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

  April 8, 1999—Hunter went to the playground today. Grammie insists on taking Hunter to places I would never even think to take him, like the playground. Honestly, if she could safely put him on a roller coaster, she would. My mother would sit right alongside him, laughing with her hands in the air. I’m big and pregnant and have no ambition to do anything that requires a lot of energy.

  This pregnancy has been the worst of all three by far. Thank God I have help. Reggie goes nonstop and takes such good care of everything, especially Hunter’s things. She takes the time to iron all his sheets and little t-shirts. Hunter loves when she reads him stories because she’s always so animated. He loves her back massages, too. I don’t know how I’m going to take care of a baby, Hunter, and Erin. Lord, as always, I need You. Some things never change—clinging to You is one of them.

  May 25, 1999—I don’t know how Hunter does it. He puts up with so much all the time. Today in the bathtub I had to help him excrete two stones the size of small Grape Nuts cereal. Are you kidding me? Jim saw them and just about fainted. What’s even crazier is the fact that Hunter didn’t even cry when they came out. How can that be? He’s so tough.

  God, please continue to strengthen and heal Hunter’s body. He needs rest and peace. Hunter is a constant reminder of our need for You.

  June 24, 1999—Happy birthday, Camryn Lynn Kelly: 8 pounds, 7 ounces, 21¼ inches long—5:09 a.m. Welcome to the team, little rookie.

  August 20, 1999—Hunter went to the dentist today to get his teeth cleaned. His teeth are so nice and straight and cute. Oddly, we love taking him, probably because he always shows off. (Of course, my mom took a bunch of pictures.) The dentist even commented on how amazed he was that Hunter appeared to understand exactly what he was saying. When he told Hunter to open his mouth a little wider, he did.

  It’s no surprise to us. We know that HB is fully cognitive. He understands exactly what’s going on, but his body doesn’t get the messages his brain is trying to communicate. He’s such a smart kid. I’m really thankful that people like our dentist get to see that Hunter really does know what’s going on.

  I’m so busy now with the baby that I’m always exhausted, and Hunter hasn’t been sleeping very much lately, so that’s been really hard. I know we’ll be okay, though. We have to press on and trust God in the midst of all this craziness. One day at a time, one hour at a time, one prayer at a time…

  September 1, 1999—Lord, please help Hunter. He’s been struggling with jumpy arms and seizures for two days straight and nothing seems to help. It kills me to watch him go through all this. I want to scream. But I have to be strong and calm for Hunter’s sake. I have to keep it together for him.

  Lord, hold me together. Please give me the strength I need to take care of all three of my children. I can’t do this without Your help….

  December 3, 1999 (My brother Jack and his wife, Kim’s, wedding)—Hunter looked incredibly handsome today. I’m so thankful that Jack asked him to be a groomsman. He made the wedding that much more wonderful.

  I was amazed that he didn’t need any suctioning during his part of the ceremony. He’s so smart and knows just when to keep it all in. His cute little tuxedo fit just right, and he wore it with great pride for his uncle. Erin was a beautiful flower girl, too. What a great day.

  Hunter will be three years old in a few months—what a miracle. He continues to astound all of us with his courage and will to persevere. His life is a living testimony to the grace and mercy of God. Thank You, Jesus.

  December 23, 1999—The Christmas tree is up and looks beautiful. Erin and Hunter helped decorate this year. Jim threw some tinsel on the tree as he walked by (just kidding). Tinsel is his favorite decoration but I can’t stand it. At least he doesn’t try stringing a bunch of footballs around the tree.

  Elizabeth got HB up in his stander for 30 minutes today and he loved it. I loved the look on his face as he gazed at the twinkle lights and colorful bulbs on the tree. The simple things mean so much to Hunter. Standing up for 30 minutes is a big deal. Breathing without apnea and secretions is a big deal. Life itself is the greatest gift to him. He has taught us so much. I can’t believe how shallow my life and existence were before Hunter. He makes life worth living. As difficult and heartbreaking as it is to see my son suffer, watching him enjoy every ounce of life is truly indescribable. Wow….

  As Hunter continued to grow, so did our family with the addition of Camryn. There was never a dull moment for the Kelly family, and although Hunter needed constant care, the girls were just as demanding of my attention. I often felt torn between spending time with the girls and taking care of Hunter. However, God started to intervene in miraculous ways.

  Year Four, 2000–2001

  January 13, 2000 (Florida)—Grammie held Hunter close to the ocean waves, and when they rushed in and touched his cute little toes, he pulled his legs back. It was amazing. Just to see him move his legs like that all by himself was such a treat.

  Erin had fun building sandcastles and making Hunter’s feet disappear under mounds of sand. He seems more at peace by the ocean than anywhere else. I think he enjoys the sound of the waves and the warmth of the sun. Although he continues to have seizures, they don’t last too long and then he seems fine. These fleeting moments of contentment when Hunter is doing well are priceless.

  February 15, 2000 (Florida)—Hunter had a new feeding tube put in today. He went from a GT [gastrojejunal] to a JG [jejunostomy] tube. This tube will allow formula to go directly into his intestines rather than his stomach.

  We changed his tube because he was getting pneumonia often and the doctors in Florida think he’ll get it much less with the JG. I hope so. His poor little lungs have taken such a beating from all the aspirating. To think that we would know and understand all this feeding tube stuff is crazy. And yet I’m so thankful for all of it—for the suction machine, the feeding pump, and the oxygen—all of it. Everything we have to help Hunter is a gift—everything. He’s a gift!

  March 20, 2000 (Florida)—What a horrible day. Hunter’s JG tube slipped out, so we had to rush him to the hospital. The doctor, who we don’t even know, kept trying to thread the tube back in. I held Hunter’s hand the entire time and we ended up being there for four hours. I want to scoop him up and run away. Watching Hunter suffer is excruciating when I can’t do anything about it. Please help him, God. PLEASE!

  April 28, 2000 (Attica, NY)—My mother is hysterical. She took Hunter to the Attica Library today and he got his own library card and checked out ten books. Then they strolled down Main Street and stopped at Wayne’s World for some ice cream and then Busy Mart. I’m sure Grammie wanted to give Hunter a taste of her ice cream… my mom thinks Hunter should experience everything he physically can. I get that. I want him to be able to experience and taste certain foods too, but the risk is just too high because he can’t swallow. Which means that if we didn’t suction him in time, he might choke. It’s just not worth the risk.

  Still, I struggle with what to do. I shelter him as much as possible, but maybe he needs to be more exposed to the world around him. I have to let go, but it’s hard… so hard.

  Hunter went for a ride through the woods in the back of Grandpa’s tractor today, too. My mom said she wants to take Hunter to a shoe store tomorrow, to have him fitted for a new pair of sneakers. And then she and my aunt Dodie plan to take the kids to a farm so they can pet some animals. My mom is amazing. She loves taking Hunter on adventures she knows I would probably be reluctant to take him on.

  June 3, 2000—We went to visit Bambi [Hunter’s favorite horse] today. Hunter loves her so much. Of course I forgot to bring carrots… again.

  Hunter was also up in his stander today playing the piano. When he gets his arms moving you can tell he’s really trying to play the keys. Believe it or not, the music he makes actually sounds good—really good. I’m so proud of him. He tries so hard all the time and knows exactly what he’s doing; he’s a very smart kid.

  He’s sti
ll into Stuart Little, Little Bear, Davey and Goliath, and Franklin the Turtle. I love when all three of the kids fall asleep next to each other while watching a movie together. They’re beautiful. Erin and Camryn love their brother and always see past his disease. I’m so blessed.

  August 1, 2000—Crazy day; so much going on. Hunter had to get a CAT scan (computerized axial tomography) and an EEG (electroencephalogram) at Children’s Hospital. Hunter’s temperature has been all over the place lately—anywhere from 104.4 to 99.4—and he’s been having more apnea and seizures. Please help him to breathe, Lord.

  It’s been so beautiful outside lately that we’ve tried to take Hunter out for a stroll as much as possible. When we’re walking through the neighborhood, I find myself talking to him about the color of the sky, the grass, birds, and squirrels—things I never really paid much attention to in the past. He makes me so much more aware of everything. Lord, thank You for opening up my eyes through Hunter’s. God, please heal my boy.

  November 12, 2000—Dear Hunter… It’s amazing how fast time goes by. We have been so busy that I haven’t even had a chance until now to reflect on all the fun and exciting things you’ve been up to lately. Being a three-year-old boy is pretty cool, especially when you’re a preschooler. Along with your awesome physical and occupational therapies, you are now a schoolboy.

  Ms. Marion and Ms. Kristin have joined our team and they are so much fun. They have introduced you to a lot of neat things to help you learn more about yourself and the world around you. You’ve been experimenting a lot lately with different smells and surface textures. One of your favorite sessions was playing in the banana shaving foam. I had fun, too, especially watching you. You’ve been able to experience a lot of new and different things like pumpkin carving, leaf collecting, and horseback riding on Bambi.

  You are getting so tall, Hunter. I’m amazed at how much you’ve grown. That little baby with the chunky-cheek face has grown into such a handsome boy. Erin and Camryn have so much fun with you. Camryn just wants to kiss and hug you all the time. We think she’s going to be your next nurse because she’s always trying to suction you and give you chest therapy. Erin loves to read to you and play Noah’s ark. You are always so happy and excited whenever your two sisters are around. I also love watching my two favorite boys hang out together. To see your face whenever Daddy holds you is so special. He loves you so much.

  Some days, Hunter, you are on the go so much that I just can’t wait for bedtime. Although I love our Jacuzzi and playtime, I look forward to bedtime. There is nothing sweeter than getting all snuggly with you and holding your hand as we both drift off to sleep.

  I love you so much, Hunter. What an immeasurable treasure from God you are. Each and every day that goes by with you by my side is a shower of blessings sent from heaven. Thank you for bringing so much love and joy into my life. I’m so proud to be your mom. Through all your suffering and struggles you continue to show such strength and courage. I will continue to pray that someday we will be holding hands and giggling while we run through a beautiful meadow chasing butterflies. If not here, then for eternity. I can’t wait. I love you, little buddy.

  Despite the birth of our daughter Camryn, and our joy at having another child, our marriage was fading into nothingness behind the scenes. Hunter, however, continued to grow and fearlessly fight the war being waged against him. Though outwardly it appeared that Hunter was wasting away, his inward spirit continued to shine ever so brightly as he battled seizures and all sorts of serious physical complications. His unbridled will to live filled our home and hearts with a joy beyond description.

  And in the midst of everything I passionately pursued the heart of God. Hunter’s struggles drove me to my knees—and God, in His mercy, kept me there. The more Krabbe disease tried to steal, the more life God poured into our family. Miracles were happening almost daily, none more significant than the realization that we all needed Jesus as our quarterback.

  Chapter 10

  Hunter at Five and Six

  Year Five, 2001–2002

  My journals start to read more like prayers now. My thoughts are so intertwined with prayer that it’s hard to determine the difference… and I guess that’s okay.

  January 11, 2001—Days go by so fast, I can barely keep up with the daily demands, much less journal. Hunter has been so busy doing all sorts of fun activities with Team Hunter. Since he can’t move his arms to play, Kristin taught HB how to use his breathing instead. At their latest session, she brought some colorful feathers and placed them close enough to Hunter that he could move them ever so slightly by breathing. Amazing. I could tell by the look on Hunter’s face that he understood that he was the one moving the feathers. Those fleeting moments of independence mean so much to him. They mean the world to me too.

  Hunter made a delicious chocolate chip cake with Elizabeth and Marion the other day. He got very messy but I could tell he was having a blast. I guess we’re into baking lately because Grammie had Hunter frosting cookies, too. He’s not the only one that gets all messy—it’s always a team effort.

  While Hunter gets a lot of exercise throughout the day, I think he enjoys the movement involved with baking or creating artwork. He doesn’t mind hand-over-hand help. In fact, he welcomes the creative activities so much that I don’t even think it bothers him that he’s not the one moving. As long as his limbs are active, his body can relax some and he can play.

  Today, my cousin Justin played the guitar for all of us. He’s musically gifted and loves to share his talent and time with HB.

  We’re concerned about Hunter’s hips, so we’ve scheduled an x-ray to get a better look at them. When we exercise his legs lately, you can feel his body resist. It’s much easier to move his legs in the water, but he can’t be in the bath all the time. Hopefully it’s nothing serious. He needs his exercise.

  February 15, 2001—We spent a lot of time opening Hunter’s birthday presents today; actually, Camryn opened most of the gifts for her brother. That’s what little sisters do.

  Hunter was fitted for “the Vest” today. [The Vest Airway Clearance System is a medical device that helped Hunter to manage and mobilize secretions in his airway. Most children with cystic fibrosis use the vest.] I was nervous and insisted on trying it out first. Although I didn’t really like how it felt on me, Hunter seemed to enjoy it. Besides, it will help his lungs and make chest therapy way more effective.

  We have so much to be thankful for. My pumpkin boy is four years old! How can that be? Lord, You’re so good to us, so good.

  March 20, 2001—Okay, I don’t know what it is with boys and cars, but they obviously go together. Hunter was up in his stander today and could have spent the entire day pushing his little cars down the makeshift ramp we made. He was fascinated with his ability to make the cars move all on his own.

  Such simple little things bring him joy. A life so simple and yet so intense and complicated. Simplicity motivates him to live; yet complexity sustains his living. This concept is ironic. Lord, he needs what only You can give him: comfort in the midst of suffering, peace in the midst of chaos, and an undeniable hope that cultivates extraordinary courage. Please relax Hunter—his muscles are so tight and his little body is rigid… he needs to loosen up so he can play.

  April 12, 2001 (Orlando, Florida—Disney Trip)—Thank You for getting us through our Disney trip. What a disappointment… except for the private dinner with Mickey Mouse. Big deal.

  Sorry, it’s just that we had high expectations for this trip and Hunter had such a difficult time. Thank You for the struggles and heartaches that keep us focused on our constant need for You. Help me to remember that You are in control, especially when things don’t work out the way we had planned.

  June 5, 2001—Hunter’s been struggling a lot lately. He’s been awake all night wrestling with secretions because of reflux, apnea, and nasty seizures. There’s also a lot of blood in his stomach, especially during and after chest therapy.

  Please
give me strength to keep going. When will it end? Every morning upon awakening, I am confronted by a new set of circumstances to deal with. My baby is growing worse each day, just like the doctors said. Friends, family, and even perfect strangers all storm the throne of God with tear-filled prayers for him to be healed; yet he continues to worsen. When will he be released from this?

  Sometimes I wish You would take Hunter. I hate when I feel that way! Please help me to be a better mother. I feel as though I live in a combat zone and I’m constantly battling this invading army that is trying to take down my family. Nightmares of being ambushed by hostile forces plague me. I sleep, but get no rest. This is my life.

  September 9, 2001—The only birthday present I want is healing for Hunter. Is that too much to ask, Lord? Who am I to question what is beyond my comprehension? I can’t help it; this is so hard. When I don’t understand, please help me to trust that You are in control.

  I think if my mother had it her way, Hunter would move in with her. They’re so cute together. Rescue Heroes, Playdoh, Lite Brite, and magnets are a big hit lately… Oh, and baking continues to be a common adventure around here. I suppose it wouldn’t hurt if I learned how to cook… Nope, don’t have time… ha, ha.

  October 31, 2001 (Halloween)—Hunter dressed up as Franklin the Turtle. I can’t believe I found just the right pieces to make his costume. He’s adorable.

  November 17, 2001 (Ralph Wilson Stadium, Wall of Fame)—I don’t know if I can describe the thrilling moments our family experienced today at the Buffalo Bills Wall of Fame ceremony. It was so exciting! Just thinking about it makes me cry.