Archive for July, 2010

July 21, 2010

Hunter’s heart & hope….

After news of Hunter’s disease hit local and national media circuits, we were inundated with fan mail from all over the country. The outcry of support, get-well wishes, and prayers was astounding and encouraging. Through the thousands of letters, it soon became very apparent that we were not alone in our plight to help Hunter and kids like him. We had to do something.

We were also overwhelmed with media requests for television, print, and radio interviews. Everyone wanted to know what was wrong with Jim Kelly’s son. Oprah wanted to know. People magazine wanted to know. ESPN wanted to know. We were determined to put a face on this horrible disease most people had never heard of. The world needed to know about Krabbe Leukodustrophy and other inherited neurodegenerative disorders. So in September 1997, when Hunter was eight months old, the Hunter’s Hope Foundation was established.

I could share the unprecedented journey that our family has been on since the inception of Hunter’s Hope, but I’m not going to do that. (However, if you’re interested in learning more about the foundation and all that God is doing through Hunter’s Hope, please visit our website at www.huntershope.org.) Instead, I’m going to introduce you to some special children I know and love dearly. I can’t wait to tell you about these kids; they’re amazing. I’ve had the incredible privilege of meeting many precious children over the past twelve years, and I love every one of them. I would love to share all their stories too, but that would fill at least a few more books.

We’ve been on an emotional roller-coaster ride over the years, and at times we’ve wanted to give up and walk away from it all. But we didn’t and we won’t. Determination and dedication continue to prevail even though discouragement and doubt always lurk nearby. When our weaknesses and inadequacies tempt us to throw in the towel, another beautiful child gets diagnosed with Krabbe disease and we press on. And Hunter’s legacy lives on, beyond our hopes and dreams and by the grace of God, far beyond our vapor of life here on earth.

I continue to be in awe of how God has used our beloved son to spread hope, life, and love to countless people all over the country and the world. Yet just as inspiring are the children for whom we do what we do at Hunter’s Hope. They take our breath away, and their very lives encourage each of us to be a better human being . . . a patient and gentle spouse . . . a more gracious and loving parent . . . a sincere friend . . . a good listener . . . and a person who loves deeper and forgives every time.  Though most of these kids will slip in and out of our lives without ever speaking a single word, their lives are filled with a contagious love that speaks clearer and penetrates the soul deeper than words ever could. They’re unforgettable, and I’d like you to meet some of them.


***


Mikey is from New Jersey. I was shocked when I saw him at the Hunter’s Hope Family and Medical Symposium this year, because he had grown so much since the last time I laid eyes on him. He’s a stocky young fellow now with leg muscles made for kicking soccer balls. His blonde hair and blue eyes were as bright as ever, and Camryn was thrilled when she found out that he was coming, because it meant her best friend, Amanda (Mikey’s older sister), was coming, too. When Cam and Amanda get together, you never see them. They’re usually off somewhere having so much fun that we have to pry them away from each other at the end of the day. They have a lot in common, and walking through the Krabbe battle with a beloved sibling is at the top of that list.

Mikey usually hangs out with Chance and John. John didn’t wear his vest this year, and everyone who knows him noticed. I heard a number of people ask him, “John, where’s your cool vest? I was hoping to see a few new buttons this year.” John’s vest reminds me of a Boy Scout. It’s covered in all sorts of pins and medals, honors only a cool boy like John and those who know and love him can fully appreciate.

When the boys get together, they usually hang out with their wheelchairs all lined up in a row next to each other near their moms and dads. They’re affectionately known as “The Boys Club.”

This year, little Miss Madison was the only girl with the courage to hang out with The Boys Club, and what a sight to see! We caught John trying to hold Madison’s hand a few times even though he knows he’s way too old for her. They all have Krabbe disease. And they all radiate a hope and joy uncommon in our world today.

Every year I get to hold and snuggle a few of the kids, and this year it was Elias, Chance, and Madison. Elias reminds me so much of Hunter when he was little, so holding him was a special treat that brought back many very personal memories. Once he was out of his wheelchair and into my arms, I didn’t want our time together to end. I wanted him to fall asleep close to my heart like Hunter used to. Elias has long eyelashes and gentle brown eyes that penetrate your soul. He fit perfectly in my lap with his head tucked into the bend of my left arm. As I held him for as long as his mom and dad would let me, I ran my fingers through his soft brown hair and gently traced his eyebrows and little nose with my forefinger.

He reminds me so much of Hunter, and his birthday is in February, too. It’s hard, but the joy of being a part of his life, even if only for a brief time, is worth it. Elias isn’t quite old enough to be in The Boys Club yet, but he managed to get some quality time in with his buddies during his five-day stay at the symposium. Elias’s mom and dad are crazy about him, and their fear of losing him is evident. He wasn’t diagnosed with Krabbe disease early enough, so a cord blood transplant wasn’t an option for him. I hope and pray he’ll be back next year.

Chance is my buddy. I have watched him grow into a strong, handsome young man over the past four years. I was surprised at how mature and grown up he looked this year. Chance’s birthday is the same day as my wedding anniversary, and he also reminds me of Hunter—when he was older. As I write this, “Chancey Pants” (his mom calls him that) is eight years old and thriving despite the countless hurdles Krabbe disease throws at him daily. He’s a tough kid and, like most of the young fellas in The Boys Club, Chance was diagnosed with Krabbe at fourteen months—too late to get a transplant. But he’s brave, and also like his pals, he continues to persevere in the battle for his life.

I could feel how much Chance grew over the last year when I held him in my lap.

“Chance, you are getting so big,” I told him. “What’s your mommy feeding you anyway?”

Like Hunter, Chance learned how to communicate by blinking once for yes, and while he relaxed in my embrace we had a wonderful conversation. My fingers were drawn to his thick, brown, wavy hair, and my heart was his for a time. “Chance, your big-boy teeth remind me of Hunter. And I can tell you take such good care of them, right, Mommy?” He blinked, and I glanced over at his mother, Anne, and she smiled. Anne is tough and hopeful. She has no illusions about her son’s prognosis, but Chance is so full of life and joy. So they courageously persevere . . . together. Hopefully he’ll be back next year, too.

Hopefully they’ll all be back.

Madison is from Rochester, New York. She’s beautiful. Madison’s mom always makes sure Madison is dressed in adorable girlie outfits, usually every shade of pink, yellow, and purple. And her shimmering blonde hair is often decorated with fancy barrettes, pigtails, or braids. Madison was born six months before New York State started testing newborns for Krabbe disease. Had she been tested at birth, she would’ve been eligible for a cord blood transplant, which would have made all the difference in the world. But she missed the test. And every single minute of every day she lives, it’s a battle. And yet there’s a radiance about her that is unmistakable.

In the midst of all the suffering these children endure, there is hope and peace. And the love that pours out of their parents is so abundant and unconditional. These are the kind of people you want to spend your time with, pour out your life for—you want to be like them because you know they’re real and authentic. I’m so thankful God brought us together for such a time as this—to love, pray, laugh, and cry together, and to carry one another’s burdens and extend a comfort only we can to each other because we’ve been there; we get it. It’s extraordinary.

Gina, now she’s a fireball. She’s one of the funniest, spunkiest kids I know. Gina had a cord blood transplant when she was just three weeks old and she’ll turn double digits, ten years old, a few days before Christmas this year. Her older brother Nick was also born with Krabbe disease, but there was no treatment or newborn screening available for him in 1986, so he died at twelve months. She never got to meet her brother, but she will someday.

Even though Gina can’t do everything kids her age can, she’s a typical kid who just happens to need a little extra help to function on a daily basis.

I watched her dance around and around in her bright pink power wheelchair in front of the family audience for the Symposium Family Talent Show. Her song of choice was “Camp Rock” from the popular Disney movie. Her nails were painted bright pink to complement her sparkly bracelets and glittery Camp Rock t-shirt. Gina loves to dance, even if only in her wheelchair. Hope radiates from her contagious smile, and you can’t help but rejoice whenever you’re around her.

I e-mailed Gina’s mom, Anne, today to let her know that I was writing about her daughter, and after reading her response, my heart was so full that I just had to share what she said:


I prayed for you before I ever knew you, Jim, Hunter, and your family . . . after Nick was diagnosed on December 23, 1986 (Gina was born December 23, 1999, thirteen years later). I was told that I would never meet another family with Krabbe, nor would there ever be any medical treatments for children born with Krabbe. I knew at that moment that it would take a family with great love and a much higher profile to be affected by this dreadful disease to prove those doctors wrong. I know that you and Jim were chosen for this endeavor to enlighten the world about Krabbe, and to also bring hope through Jim’s successes—and your inspiration and love—to save all of the children born with Krabbe and other rare genetic diseases. I knew that God would send someone to help our children—another child to bring some hope to other families and other children. I thank God for Hunter and your family.

That’s what Hunter’s Hope is all about. The children and their families, the heartbreak and the hope.

Gina and her girlfriend Laura are like sisters whenever they get together at the symposium. Laura is adorable and super-sweet. Although she and Gina have different personalities and unique interests, they have some very important things in common. Like Gina, Laura had a cord blood transplant, and she, too, has a brother in heaven. His name is Joshua and, like Gina, Laura never met her big brother either. But someday she will. If her brother were alive today, he would be seventeen years old.

Laura participated in the talent show this year as well. After her daddy helped her prepare on stage, Laura played a song on her lap harp: “The Ants Go Marching.” But she changed the title to “The Cats Go Marching.” A look of pride blushed over Laura’s face when she finished her song and we all erupted with applause and praise.

These kids are amazing. None of them should be here right now. They have Krabbe disease. Kids who suffer from Krabbe don’t participate in talent shows; they can’t dance and sing and play. And yet they can and do. Because by God’s grace there’s a cord blood transplant now; there’s a treatment for this horrifying, life-stealing disease. There’s hope! And that’s why there’s Hunter’s Hope.

You can’t be around the Hunter’s Hope kids and not catch a wave of their determination, joy, and courageous spirit. And to think that tragedy and suffering brought us together to form an unlikely bond that will endure beyond our lifetimes . . . it’s irrational and immeasurably more than all we would’ve imagined or hoped for. It’s an unspoken love without boundaries that mends brokenness and severs barriers. Extraordinary!

Hunter needed a miracle. Or maybe he was the miracle. Because from his life was borne a greater life that reaches out and rescues hopeless families and countless children we’ll never know.

That’s our hope and our future. And maybe that’s what God meant (as it pertains to Hunter, our family, and all who are touched through Hunter’s Hope) when in the Old Testament book of Jeremiah He proclaimed, “‘For I know the plans I have for you’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future’” (Jer. 29:11).

We’re hopeful . . . very hopeful . . . that our future is secure and safe in the hands of a mysterious God whose love is constant even when we don’t always understand His ways. That’s our hope and future. How else can you explain the incredible hope that blossomed from a child’s suffering?

It’s indescribable. And I suppose it should be, since the little boy behind it all never spoke a word. Yet his unspoken love . . . changed everything.




July 19, 2010

Someday…

Tonight, I will head into the studio again to read the audio version of Without A Word – How A Boy’s Unspoken Love Changed Everything.  Writing and now reading our memoir has been one of the most challenging yet joy-filled experiences for me.  Challenging in that I have had to relive moments that I wish never happened…moments that crushed me in every way.  Joy-filled because I continue to be amazed by the God who rescued our family in every way.  The God who makes all things new, wipes away all tears and turns ashes into beauty.  Our story is His story.  All that God has allowed our family to experience up to this very moment has been ordained through love and providence.  This love I speak of is unfathomable…beyond our grasp…too profound to comprehend in the finite.  And yet, this love was made known to us in the simplicity of a single breath through which an indescribable, unspoken love was spoken.

Ironically, (or perhaps not so ironic at all but quite possibly God’s perfect timing) – I read the following excerpt from Without A Word during my previous taping.  What I find so interesting about this is the fact that this week (July 21- July 25) is the Hunter’s Hope Family and Medical Symposium.  As I prepare my heart for the symposium and all that will take place during these days ahead reading this journal entry reminds me of some very important truths that I must continue to cling to every day of my life.

First of all, God is sovereign.  As I wrote this journal in 2005, saying good-bye to Hunter was the last thing on my mind.  And yet, in less than three weeks he would be gone.

Job 12:10 – “In His hand is the life of every creature and the breath of all mankind.”

“…Your eyes saw my unformed body.  All the days ordained for me were written in your book before one of them came to be.”

~Psalm 139:16

I need to be reminded that in all things, in every heartbeat and all circumstances surrounding life and the breadth of it, all things are in HIS hands.  This truth brings me indescribable, lasting comfort because He’s able.  He knows.  He sees.  He cares.  Nothing comes into our lives, NOTHING—unless our Heavenly Father has ordained it for His glory and our good.  Trust me, I know this is hard to grasp, but still I have to ask, what are you going to do about it? What are you going to do with what you don’t understand?  Will you carry the burden and brokenness of the unknown to Him?  Will you trust Him with this divine intrusion?

This journal also reminds me of how God transformed my thinking.  Instead of watching Hunter die from Krabbe disease, I enjoyed and savored every single breath he took.  I watched him live.  Hunter loved life.  Though riddled with suffering and strife… my boy loved life.  Do I love life like this?

Do you?

Am I able to see through and surrender the struggles, hardships, and inconveniences of my passage through time to the overarching beauty of life?  Despite it all, can I enjoy what I’ve been given from the hand of a gracious God?  Do I really believe that His sovereign purposes envelope my life and all that concerns me?  Knowing God should transform my thinking in every way.  Light should burst forth in the midst of the darkness and the unseen should be more real than what is beheld with the natural eye.

Finally, (although I could write for hours), the concluding thoughts of this journal entry from Chapter 12 of Without A Word reflect the source of my hope today and for all eternity . . . that someday you and I will be in heaven with Jesus forever. Someday I will be in heaven with Jesus forever.  This is it.  This means everything to me.  Someday, a day that only God knows (since Psalm139: 16 confirms that He has ordained every single one of our days) I will be gone.  And when I pass from time, I will forever be in heaven with Jesus, of this I am certain.  Not because of any notable achievement I have accomplished, as if I could earn my way there, but ONLY because of what He has done on my behalf and on your behalf.  He made a way and only because of what He has done can I count on being there someday.  What hope… what peace… what indescribable joy this brings me.  With freedom and anticipation I live and persevere because…

…someday.

And “someday” will be here before you know it.

Here’s my journal entry:

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.

July 2, 2010

“How Could I Be So Forgetful?!” By: Anna Hill Grantham

I bawled my eyes out to my husband, Sammy last night. The past few weeks have been miserable for me. Through a series of challenging events and circumstances, I found myself in the midst of old habits and as needy as ever (in a bad way). Ultimately, I needed God to remind me that apart from Him, I can do nothing.

A very wise new friend spoke of how quickly we forget and it really resonated with me. She spoke about how the same people who saw Jesus raise Lazarus from the dead, persecuted and ultimately killed the Son of God, and how the Israelites longed for the chains of Pharaoh after God had granted them freedom from slavery. As I heard her say these things, I realized that I was doing the exact same thing.

My natural state of sinfulness is a girl trying to earn God’s favor, trying to “fix” myself rather than wholly lean on Jesus’ name. I become insecure, paranoid, and just positive that I am the most hated person in the world. The month of June was FILLED with awkward, challenging, discouraging and even hurtful situations. Rather than bringing them to God and letting Him carry my burdens, I tried to carry them alone.

Before I knew it, I was rebuilding the walls that God has so graciously torn down. Vulnerability is impossible for me to accomplish in my own strength. In my flesh, I am very fearful of rejection and abandonment. I know myself too well to see any reason why anyone (including God) would love me or want anything to do with me. Like the Israelites, I was beginning to forget that although freedom is scary, it is so much better than the bondage of fear, insecurity, isolation, people pleasing, emotional eating, anxiety, and self reliance.

The past several days should have filled my heart with joy but because of all of the baggage I was toting around, I found myself feeling so very sad. Last night, God used my precious husband to remind me of the words that I usually say to him! That because of Christ, I am valuable and dearly loved no matter what anyone says, does or thinks about me. He reminded me of the huge victories God had granted over the past few days… I am so frustrating! Was I really in this place again? So inwardly focused that I can’t even enjoy the enormous blessings that God has been so gracious to give? Ugh!

“God has chosen the foolish things of this world to shame the wise, the weak things of this world to shame the things which are strong….” This verse almost makes me laugh. I am so foolish and so weak, yet God has chosen ME! Paul says we can boast about our weaknesses, because power is perfected in weakness and Christ’s power is dwelling in us!

Perhaps the way I have seen this most in the past six months is through the life of sweet Karis Almy. Diagnosed with a disease called Krabbe, I have watched this precious baby lose so many abilities that we take for granted everyday. Yet, she is the strongest person I know. Though she is in pain, she rarely cries. And what moves me the most about Karis is that cognitively, she is just like any other one year old, but due to the demyelination of her nerves, she can’t use the body God has given her the way I know she wants to. But, she is so content. Her spirit is so sweet, so patient, so joyful. She is so “weak” by the world’s standards, but Christ’s power dwells in her, and it’s unlike anything I’ve ever seen.

And what perspective that gives me in my struggles. Like Paul (and like Karis), I will be “well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.” Lord, help me never forget!