjoy reading Mommy’s journals, so here’s a few more for you, brave one:

  I Love…

  … that you are so sensitive to other people’s feelings.

  … that you are ticklish like Mommy, especially your feet.

  … that you keep me on my toes.

  … that you never complain.

  … who God made you to be.

  … when people ask me how you are doing.

  … that you are a reminder of all that is good.

  … that you are a good listener.

  … when you wear sunglasses and a baseball hat.

  … when you take real deep breaths.

  … brushing your big boy teeth.

  … your name—Hunter.

  … praying for you.

  … kissing you.

  … watching you sleep.

  … running my fingers through your hair.

  … talking about you.

  … being your mother.

  … that God is in control of your life.

  … that someday you and I will be in heaven with Jesus forever.

  Chapter 13

  August 5, 2005

  On August 4, 2005, the limo had just arrived to pick us up for the Kenny Chesney–Gretchen Wilson concert. It was five o��clock and our friends were waiting in the kitchen while Jim and I finished getting ready. Kimmy was babysitting the girls, and Hunter was at my mom and dad’s house.

  I wasn’t in a concert mood. The kids and I had just spent the last five nights at my parents’ house while attending Kingdom Bound, a huge four-day Christian music festival near Attica. After spending the last few days ride-hopping and concert-going with a bunch of kids, I was exhausted. I just wanted to stay home. I was also scheduled to tape a local television show the following morning, and I needed to prepare for it, so the girls and I had come home. Meanwhile, Hunter stayed at my parents’ because it was my mom’s night to take care of him.

  While Jim finished getting ready upstairs, I was downstairs going over the bedtime routine with Kimmy. And then the phone rang.

  “It’s your mom,” Kimmy said as she handed me the phone.

  My mother and I talked to each other all the time, so I wasn’t surprised that she was calling. Unfortunately, that conversation was the beginning of the worst twenty-four hours of my entire life.

  “Hello.”

  “Jill, I don’t think Hunter’s acting like himself. I think something’s wrong.”

  “What do you mean?”

  “He’s just so quiet.”

  “How do his lungs sound? What’s his temperature?” I probed with the usual array of Hunter health questions.

  “His lungs sound okay and his fever is… Jill, I just think you should come here,” my mother said as she started to cry. I sensed fear and frustration in her voice. I knew in that moment something was seriously wrong.

  My mother was meticulous regarding Hunter’s care. And not just his physical needs, but everything that pertained to his overall health. I never worried when she took care of him. The nights she slept with him, I was able to sleep. Whenever she was in charge of the Kelly house, I could relax. “Okay, Mom, I’ll come right over.”

  After I hung up the phone, Kimmy assured, “The girls will be fine here with me, Jill. You better go.”

  I felt anxious and apprehensive. Besides being worried about Hunter, all the other couples were now waiting in the limo and I was about to tell Jim he would have to go solo—again. Although we occasionally made time for each other, he was used to being without me. My life revolved around Hunter’s care, and whether Jim liked it or not, so did his. Still, I knew he’d be very disappointed.

  When I walked upstairs to tell Jim I wasn’t going, he was fussing around the room. “Are you ready?” he asked.

  He didn’t look at me or he would’ve known something was wrong.

  “Jim, I can’t go,” I said. “My mom just called, and something’s wrong with Hunter. He’s not acting like himself, and she thinks I need to come over and make sure he’s okay.”

  “What’s wrong with him? Can’t your mother take care of him?” he asked with a puzzled look.

  “I don’t know what’s wrong. That’s why my mom wants me to come there.”

  Tears filled my eyes and anger filled my heart. Doesn’t he get it? I thought to myself. Nothing else matters when Hunter’s sick—nothing.


  “Everybody’s outside waiting to go,” Jim said, frustration pushing its way into his tone. “What am I supposed to do, Jill?”

  At this point I was so worked up that I lashed out at Jim and said some things I would later deeply regret: “You know what? Someday you’re going to regret not spending time with Hunter. All you care about is yourself. Who cares about the stupid concert? Who cares about anything else? Hunter is sick. I’m going to my mom’s.”

  I turned around, walked back downstairs, and kissed the girls good-bye.

  The long drive to my parents’ house gave me time to vent my frustrations. I was so mad at Jim. Why did everything and everybody else come before our family? There was so much I wanted to say to him, and yet I needed to keep my mouth shut for the sake of trying to trust God in the midst of our broken relationship.

  When I arrived at my parents’ house it was close to seven o’clock. My mom was just getting Hunter out of the swimming pool and Ellen, Hunter’s nurse, was helping her get Hunter situated in his stroller.

  I knelt down next to Hunter and ran my fingers through his wet, wavy hair. He was lying on his side, wrapped up in a beach towel. “Hi Hunterboy, what’s going on?” I asked. “Did you have a nice swim? I came back to Grammie’s to see you and to make sure you’re okay. You look great, Hunter.”

  As I continued to run my fingers through his hair, I looked up at Ellen. “How’s his temp after being in the pool?”

  “We haven’t checked it, but let’s do that, okay, Hunter?” Ellen grabbed the thermometer and slowly tucked it under his arm.

  Beep, beep, beep went the alarm. “Oh my, your temperature is perfect. It’s 98.6,” Ellen exclaimed as she tucked the thermometer back under the stroller.

  I said with excitement, “I don’t think your temp has ever been 98.6! That’s so cool, Hunter. And you look and smell so good, all fresh and clean. Let’s get you in the house for some chest PT, okay, buddy?”

  We strolled Hunter over to the deck door and into the house. Just then my dad hollered from the kitchen, “Dinner’s ready!”