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

  The Webster’s dictionary that I’m looking at right now says that a miracle is: “(1) an event or action that apparently contradicts known scientific laws and is hence thought to be due to supernatural causes, esp. to an act of God; (2) a remarkable event or thing; marvel; (3) a wonderful example.”1 Hunter’s life “contradicted all known medical laws.” (I know it says “scientific,” but just go with me here.) The doctors stopped trying to figure him out because he didn’t fit the Krabbe model found in their textbooks. He was supposed to die before his second birthday, but he didn’t. According to the definition, I would consider that “a remarkable event to marvel over,” and certainly “a wonderful example.”

  His life was a constant example of courage, suffering, joy, and so much more. And if I can be so bold, he was the miracle. I know the miracles in the Bible were different from what I’m talking about, but can’t God speak a miracle through a little boy, without words? I know that the God I worship can work miracles even now through my son.

  Let’s go back to the journal entries….

  May 18, 2003—Today is my wedding anniversary. Yippee (yeah, right). Jim and I have been married seven years. Am I supposed to be happy about that?

  Lord, You saw that Leah [a woman in the Old Testament book of Genesis] was unloved. You looked on her affliction. You listened to her cries and remembered her sorrow. I know that You see me! I know that You see my marriage.

  I feel like an old woman, like a dried-up lake, like a shriveled flower—my soul feels withered and numb. I’m lonely and afraid. Please soften my heart and change me. My desires are dead—is this because of my unwillingness to fully forgive? I’m so tired and have no energy to even try. Please rescue me from myself and from this lonely road I am traveling. Replace bitterness with beauty, sadness with a promise of love, and dread with a yearning for intimacy. I want to give up—I sort of already have… and yet this beautiful boy lying here next to me is a constant reminder to press on, to never give up—not on anything or anyone, especially his daddy.

  May 29, 2003—Hunter was checking himself out in the mirror today because he lost another adorable baby tooth. I hate to see his baby teeth go because they’re so perfect, but he’s growing and big boy teeth are coming in… and that’s awesome. As I sit here writing, I’m overcome by the simplicity of my son’s life, and yet the magnitude of suffering he endures is far from simple.

  I think HB has looked at himself in a mirror maybe a dozen times in his entire life. Unfortunately, and I hate to admit it, I spend way too much time in front of a mirror. There must be something incredibly profound in this mirror thing.

  Hunter’s free from the expectations of the mirror. That’s it. And quite possibly that’s why he radiates such beauty all the time. His cares are not of this world. Amazing, so amazing.

  June 2, 2003—Hunter has a broken arm. I can’t believe this. As hard as we try and as careful as we are, somehow he broke his arm. The fracture is right below his shoulder. We’re all shocked. He was having a hard time yesterday with apnea, probably because of his arm. As if he doesn’t have enough to deal with, now this. How did this happen?

  The doctors are thinking he might need more calcium and magnesium in his diet to strengthen his bone density, especially because he’s sedentary and doesn’t move on his own. Please help him. Even though he has a broken arm, we’re still planning on flying a kite tomorrow. When will the tears cease?

  July 18, 2003—After a trip to the hospital today and a few more x-rays, it looks like Hunter’s arm has finally healed. Thank God!

  We had so much fun dancing around in the pool the other day. All three kids were piled on top of me and I was afraid Hunter’s oxygen tank was going to fall in the water. Thankfully, it didn’t.

  Hunter’s getting longer and heavier but I can still carry him. I’d carry him even if I couldn’t. If I could pack him in a backpack and take him everywhere with me, I would. I can’t get enough of that incredible kid.

  August 28, 2003—What a whirlwind the last four days have been. Mark Schultz [a Christian recording artist] was in town for the Buffalo Bills game and he came over and performed a few songs for us. Our favorite is “He’s My Son.” As usual, we were crying.

  A few days ago Hunter went horseback riding on Bambi out at Aunt Chris’s barn. He also went fishing and stopped over at Aunt Dodie’s house to visit her pet bird, Quaker, and her dog, Peanut. I think Hunter liked Quaker, especially when he started talking.

  We’ve discovered that Ellen [Hunter’s nurse] loves taking pictures just as much as my mother and I do. She’s already given me a few mini photo albums filled with pictures that captured moments I was unable to.

  What a great gift photos are. I treasure photos of Hunter because in the back of my mind, I know they will comfort me and jog my memory when Hunter has left this earthly place. You can never have too many pictures, especially of Hunterboy. Every picture, even the bad ones (if there is such a thing)—all of them are precious reminders of Your faithfulness, Lord.

  Hunter has another loose tooth. He’s six years old. I can’t believe it.

  October 22, 2003—Robert [Hunter’s best friend] came over today with his mom. This is their second play date this month, and he’s coming over on Halloween, too. Hunter loves being with his best friend more than he enjoys being with anyone else. I’m speechless when it comes to those two boys. When they get together it’s as if the entire world around them vanishes and they’re the only two people in the world.

  Robert has introduced Hunter to the kind of silly boy stuff I would’ve never even considered for him, like mismatched socks, gooey bugs, silver astronaut blankets and space food, Bionicles and erupting volcanoes (oops, I think Jaden, my cousin Jessica’s son, introduced HB to volcanoes)—all sorts of adventurous fun. What an unprecedented friendship. I’ve never witnessed anything like it.

  You have done immeasurably more than we could’ve ever asked or imagined through their friendship. Thank You for Robert and his mother, Elizabeth. They are amazing people. I never thought Hunter would experience the blessing of a best friend, but he has, and I can’t thank You enough.

  November 3, 2003 (Children’s Hospital)—Leg x-rays and a full cast put on. Why, God—why? Doesn’t Hunter already have enough to deal with? Now he has a broken femur. What in the world is going on?

  I’m not going to let anyone touch him ever again. Two major bones broken in the last six months. This is ridiculous. How’s he going to take a bath with a cast on? All this suffering is making me sick.

  I know I should be thankful that he’s still here, but I’m so drained from all this brokenness in his body and in my heart. It’s not about me—I get that. It’s not even about Hunter; it’s about Your glory and will. Not having an answer to my nagging doubts drives me crazy. Father, I need Your lap and Your loving arms wrapped around me. Hunter needs You.

  On December 13, 2003, Hunter was taken by ambulance to Children’s Hospital. On the fifteenth, Hunter was put on a ventilator. At approximately 4:00 a.m. on the sixteenth, as I journaled the desperation of my soul like never before, a certain peace came over me and I was confident Hunter would make it home one more time. It was then that I began to think back on the extraordinary chain of events that had brought our family to this moment—the events you have just read about.

  I’m convinced that the peace I felt and the assurance I had that Hunter would survive came from God; and indeed, despite his frailty and the evil downward spiral of Krabbe symptoms, Hunter’s determined little body resisted surrender and the radiant light of his spirit was not snuffed out.

  On December 21 at 11:20 a.m., the ventilator tube was taken out and we made it home a few days later, just in time for Christmas. I wrote this letter to Hunter in the midst of everything:

  Hunter, I’m so sorry that Mommy can’t make you all better, little buddy. I will never fully understand why you must suffer so much. You’re amazing, incredibly brave, and more handsome than any prince. Your irrepressible d
etermination to beat this disease is astounding. I’m so proud of you.

  I have asked God why. Why another broken bone? Why kidney stones? Why pneumonia and apnea all the time? I’ve asked Him for you, honey—so that maybe I would have an answer for you. I was in such a fog today wrestling with all your hardships, and what God reminded me of is this: You are here. You’re alive, little buddy! I praise God for today. We have today and that’s it. Thank you for being you, Hunter. The Lord is your shield and your hiding place. He will protect you and lead you home, soldier boy.

  Chapter 12

  Hunter at Eight

  Year Eight, 2004–2005

  Once again, my journal entries shift from recording memorable moments and prayers to simple love letters to Hunter. Most of my 2004 journals are filled with letters and vignettes to my son, as well as Scriptures and quotes that were significant during our journey.

  After reading through my journals and Hunter’s schedule books, I realized there was so much that had happened that I’d forgotten about. Since Hunter was no longer a toddler, he was able to experience a lot of different and exciting adventures. Young boy adventures I still can’t believe we allowed him to participate in, like snowmobiling, sledding, and playing with reptiles. Hunter holding a twelve-foot yellow python and a baby alligator is not the safest activity, but I guess that’s what boys do. And despite my misgivings, I felt blessed watching my son have so much fun.

  February 1, 2004 (Hunter’s Haven Lodge [Jim’s hunting lodge located in Ellicottville, New York, on 150 acres of God’s country])—Maybe Mommy’s a little crazy, or maybe I love you like crazy and that’s why I let you go sledding and snowmobiling. It’s amazing how things change. I was able to let go of my fears so that you could enjoy some fantastic winter fun.

  Hunter, can you believe it? You did it! You actually went snowmobiling. Daddy would’ve been so proud of you. I can’t wait to tell him all about it when he gets home from the Super Bowl. Even though I’m a cautious snowmobile driver, it’s a good thing Grammie had a tight grip on you. Aunt Dodie and Justin drove the four-wheeler so that your suction machine was always close, just in case you needed it, but you did great. We were a sight to see. I could tell that you were having so much fun, and even though she was a little nervous, I think Grammie had fun, too. I hope you weren’t cold, buddy. We bundled you up as much as we could without turning you into an abominable snowman.

  Hunter, the bunk-bed fort you built at the lodge was so cool. I forgot the special password to get in, so you’ll have to tell me it again. Oh, and I think it’s very exciting that you know how to play pool now. You little pool shark. I don’t even know how to play, so you’ll have to teach me. I love you, little soldier—more than you know.

  April 2, 2004—Every day you grow more handsome, Hunter. I’ve never met anyone so beautiful. You’re so tall (44½ inches) and getting heavier by the day, but I can still carry you. Don’t worry—I’ll always carry you. I’ll just find some new apparatus so that I can carry my boy anywhere and everywhere. If I have to I’ll design it, and Grammie can make it. We’ll call it the Hunter Pack. Even when I’m old and gray, I’ll carry you. You are a light in our home that shines and radiates with such brilliance. You are so fun to be around and take care of. We all love you so much.

  And how about your best friend, Robert—isn’t he a blessing? Your friendship is a priceless treasure, a gift from God. Every time the two of you get together it’s an adventure. Robert always compliments you, telling you how handsome and wonderful you are. The other day he brought you a Bionicle (something you know Mommy knows very little about) and put it all together for you. You would watch him intently as he put each piece together. I saw excitement and anticipation light your eyes. You were smiling, weren’t you? After Robert had everything assembled, you, Robert, and Daddy had a battle or whatever you boys call it. Watching you play with the two most important guys in your life is very special.

  There’s talk of you going to one of Robert’s football games in September. That would be great. Please know how very much I love you, young man.

  July 2, 2004—Dearest Hunter: We went on a golf cart ride today with nurse Ellen. You enjoyed cruising around our neighborhood. We had to be on the lookout for squirrels and chipmunks, didn’t we? They were everywhere.

  As I snuggle next to you and write this, it’s 4:00 a.m. Mommy just finished doing your chest therapy and you’re exhausted. Sleep, little buddy; you need your rest. God has blessed our family in so many ways through you, Hunter. What a remarkable way for God to express His love for us by creating you. Press on, soldier boy. Have I told you lately how much I love you? I never imagined my heart could ever love anyone as much as I love you and your sisters.

  You are so smart. Do you remember that lady who came to our house the other day to check your vision? First of all, buddy, I know you can see. Just because you’re having a hard time blinking and closing your eyes doesn’t mean you can’t see. The lady was very impressed with your ability to track and follow directions. She thinks you would highly benefit from vision therapy at least once a week, so we’re going to give it a try. I’m so thankful there are so many wonderful people who sincerely care and want to help you grow and prosper.

  How about Ms. Susan, your teacher—isn’t she great? She has lots of fun and exciting ideas. I’ll never forget when she brought the life cycle of frogs over for class. I know you remember that day because that’s when the frog peed all over her pants. As many times as you and Jericka [my cousin Jessica’s daughter] have played with frogs, not one has ever peed on you, thank God. Ms. Susan was a good sport, wasn’t she? We all laughed and laughed. Aren’t you glad Mommy loves to take pictures, because we caught this one on film.

  I want you to know how excited I am that you’ve been reading the Bible almost every single day. God has a lot of very important things to tell us, doesn’t He? I love you, best boy ever—and Jesus loves you more… He does. His love is in you and we all see it… we all see Him through you. Thank you for being you!

  August 30, 2004—Do you have any idea how much I love you?

  Hunter, I love you more than…

  … the most stunning sunset to ever color the sky.

  … the most beautiful butterfly God has ever created.

  … my heart can handle.

  … my favorite things.

  … sleep.

  … I can understand.

  … my most memorable happenings.

  … you will ever know.

  … myself.

  … all the world’s most priceless treasures.

  … anything.

  … life itself.

  … words can say.

  September 9, 2004—Of all the gifts I’m most thankful for in this very moment, Lord Jesus, You’re it. In this world with all its abundance, You are life to me. You are everything. You keep on giving; there is no end to Your grace and goodness. In You I am held together. Held together with a love that binds the parts of me that cannot function alone. If I rely on my brain, it will confuse me. If I rely on my body, I will fall apart. If I rely on other people, they will never meet my expectations. If I rely on my heart, it will bleed and break.

  When I look to You, Lord, and rely on You, I am whole and I can live. I am able to think with my brain, stand on my feet, love people for how You created them to be, and possess a heart that beats for You and allows me to go on. I know You hold Hunter. You hold our entire family. Thank You for Hunter. We trust You with every breath he takes. You give and You take away.

  October 31, 2004 (Halloween)—Hunter and Erin Marie dressed up as Spider-Man. Camryn was Strawberry Shortcake. I was hoping I could get Jim to dress up as a giant hamster, but he wouldn’t go for it. He did his usual: a camouflaged hunter. It figures. No wonder our son’s name is Hunter. I love that name.

  Robert dressed up as Larry the Cucumber from Veggie-Tales and HB was supposed to be Bob the Tomato. How in the world was I supposed to make a tomato costume? Now that I’m
thinking about it, I guess Hunter could have worn all red—his favorite color–but what fun is that? I think he was a great Spider-Man. I’m amazed that he tolerated the mask over his face, but he did. What a resilient little boy.

  Jim was so sad the other day, and even though he didn’t cry, I think he wanted to. He was talking about our nephew Zac, who’s playing Little League football right now, and how he wishes Hunter could do the same. I often forget about his pain. Forgive me, Lord, and help me to see beyond my own anguish so that maybe somehow I can comfort Jim, even when I don’t feel like it.

  Please mend our broken hearts. We’re sad that Hunter will never be able to fulfill all the hopes and dreams we once had for him. He’ll never throw a touchdown pass to his cousin or storm the end zone for his team. He will do, and is accomplishing, so much more, I know, but these are the desires of a daddy’s heart, and it’s excruciating. Please, Lord, I haven’t asked You in a while but it’s heavy on my heart. Can You feel the weight of my heart pressing You to heal Hunter? Please heal him. Please heal all of us. Help us to never lose hope and forgive us for the times when we doubt You and all You can do. Help us to trust and believe that You have the better plan… always.

  November 22, 2004—Hunter, here I go again. I know how much you love when Grammie and Mommy read these to you, so here’s more for your precious little ears to hear and for your heart to receive.

  I Love…

  … when you, Erin, and Camryn snuggle up and watch a movie together.

  … when you watch old football games with your daddy.

  … when it’s just you and me.

  … how you endure.

  … that you remind me to be tough whenever I don’t feel so good.