Without A Word – Book Club Question #3…Why did you write Without A Word?

In almost every interview Jim & I have done, this question inevitably gets asked…”Why did you write the book?”

Some of you may have already watched this video that answers this very question.  If you have yet to see this, I hope it gives you some insight into why we chose to share our story through Without A Word.  But, in addition to the answer that I give in this short clip, I’d like to add what I said in a previous facebook post…I wrote Without A Word – How a Boy’s Unspoken Love Changed Everything because Hunter’s couldn’t and his story needed to be told.

One last comment – We all have a story.

When all is said and done, your life…my life, will tell a story.

What kind of story are you telling right now?

Beyond Measure…the missing chapter.

When I wrote Without A Word, the completed manuscript was well over 100,000 words.  Yikes.  Thank God for editors.  What follows here is one of the deleted chapters.  I had a struggle letting this one go but eventually realized that my mother was woven so perfectly throughout the overall story.

But here it is…the missing chapter!

April 19, 2001- Today is my mom and dad’s anniversary.  They’ve been married 32 years and they’re still going strong, thank God.  I don’t know what I would do without my mom.  She keeps on giving and giving some more.  She’s so selfless. How does she do it?  Her joy is abundant and peace radiates from her.  Please protect her and keep her Lord. You know I fear losing her – she’s the only one who seems to understand me (except for You of course). I want to be an encouragement to her like she is to me–like she is to all of us.  She’s so amazing with the kids – especially Hunter.  I love the way he looks at her–if she wasn’t my mother I would be jealous of his love for her…

She was just eighteen and fresh out of high school when she had me.  Certainly she never pondered over what her life might become as a result of bringing me into the world.  My mom and dad were just trying to make ends meet.  They were trying to raise my brother Jack and I while growing up themselves for heaven’s sake.  It must have been so trying, and yet the struggles she faced as a young mother of two were nothing compared to the ordeal of being Hunter’s grandma.

I have so many memories of my mother, none more precious than watching her love my son.   This love was a love that everyone could see and feel when they were around my mother and Hunter. When they were together, the warmth of that love would emanate from them.  I learned how to be a better mom by observing my mother care for and be a grandmother to my three children.

During the most devastating time of our family’s journey she stood strong and confident for all of us, even though I knew she wanted to crumble.

One distinct memory of my mother I hold dear to my heart and will never forget was when Hunter was just three years old. He was really sick and struggling so much we thought for sure he was going to die.  His breathing was very shallow and we had done everything we knew to do for him at the time.  In order to monitor his breathing, my mother and I took turns holding Hunter throughout the night.  It was a long night, but we did it together and Hunter ended up going into the hospital by ambulance early the next morning.  I’ll never forget that night with my mom.  We cried, prayed, and even sang to Hunter all night long.

We did all of this together. There was no taking turns so that one of us could rest, we put our efforts toward comforting Hunter together so he would be able to feel two times a mother’s love. I believe that night we were all getting something we desperately needed from each other.

My mom is an amazing woman.  The love and friendship we share is a result of walking through heartbreak and suffering and enduring the unthinkable together.  Had we not surrendered our lives to a purpose beyond ourselves we might not be as close as we are today.

She’s my best friend.  She’s the one who knows me better than anyone else and loves me anyway.  My mother is the one who comes when I call, for whatever reason… no matter what.  She stands in the gap… no matter how wide and deep and treacherous the gap may be.   Her prayers are most fervent on my behalf and she’s always praying.  Always.  I don’t ever have to ask her to pray for our family and me because I know she’s praying.  And she’s not only praying-she’s rallying the troops to pray too.  Because she gets it.  It’s crystal clear to her that we can’t do this alone, that she and my dad can’t carry the burden for us… we need help.  We need prayer warriors bending the knee for our entire family.  We need the troops to rally, and she’s not afraid to ask-she’ll do anything to take care of her family.

I’ll never forget an experience with my mother during a typical service at our church one Sunday morning.  Occasionally at our services the senior pastor would ask those of us in the congregation to raise our hands if we had any pressing needs that required prayer.  People seated nearby would then gather around and lay their hands on the one requesting prayer. Once he was sure those desiring to be prayed for had the necessary support, our pastor would then pray.  The prayer services are very biblical, but coming from a traditional Catholic background the whole laying on of hands concept was intimidating.  Moving your hands (or any part of your body for that matter) at all during a church service was not something we were accustomed to.  So even though my son struggled to breathe every single day of his life and I had every reason (and then some) to raise my hand for prayer, I didn’t.  Pride.

But then my mom came to service with us and she was so bold… she raised her hand.  Sure enough all these people moved in to place their hands on her and I was standing right next to her and so I placed my hand on her shoulder… and then our pastor prayed.  After watching my mother move and behave with such courage that day, things changed.  We were both in tears when prayer was over and I leaned over and whispered to my mom.  “I can’t believe you raised your hand.  I’m so proud of you.”  And she looked at me and said “Jill, I’ll do anything for Hunter, anything.”  And she did, she always did. And she still does.

I don’t deserve to have her in my life and yet she’s my mom, my cheerleader, and the one I talk to everyday about everything and anything.

She didn’t have to leave her six-figure job when Hunter got sick… but she did.  She didn’t have to take care of Hunter as often as she did so that I could get some rest… but she did… gladly.  I want to be more like her.  I want to pour out my life for the sake of others the way she does.  I want to have a generous heart that lives to encourage people and give in abundance… a heart like my mom’s.  I want to spend my life for the sake of making someone else’s day a little better–because that’s what she does, everyday.  When I’m in line at the McDonald’s drive thru I want to buy lunch for the strangers behind me or bless the worker with a huge smile–because that’s what my mom does.  All the time.  I want to spread joy too and see things most people miss because they’re too busy.  I want to listen… really listen with my ears and my heart… like she does.

She doesn’t just care about her family, she cares about people, strangers… people she doesn’t even know.  Her compassion spreads to everyone who crosses her path or that needs her prayer.   People notice her smile and the passion and joy that radiate from her.  This is not just a trait a daughter sees in a wonderful mother, it’s obvious to all that know her.  And as strange as it may be in these self-absorbed times, people that don’t even know her sense the way she sincerely cares about them when their lives touch.  They see that she’s different.

My daughter Erin said something to me not too long ago that captures the kind of woman my mom is.  “Mom, I hope this doesn’t make you feel bad or anything but I love Grammie as much as I love you.”   Erin loves my mother.  They have such a close bond that I wouldn’t doubt it if Erin told my mother her deepest secrets, secrets she hasn’t even shared with me.  Grammie is trustworthy and faithful and yet she’s not perfect.  No one is.  Her weaknesses and imperfections are just another opportunity for her to display a trust in the Lord that makes you want to run to Him for everything.

She’s a control freak, or type A personality, and in many ways so am I.  She’s meticulously professional, writes everything down and knows her schedule but I’m not organized like that.  I’m getting much better but she’ll be the first one to tell you that I need help.  In fact she’s the first one to call me out on any area in my life that needs some adjusting–in other words, she’s not afraid to get in my face when I need it.  And sometimes (more often than I’d like to admit) I need to be told the truth–in love of course. We’re a lot alike and yet very different but what we do have in common makes all the difference.

We both love Jesus and desire to love Him more.  If we talk and He’s not part of our conversation, there’s something seriously wrong.  We’ll often call each other with a “God-story” or share a specific scripture either one of us needs to hear at just the right time.  I feel blessed beyond measure.  I know how awesome God is because He blessed me with a mother who is a teacher, best friend, and sister in Christ.

Our relationship and close friendship hasn’t always been so incredible.  Not because of anything my mother has done however. I joined a sorority as a college freshman, need I say more.  Although I was a put-together-mess, she loved me anyway and so did my dad, even though he didn’t always show it.  I don’t know if I would’ve been as patient and loving as they were.  As rocky as the road I chose to travel down grew, the more grace my mother extended.  And then I met Jim.

Somehow in the midst of it all, she was able to extend more grace and more love.  How did she do it?  The strain on the relationships in our family as a result of Jim’s choices, my weaknesses and Hunter’s sickness was evident at times. And though my mother and father had their own issues to wrestle with, they’re still married and the way our culture continues to move, that’s huge.

As a mother now myself, I recognize the limitless sacrifices, selfless devotion, and faithful love my mom poured out for my younger brother and me all those years.  Her commitment to family was evident in her constant giving, loving discipline, and tender encouragement. I don’t know where I’d be or how I would have met the daunting challenges I faced if not for her example of what love and motherhood are all about.

I can’t wait to watch Hunter and my mother snuggle again someday and I can only imagine what he’ll say to her when he sees her again.  He loves her so much and so do I.

Without A Word – Book Club Question #2

QUESTION:

How do you feel now about sex before marriage/ living together, and what kind of discussions do you have with the kids about it?

This is such a great question.

Just the other day, Camryn (our 11 year old) had a physical exam.  She needed certain shots for school and there were some additional, optional vaccinations that were also discussed at the time.  One such vaccine (unfortunately, I can’t remember the name of it.  I think it was Gardasil) was introduced and enthusiastically encouraged during our doctor visit.

The following quote from an article in Time Magazine will help sum up what the doctor tried to explain to me.

“The U.S. Centers for Disease Control (CDC) recently advised parents to have their middle-school-aged daughters vaccinated against a common sexually transmitted disease closely linked to cervical cancer.  But legislators in 10 states are seeking to go one step further and require vaccinations against the human papillomavirus (HPV) for all girls entering middle school.

HPV is an increasingly common sexually transmitted disease and one that scientists say is linked to 70% of all cases of cervical cancer. Gardasil, the first vaccine to fight cancer, was approved by the Food and Drug Administration last June.”

After she very thoroughly explained HPV to me I told her that we were not interested in this type of vaccine right now.

She persisted…

I continued to hold my ground.

While all this back and forth was going on Camryn kept giving me the big eyes as if to say, “Mom, I thought I only had to get one shot today.” Before the Nurse Practitioner (who I really like by the way) finally gave up she graciously spoke some final words of encouragement.

“You know Jill, we need to be realistic here too.”

With that I responded, “Realistic as far as the world is concerned or how we believe our daughters can live according to what God has planned for their lives.”

So, to answer the question, “How do you feel about sex before marriage/living together, and what kind of discussions do you have with the kids about it?” I absolutely, unequivocally believe that God’s perfect plan for my two girls is abstinence until marriage. I also believe that living together is out of the question.  Jim is with me on all of this.

I don’t care what our culture says!

I don’t care what other kids are doing!

I think trusting in God for this is very realistic. In fact, I pray for my daughters regarding their purity almost daily, and not just their physical purity but their emotional, mental, and spiritual purity as well.

Make no mistake about it; I am keenly aware that my girls will have to choose to remain pure when pretty much no one but God is watching. As a parent I’m trying to pass my convictions on to my kids to protect and guide them through the many dangers they will face as they pass through time. Life can be a spiritual, intellectual, and emotional mine field at times and premarital sex can cause untold damage not just physically, but in these three other areas as well. I don’t have all the answers and they realize that, in fact that is why I need the Lord and His Word to guide me, and why I hope with all my heart that my girls follow Christ as well—because they won’t have all the answers either. But Jesus always will, and will forever be their answer just as He is mine.

I know that they will have to make these decisions on their own when the time comes—and I know the time will come. Realistically, I can hope they’ll trust in what they’ve learned about their Creator and His love, and not cave to the pressure they will face. It will be hard, there’s no doubt about it.

I have shared with Erin on a number of occasions how her father and I feel about all of this. I have discussed the truth about the decisions that I (we, Jim too) made before I (we) became a follower of Jesus.  I believe the truth will always set us free. Erin needed to know that I did not consider God’s perfect plan when I chose to move in with her dad.  But, this does not mean that she was ever unwanted in any way—ever.  God knit her together in my womb and at just the right time she was born.  God purposed before the creation of the world that He would redeem our choices through His Son, Jesus.  Because we are His children, He has redeemed our entire lives—past, present, and future.

This is awesome news.

As far as Camryn is concerned, she’s still young and not quite ready to talk about God’s beautiful plan for sex.

As always, we take one day at a time, trusting Him in all things—for everything.

Thank you for the great question Cindy.

Without A Word – Book Club Question #1

QUESTION:
for Erin & Camryn- What are the pro’s & con’s of being the daughters of celebrity parents especially since your Mom became a best selling author? And do you ENJOY watching football?

Erin…

“One of the “pro’s” about having celebrity parents is that we get to do special events with our mom and dad…like meeting other celebrities (Justin Beiber, American Idol contestants, President George W. Bush, the Jonas Brothers, Tim McGraw).  We also get to travel to different states with our parents, which is very exciting.”

“I think it’s very cool that my mother’s book is out and doing so great because we are able to share our story with so many people…and that’s awesome.”

“Some of the “con’s” that go along with having “celebrity parents” is when people interrupt us when we are out for dinner to ask my dad for an autograph. And when we are on vacation, people always recognize my dad so we can’t really ever get away.  It also bothers me a lot when people say negative things about my parents when they don’t even know them at all…that really upsets me.”

As far as football goes…I absolutely love watching football.  Even though the Buffalo Bills are not very good, I still “Billieve”.

Camryn…

“Since my mother’s book has been published, I’ve been able to travel to different places with my mom and dad like New York City.  Whenever my parents have a book signing, my sister and I get to sign books too and that’s very cool.”

“I agree with what Erin said too…because my parents know people we get to meet other celebrities…like Justin Beiber.”

Some of the things that are “con’s” of having celebrity parents would be that too many people crowd around my dad and that bothers me.

“I wasn’t alive when my daddy played football so I don’t really know about this question. I like watching football when the Bills score touchdowns.”

The New York Times Best Seller List…and me.

Jim and I had just landed in Pennsylvania when we got the news: Without A Word—How a Boy’s Unspoken Love Changed Everything, would debut at #18 on the New York Times Best Seller List!

Tears filled my eyes as our editor Jana shared the incredible news.  Barely two short weeks had passed since the national release of our memoir, and we had been honored with a spot on the prestigious Best Seller List—amazing.  My immediate response to this remarkable news was an overwhelming longing to hug my son, Hunter… the boy who never spoke a word.  My arms ached to cradle him and thank him for being such a willing vessel for the Lord.

Since that day, I’ve been wrestling with a lot of things.  I think sharing my journal from this morning will explain what I’m talking about.

October 5, 2010…

I’m not going to be a number watcher!  I’m not going to set myself up for all this non-sense.  It’s emotionally and mentally draining. Just fickle and worldly.  Lord, thank you for reminding me to fix my heart and affections on You alone.  Thank You for being sovereign over everything… including bestseller lists.

I have so much to learn.

Forgive me for my tendency to get caught up in what is temporal; in the futility of the literary world built on the shifting sand of marketing strategies, promotional efforts, and numbers games….

Thank You for revealing that which is in me that is not of You.

Thank You for being so incredibly patient, gracious, and gentle with my heart.

I’m Your girl.

There’s no doubt about it.

You won’t leave me to my own selfish pursuits.  Your grace stops me in my tracks.

Your passion for my all delivers me from the grave of pride.

Certainly, Your all consuming love draws this desperate daughter of Yours back to her knees.

It’s all for You Lord.

Without You, I’m empty and vulnerable to the enemy’s wicked ways and the worldly temptations trying to drown out Your voice as they clamor for my attention.

This will not lead to disappointment if I keep my passion and purpose solely on You and Your glory.

You are my satisfaction…

My joy, my hope, my future…

My everything.

Help me to live a life unhindered.

And just as my life and times are in Your capable hands, everything about, Without A Word, is in Your hands.  I have no claim or control on any of this.

It’s Yours.

So there you have it.

Pride.

It’s ugly and messy.  It eats away at your joy while it steals your gratitude and contentment.

Thankfully, God isn’t finished with me yet.

He continues to mold and shape me…

…and you.

Every single day that goes by we are a work in progress.  The clay that is our lives is being fashioned into an incredible reflection of God the Son by the Creator of all.

Hang in there…

And join me…

…being confident of this, that He who began a good work in you will carry it on to completion until the day of Christ Jesus. (Philippians 1:6)

The Gift of Pain

This season that I find myself in right now is a whirlwind of great joy and deep sorrow.  Without A Word – How a Boy’s Unspoken Love Changed Everything has taken our entire family on a journey into the hearts and homes of many.  During this time of intense promotion for the book we have been asked to participate in numerous national and local media interviews.

Today I was interviewed by a gentlemen named Mike.  In fact, I just got off the phone with him.  During our interview – which appeared fairly typical (as far as book interviews go) I said something I will never forget.

“I live with deep pain every single day, missing Hunter more than I can describe.  And yet, this very pain is a gift from God.  It’s a gift because my pain reminds me that I’m not home yet.  It’s a constant reminder that heaven awaits me…Hunter is waiting…and so is Jesus.”

It’s true…this pain I carry in my heart each day is a gift.  The gift of what’s to come.  The gift of pain that inspires me to live fully each and every breath I’m given. What if this pain is an ever-present gift that God is using to hold me until HE – Himself holds me in His embrace? What if there’s healing in the pain?  What if I know a greater hope and embrace a deeper understanding of joy because of this broken heart?  What if?

Surely Mike didn’t fully comprehend what I said in those few moments on the phone with him.  I’m not even sure I can grasp what the Lord is speaking into my heart even now.

But, I do know that this revelation has brought me to my journal and to my knees.  And even though I don’t understand it all…I know that the gift of who HE is includes the pain that I’m carrying right now…and it is well with my soul.

“For you, O Lord, have delivered my soul from death, my eyes from tears, my feet from stumbling.  Psalm 116:8

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.

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.

“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!

What is Father’s Day by Dr. Joe Niamtu II

For many people Father’s Day is just another Hallmark Holiday where obligatory tribute is bestowed on the traditional head of the house, the analogue of Mother’s Day but six weeks later.

Father’s Day for most of us is a day to celebrate or remember our father and to celebrate the privilege of fatherhood and family.  There are many spins on this day, as some people never knew their father.  For some, it is a painful day as their relationship with their father or children was absent, lacking or painful.  I remember being in grade school and one of my buddies whose father passed away early, would feel very bad at school while the rest of us made coffee cups and paperweights for our fathers, he felt empty.

For the average family this holiday will probably include some cards, phone calls, unwanted socks and ties and a picnic.  It is largely a topical day that lacks the celebration of more prodigious holidays.

For me personally this is a happy and a sad day.  I am grateful that my father is 86 years old and still going strong.  I will certainly call him in Ohio and wish him a happy day while at the same time fight back emotions that this ritual is limited.  I think about the hard work ethic he instilled in me and the attribute to never quit, no matter what.  I think about how he is a member of the greatest generation and after coming home from WWII became the first child of an immigrant family to obtain a college degree.  I think about how hard he worked to raise four kids and what an example he set for me as a provider, protector, gentleman and humorist.

Being the father of two profoundly disabled young sons certainly adds other layers of emotion to Father’s Day.  Most men take for granted the lifelong dream of having a normal healthy son.  Every father, before achieving that status, had thoughts of raising a namesake, teaching him how to fish or hunt or throw a ball or do the big and little things in life.

It took me a while to find the girl of my dreams (I could write a great article about the importance of Mother’s Day) and my first son and namesake Joey was born in July of 2000.  The first 3 months of fatherhood seemed normal but Joey began having seizures and missing milestones.  He was diagnosed with severe cerebral palsy and we were told that he would never walk or talk or mentally develop.  He had numerous gastrointestinal problems and went through several operations in his first years of life.  Obviously, this was a huge emotional setback for all of us.  I can’t tell you how helpless you feel as a parent to know that your child will never grow up, never experience a normal life, never progress.

One of my primary concerns was who would take care of Joey if something were to happen to my wife or me.  I wanted to have another child for many reasons.  I wanted a family member who would always watch out for Joey so he would never end up in an institution.  I also wanted to be a father to a healthy child and do what fathers and children do.  We underwent significant genetic counseling, blood tests, etc. and were told that Joey’s condition was a genetic mutation in early pregnancy and that having another child with the same situation would be very rare.  I was elated when my wife April became pregnant again.  We underwent intense and high-risk neonatal care with amniocentesis and multiple ultrasounds.  We found out that our second child was a healthy boy and we named him Evan.  Evan would be my “savior”; he would be Joey’s protector in the future and the son that would experience the things that all fathers want to do.  Evan appeared normal and healthy at birth, but he did not roll over or crawl and began missing milestones.  The pattern was all too familiar; we had seen it with Joey.  Our worst fears soon came true; Evan had the same syndrome Joey had.  He began having severe G.I. problems and also required numerous operations.  April and I spent so many weeks in the hospital or emergency room that it became a way of life.  My wife is the strongest person I know and my sons are my soldiers.

So, the reality of my life is that I have 8 and 10-year-old sons that are tube fed, will always be in diapers, will never walk or talk and will always be 100% dependant.  It hurts to know this, it hurts to even write this, but it is my life.  I will never hear the word “daddy” and will never get to experience the “normal” joys of fatherhood.  I am a dedicated teacher and it hurts me that I cannot teach my sons about all the wonders of life and the human body and how things work.  It hurts me that I cannot watch them learn or prosper.  I will never see them make friends, go on a date, hit a homerun, go to the prom, or get a diploma.  The reality of this, times two, is emotionally incapacitating.  Any parent of a special needs child can relate.  Any parent with a special needs child can attest to the difficulty in falling asleep at night due to the fear of the future and the perseverance to get through tomorrow.  You worry about a lot of little things like who will carry on our family name, how will I move my sons when they get too heavy to lift?  In reality these are not important, only getting through today is important.

So what keeps us going?

First of all, I am happy that my boys are alive as there have been some very dark days in the ICU where I was not sure if they were going to make it.

There is also the reality that although our situation is bad, others have it much worse.  I’m blessed that I can afford to keep my children at home and don’t have to institutionalize them, as that loss would be insurmountable.  There are many families who cannot do this and there are many single mothers with special needs children that cannot afford ramps, handicapped vans, special equipment and around the clock nursing.  I am grateful that I can.

Our situation has also made us advocates for children and families with special needs.  We can help others and make the world better by spreading the word and being proactive for those who cannot speak for themselves.  Unfortunately, when state budgets get tight, the first things to go are social services and the most helpless get the short end of the stick.  I have always been a champion for the less fortunate, but I now have an even bigger reason to do so.

All parents love their children, but love for a special needs child transcends description.  These children are entirely reliant on their caregivers and this special bond of love is so hard to put into words, but you can see it and you live it.  My job is to make my sons laugh as much as possible and if I can get a smile before I leave for work and one when I get home, my day is complete.  Compared to normal families, we live in a world of “different”.  Our normal is different from your normal.  Playing my guitar and making my boys smile and laugh is the same as a normal parent watching their son score a goal or get an “A” on a test.

Another positive from this experience is the fact that it makes you reevaluate priorities in life.  It makes you never take anything for granted; it makes you not sweat the small stuff.  It has also given me tremendous resolve.

It makes me sad when I see parents screaming or spanking their kids, if they could just spend a day at my house, they would view their children different.  We take so much for granted, including having healthy children.

I would urge readers of this article to never take a single second for granted, as life is a short and fragile thing.  I would encourage all parents to savor every second and to kiss their children as much as possible.  I would also want readers to understand that there are many families out there that are barely making it and they need help and advocacy.

My good friend and Hall of Fame quarterback Jim Kelly had a special needs son who died at age eight.  His wife Jill told me that if she had to do it all over again, she would. Hunter completely changed her life and the lives of so many others.  In many ways, he made the world better.

So, Father’s Day is different at our house and for that matter, every day is different at our house.  There are enormous challenges but also enormous rewards.  Rewards that are deep, pure and cherished; much the same as a normal family, but yet very different.  If I can get a smile from Joey and Evan on Father’s Day, it will be a perfect holiday.