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

  Our entire family, decked out in number 12 jerseys, headed over to the stadium in typical Kelly game-day fashion: by motor home. Much preparation was needed in order to get Hunter and the girls ready to walk out onto the football field. The deafening roar of 80,000 wild Bills fans was exhilarating. I was so excited for Hunter I could hardly contain myself.

  What an honor for Jim’s number to be retired and his name to go up on the stadium wall. What an even greater blessing to have Hunter there to experience it with his daddy. Unbelievable! God, You are so good.

  December 10, 2001—Hunter weighs 28 pounds and he’s getting so tall.

  Christmas is approaching, so there’s been a lot of holiday activity going on around the house. Tammy [Hunter’s nurse] says that whenever she and Hunter play a board game together, he always wins. She doesn’t let him win, he just does. He’s so cool. We made a gingerbread house the other day, played with snow, and painted some really cool tree ornaments.

  Hunter loves any activity where he can get all messy—typical boy. Camryn hounds Hunter continuously so she can join in on whatever he’s doing. She is the sweetest little sister. They love each other so much. Whenever Erin and Camryn snuggle or play with Hunter, there is a look of contentment on his face that is unmistakable. I can only imagine what he’s thinking or what he might want to say to them. It’s so hard to describe, but I can see love all over my boy. He’s happy. Despite everything he must endure, he’s happy to be here; to be alive; to be near his sisters. In return, their brother has taught the girls the meaning of unconditional love by letting them experience it long before they were old enough to understand its literal significance.

  Hunter has a fresh haircut for Christmas. He’s gorgeous. Lord, I hope this doesn’t sound weird but I feel like I see You in Hunter’s eyes, looking into me.

  As time went by and Hunter continued to grow and battle Krabbe disease, we became even more committed to providing every opportunity available for him to live the life God gave him. In my quest to draw near to the heart of the Father, I found myself able to surrender to Him in increasing measure. This allowed me to enjoy Hunter and life even more.

  Despite the crazy, roller-coaster life we were living and the disease trying to destroy my son, there was more laughter, fun, and joy in our home than ever before. Somehow our home was filled with life—and even my dying marriage couldn’t prevent it. Maybe because I was more focused on Hunter and his life than on anything that concerned Jim and our marriage…. It was as if the love enveloping our family, in some indescribable way, allowed us to experience a peace and joy beyond our circumstances.

  Don’t get me wrong—tears were shed and the fear of losing Hunter continued to haunt me, but the abundant life that poured out of my desperately sick son transformed our home, and it was good… really good.

  Year Six, 2002–2003

  February 7, 2002 (Children’s Hospital of Buffalo)—Lord, You knew every detail about this day before it came to be. As I sit here in the ICU and look at Hunter hooked up to all these machines, it’s undeniable—he’s beautiful. Thank You for the striking beauty and relentless strength I see in my son right now. His determination and desperation to live are honorable for such a little boy. Lord, how blessed I am that You gave him to me, to our family. Please keep him from pain. I’m terrified of losing him, and You know it. I don’t want to let him go. Do I have to? Is today the day? I believe that Your timing is perfect. Help me with my unbelief.

  When I’m fearful, please help me to persevere by faith. When my faith weakens, please God, hold me up for him. He cannot see me curled up in a ball on the floor, crying (like my body and mind are screaming at me to do). My heart is urging me with a still, small voice to stand up, look into Hunter’s eyes, and tell him it’s okay. It’s all going to be okay no matter what happens today. I know this is You, Lord; You who dwell in my heart and spirit, consoling me, inspiring me, and giving me strength. Nevertheless, the constant battle between flesh and spirit is intense and demanding.

  Please fill our hearts and minds with a peace that surpasses all understanding. Thank You for Hunter, his incredible life, and all that You have taught us through him. When I wrestle with why You allow Hunter to struggle so much, please remind me that You will never abandon him. He is always on Your mind, always.

  Hasn’t he suffered enough? Forgive me, Father, but it rips my heart to shreds when I see him lying here so weak and fragile, struggling to breathe. Rescue him, please, Lord… thank You.

  April 19, 2002—Like father, like son. HB was so engrossed in the football and hunting videos he watched today with his daddy. At first I was very apprehensive about letting him watch hunting, but Jim insisted. Go figure.

  Hunter loves watching his daddy play football. Even though the videos are of past Buffalo Bills games, Jim still gets riled up and Hunter loves all the hooting and hollering. I try not to interrupt the boys whenever they hang out because Jim doesn’t stay put for very long. His constant coming and going drives me nuts. I need more patience—but as Jim would say, “But I’m not a doctor, so why do I need more patients?” Very funny. Too bad I’m not laughing.

  We live under the same roof but we are worlds apart. What a shame. I don’t have the time or energy to focus on anything other than the kids, especially Hunter.

  May 4, 2002 (Erin’s Seventh Birthday Party)—As usual we went overboard for Erin’s birthday. My mom bravely strolled Hunter outside, where kids were running around everywhere. Thankfully, Hunter and all his medical paraphernalia don’t intimidate Erin’s friends. They’re intrigued and curious but not fearful. My cousin Jessica face-painted a horse on Hunter’s cheek. I try not to think about it too much, but I can’t help but wonder if he feels bad that he can’t run around like other kids. He can see them and he knows what they’re doing. Lord, please heal my boy….

  June 24, 2002—We went to visit Bambi and her new foal, Ohmeister (I’m not sure of the spelling). What a great day at the barn. Bambi is so calm around Hunter, thank God. Ohmeister is a frisky little thing, and for some reason she liked my boots.

  Hunter went fishing yesterday and caught ten fish. It wasn’t easy, but once we got him up in his stander, all we had to do was throw the line in. The fish were biting like crazy so it didn’t take long for Hunter to catch one, and then another, and yet another… a professional angler all in one day.

  As soon as the bobber went under we all started jumping up and down with excitement. It’s a good thing my aunt Dodie knows how to hook a worm and release a fish. She’s so much fun to be around, and the kids love her. She has really fun ideas that usually involve animals, nature, and making weird faces. What a blessing she is.

  July 16, 2002—Hunter lost his second tooth today, the lower-right front one. It’s a big deal… do you hear me? He’s alive and he lost a tooth and he wasn’t even supposed to be breathing and living right now! Glory to God!

  Hunter bowls, swims, and plays baseball—maybe not like all the other boys his age, but he does it nonetheless. He’s an extraordinary little kid with so much love, it pours out of him in buckets. And he’s Yours, Lord; he’s Your boy now and always. Even in the shadow of doubt, I know this to be true—my boy belongs to You. He’s covered in the strength of Your grace and the radiance of Your glory. I feel Your light wrap around our family even in great darkness. Please flood our lives with love and hope that eclipses what we know right now.

  Play the piano and shake the tambourine and bells, little Hunter, because all of heaven is listening… we’re all listening… and you play the most beautiful music I’ve ever heard.

  August 4, 2002 (Canton, Ohio—NFL Hall of Fame)—I cannot believe how incredible the last few days have been. The hoopla surrounding induction weekend is over the top. Jim is so excited, as he should be. He made it, and he deserves to be here right now receiving this high honor. Thank You for sustaining us and for strengthening Hunter so he could be present to watch and listen to his daddy’s induction. Every moment was special.
>
  Jim’s speech was by far the most memorable, all because of Hunter. [You can read his speech in Appendix E, but it won’t compare to hearing it in person—especially the part directed toward Hunterboy.] Our son’s plight set Jim’s powerful words far above the rest.

  It’s amazing my little buddy was able to endure the commotion, certainly a tribute of love for his daddy. I could tell he was so excited to be a part of this monumental honor. He made it through the entire ceremony—as sweltering hot as it was, he did it. We were all so proud. Yet, even in the midst of such a wonderful blessing, heaviness swept over my heart… Why Hunter? Why our son?

  Just when I feel completely overwhelmed, You show me You’re right here. As I glance outside our hotel window, about 200 yards away, there—elevated above all the other buildings—a yellow cross graces the sky, soothing my pain and filling my heart with hope again, even if just for now. Thank You, Jesus! You’re the only one who understands. Because of You, I have hope.

  October 8, 2002—Erin Marie writes “Trust Jesus” all over the place—on Hunter’s schedule book, all over my journals, on tiny pieces of paper scattered throughout the house. I need her reminders. I need to trust You. Sometimes it’s hard, like right now, when Hunter continues to struggle with apnea and seizures. Both of his hips are bothering him, too, and even though the brace seems to help, he appears to be very uncomfortable.

  He can’t tell me where it hurts; he has never been able to tell his mommy where it hurts. My mind wanders and I think of little boys on the playground scraping their knee, or on a baseball diamond sliding into home plate and getting all scratched up. The first thing they do is run to their mommy for a kiss and a few comforting words. My baby has excruciating pain—pain that worsens every day—and he cannot tell me a word. He can’t tell me where to kiss. Just once, I wish he could. I need him to be able to tell me so I can do something about it.

  Please eradicate this wretched disease that has come to steal, kill, and destroy the precious life of my son. Make a way, Lord, please. Do You hear me? Do You see him suffering? How long will You wait to lift the burden? How long? Until that day, we can’t survive without You… please help us.

  October 31, 2002 (Halloween)—Hunter dressed up as Stuart Little.

  December 17, 2002—Every time I read The Three Trees to the kids, I cry. That book speaks right to my fear and doubt. There is a purpose for our trials that goes beyond my ability to grasp, and I’ve just got to let go and… let God.

  Hunter’s eyes have been bothering him a lot lately so we’ve been putting eye drops in often. He is incredibly patient with all the poking and prodding we do to his body.

  Thank You for Hunter and for getting our attention through his precious life. You know what it’s like to watch Your Son suffer—Lord, have mercy on us, please. Hunter needs You. He’s so tough, but he’s getting tired. It’s so hard to watch him struggle. Don’t give up, little buddy; please don’t give up.

  Even now, after typing in the previous entry, that same wave of worry swept over me and I remember how desperate I was for Hunter to be free from pain and bodily strife. Surrendering my fears was a daily battle that I sometimes failed to conquer.

  As you can imagine, Jim’s Hall of Fame induction was the highlight of 2002 for our entire family. I’ll never forget the stillness of the crowd when Jim thanked God for Hunter, and the eruption of cheers after he said, “My hero, my soldier, my son, Hunter. I love you, buddy.” I’m certain that Jim’s speech will be considered one of the best induction speeches of all time, all because of Hunter.

  We were so thankful that Hunter was able to be there. Although Jim Kelly’s enshrinement in the Hall of Fame that day was a grand honor, Jim and I both agree that nothing compares to our son taking his place in the “Hall of Faith.”

  Chapter 11

  Hunter at Seven

  Year Seven, 2003–2004

  As you’ll see, my journals become more and more focused on God at this time rather than on Hunter and the girls. Also, I pray more fervently for my husband. I suppose at some point the realization that Hunter was going to be healed eventually, no matter what (either here on Earth or in heaven), gave me an invincible peace and comfort that allowed me to pray more for Jim, whose “illness” was rooted in his soul rather than his body.

  His was an issue of the heart, a healing only God could grant. If the heart is the wellspring of life, then I was willing to get down on both knees for his.

  January 23, 2003—I’m laughing right now because my aunt Dodie is hysterical. She had Hunter rummaging through our kitchen cupboards today while he was up in his Kid Kart. Despite his apnea and bowel issues, he still wants to have fun. He doesn’t have that much free time during the day because of his jam-packed therapy schedule and school session, so we try to get in at least a few hours of kid fun. He was also messing around in his closet and pulling clothes and stuff out of his armoire drawers. As I write, I can’t help laughing, especially because I’m such a neat freak. He had things spread out all over his closet and the kitchen. I’m certain that if the two of them were able, they would have been throwing things around the kitchen as well.

  We’ll be taking Hunter to the hospital tomorrow for a chest and hip x-ray, ECHO [echocardiogram] test, and sputum culture, per Dr. Duffner. She’s such a blessing. Hunter’s 42 inches tall now and growing; thank You, Lord.

  February 23, 2003—Erin asked me to pray over her and kiss her while she sleeps tonight. She knows Hunter and I are up throughout the night, and certainly I will pray.

  Jim and Hunter played a football game on the computer today. It’s odd, but I feel like whenever Hunter is with his daddy, there’s almost an atmosphere of love around them. An aura of protection and love enveloping them. When I observe this happening, it’s almost as though Hunter’s love for Jim is so profound that it mirrors God’s love for us.

  I see this in my son. I see his Christlike qualities and am not ashamed to admit it. There is only one Jesus Christ, and I know this; it’s just that my son is getting closer to Christ every day. Hunter takes on His attributes. The attribute that seems the strongest is his ability to show love without speaking, without writing us notes, without running to us and throwing his arms around us. I see his unconditional love for his father and you can observe the peace on Jim’s face when they are together. This is a beautiful image. If only I could capture it in my mind forever.

  I sure wish I loved Jim the way HB does. What I wouldn’t do for some of that love. I know it comes from Your heart, Lord, so please fill mine. Please love him through me. I can’t do it—please change me; change the way I feel and how I treat my husband.

  The greatest thing about Jim is that he keeps me seeking You. Please make a way! Show me how to love my husband the way Hunter does, the way You do. I thirst for Your patience, Your forgiveness, Your understanding, and Your humility…. I want to love my husband this way, I just don’t know how. To me it looks hopeless and helpless. I think Jim needs You more than Hunter does.

  March 18, 2003 (Children’s Hospital)—Heavenly Father, at times like these I selfishly long for Hunter to be with You in heaven, far away from emergency rooms, needles that prick, machines that beep… everything about this place. Help me to live each day with one foot in eternity and the other planted soundly on this earth. Grounded enough to be a great mother, wife, friend, daughter, and disciple.

  They’re telling us Hunter’s starting to lose his “involuntary blink”—the kind that we all do without thinking. This is causing him to have serious eye issues. Come on, please, God; You know he blinks once for yes. If he also loses his voluntary blink, then what? Please don’t take that from him, too! That’s how he talks. That’s how he says “I love you.”

  The whole concept of Hunter being here [at Children’s Hospital] for some greater purpose tests my faith to the extreme. My heart knows God has a plan and is in control. Nevertheless, my mind cannot stop intruding on my faith and questioning, what purpose can this serve? PLEASE
TELL ME! How can this be good? Make him better now, please!!!

  Whoa—I’m yelling at God. Jill, get a grip. Lord, forgive me and remind me of Your sovereignty and perfect will. Please make Hunter well so he can go home and play with his sisters, snuggle, take a warm bath—all the things he loves to do. He’s so brave. I’m still hopeful that You might consider healing Hunter—totally, this side of heaven—but Your ways are higher and better than mine. Help me to take care of the girls and Hunter. Please impart Your supernatural strength into my life.

  April 16, 2003—Mrs. Basinski [Erin’s kindergarten teacher] came over for a visit today. She brought a beautiful black-and-white rabbit with her, and the kids enjoyed the little cuddly critter. She also read some wonderful Easter books. She’s a wonderful friend and great teacher.

  Although it’s not my favorite medical apparatus, the CoughAssist [a mechanical device used to clear bronchial secretions] appears to be helping Hunter. Imagine that, a machine that helps you cough. As his body continues to deteriorate, I hope there’s always something—a machine and medicine, anything—to help him battle this wretched disease.

  I haven’t been able to write as often lately; we’ve been too busy and I’m completely exhausted. A recent huge blessing: Hunter was exercising his arms, moving them up and down, all by himself. Watching him try so hard and move on his own is a miracle. Do miracles always have to be huge, earth-shattering events? Please assure me that all the little hurdles Hunter achieves can be deemed as miracles. Lord, what about the little things that are profound and life-changing?

  Dear Reader, will you please do something for me? Will you look up the definition of miracle? (Seriously, grab your dictionary, go to the “m” section, and read what it says.) Our son Hunter fit every description.