Wednesday, September 26, 2012

Eulogy For Jack Bartosz

Today's blog post was supposed to be about the last week of amazing fundraising successes, voting contests ending soon, buses parking on chests and all that but then I read this.  I became aware of the Bartosz family, and Jack in particular, near the end of August.  Actually I believe it was the day before Jack died (that happens more and more these days).  Sarah's eulogy for her son is eloquent, touching, and inspired.
"A Mother's Tribute
I have written about Jack and our family for seven years on this site, recapping the highs and lows of this long and painful journey. I had hoped to never, ever have to write a eulogy to my wonderful son; unfortunately, the time came and as hard as it was, it was something I needed to do. 
For those of you unable to join us for the celebration on Saturday evening, John and I both spoke about Jack. Though it was extraordinarily difficult, we had an extraordinary son who gave us the courage, strength, and love to accomplish the task. John's words were paired with clips from the wonderful videos and movies he has made of the kids throughout the years. I had the daunting task of putting into prose my love for my son and I share the result with all of you below.
There are truly no words adequate enough, no adjectives extraordinary enough to describe my beautiful boy. I could write volumes about how he changed us and about the bright light that was and will always be Jack. What I am grateful for is that the bright light continues to shine in and on all of us, most especially glowing in the eyes and heart of our amazing Annie who shares Jack's light and will forever keep it glowing in her own good works and loving heart. A prouder mother there can never be.

A Mother's Tribute
It has been said that it takes a village to raise a child.  But as I look at all of you here today and think of the countless others who wish they could be here, I know that just one child can raise an entire village.  A village of hope, a village of inspiration, a village of courage, strength, determination, and, most importantly, a village of love. 
Jack lived with a faith that anything and everything were possible.  He lived to be ordinary under extraordinary circumstances.  He longed to be “plain” – a term he started using when he was just a little boy of four in the first phases of treatment.  To him, plain meant no IVs, tubes, wires, or other annoying medical devices and pieces of equipment.  Jack longed to be a plain old average kid, but never complained when he went through phases of being anything but plain.  But regardless of the state of Jack’s disease over the last seven years, plain and average are words no one has ever or will ever use to describe Jack – a boy with a big smile and an even bigger heart.
Jack prided himself on being happy and he loved telling anyone and everyone that he was happy and that they should be happy too.  A story was recently recounted to me that during one of the average morning carpool trips to school just this spring, there was an unusual silence among the four kids in the car until Jack piped up with one simple statement, “I’m happy.”  No specific reason was given because Jack never needed any specifics to express his pure happiness for life, going to school, seeing his friends, feeling good, and the other average daily activities and outlooks most of us take for granted.
For John, Annie and me, the most momentous example of Jack’s declaration of happiness came in January 2011 after a devastating scan trip to New York where we learned Jack’s cancer had again crept back unexpectedly and was again threatening his body and his life.  The four of us arrived back in Wisconsin knowing that high-dose chemo would begin again, Jack would miss school, friends, birthday parties and activities, and our lives would be measured in trips to the hospital and nights of inpatient isolation.  As we drove home from the airport, John, Annie and I were all silently crying, the tears flowing in steady streams.  None of us could speak.  Jack looked over at Annie sitting next to him in the back seat and said, “Annie, why are you crying?” as if perplexed by her behavior. 
Annie looked over at him baffled and said, “Jack, your cancer is back. You have to get chemo. You’ll have to be in the hospital. You can’t come to school. You are going to feel sick again. Why aren’t YOU crying?”  We were all silent waiting for his response.  And then it came and changed us all.  “Because I’m happy. You need to be happy. Everyone should just be happy. When you are sad, be happy. And when you are happy, be glad.” 
John and I exchanged incredulous looks, wiped our eyes, and said OK . . . if this child who knows what he is facing can simply be happy in this moment and in this journey, then we need to be happy too.  Jack told us what to do in the face of a crisis and told us how to live our lives not looking at what is going wrong, but looking at all that is going right.  Now this isn’t to say that we haven’t shed oceans of tears since then, but what I can tell you is that we tried very hard from that day forward not to cry in front of Jack.  We did our best to stay positive and be happy. And we have done our best to embrace Jack’s mantra of happiness every day, even in the days since his physical presence left our midst.
Last Christmas with the entire Bartosz and Detling families gathered around our dining room table, we pulled out the conversation stones Jack and Annie had made for us the year before.  After answering questions about our favorite foods, what type of super power we wish we had, and what person from history we would most like to meet, the final question was posed . . . “Describe your ideal day.” As we all thought of what would create the perfect day, answers of pampering at a spa, golf at Augusta National, shopping sprees, a tranquil beach were all offered up until the last person to answer was Jack.  And his little voice simply said, “Any day I don’t have to go to the hospital can be the best day.”  Scratch the spa, the golf, the shopping and the beach . . . Jack was right, any day and EVERY day can be the best days.
But even in the hospital, Jack was out in the halls whenever possible looking to make new friends, join in a video game, organize Nerf gun or silly string battles, or invite his friends up to hang out, make a movie, or eat pizza.  I watched Jack make friends with most EVERYONE in EVERY state and hospital we visited.  Over the years he taught other kids how to swallow their pills, take their medications, get shots without crying, join in a Bingo game or group activity, and make the most of feeling good, even when stuck in a hospital.  Every hospital staff person in every state knew to find Jack if there was a party that needed to get started. 
He created an Olympic mountain out of balloons and paper mache, led the Mardi Gras parade while wearing the chicken hat he fashioned out of a bucket, Styrofoam, orange paint and feathers, filmed videos and television interviews, gathered nurses and doctors to play games, laughed with the clowns, rode his scooter, made every craft project available, participated in cooking classes, pet therapy, drama club, yoga, dance therapy, tae kwon do, and EVERY OTHER ACTIVITY that came along . . . all while tethered to an IV pole and wearing his trademark grin. 
Jack squeezed more living into his 10 years, 10 months and 23 days than most people do in decades. He lived without hesitation or reservation. When asked on a school survey what his greatest fears were, Jack responded, “I don’t have any fears.”  This was true in so many ways.  Though he was cautious and safe, he threw himself at life and living with great abandon and without worry about looking foolish or too enthusiastic. 
Just last week while Annie and I were running errands, a song came on in the car and Annie sighed with smile.  She told me that the song reminded her of Jack.  She went on to tell me that on the ONE day Jack was at school this spring in between chemo and hospital trips to participate in roller skating in gym, he eagerly laced up his skates but had neither the stamina nor muscle tone to actively skate. But in true Jack fashion, he made the best of it and slowly inched his way to the middle of the gym floor.  And when a song came on that he knew the lyrics to, he stopped in the middle of the gym floor, raised his arms, sang at the top of his lungs and danced . . . skates and all as the other kids kept skating in a circle around him.  He wasn’t embarrassed, he wasn’t shy, he wasn’t intimidated or nervous, he was just plain happy and he wanted to share that happiness and enthusiasm with everyone. 
Jack was a believer – he believed in himself, he believed he would beat cancer and grow up to be a surgeon, he believed in the goodness of others, he believed in hope, he believed that laughter truly was the best medicine, and he believed whole-heartedly that all things were possible.  The list could go on and on, but his pure, innocent, genuine belief changed those who loved him in so many ways.  “People, you gotta believe” was a phrase he uttered more than once.  Whether it was during the Packers Super Bowl appearance, watching the Polar Express and talking about Santa, learning about the next treatment or trial we were embarking on, or just waking up with the faith that today could be the best day ever, Jack believed and has made believers out of all of us. 
Going to school was something Jack adored always.  He prided himself on being a good student and kept up with his studies regardless of being inpatient or in another state. I am quite certain that Jack taught his beloved teachers as much as they taught him.  As a protective, worried mom, there are no words adequate to thank them for helping us to make sure he always felt included and valued.  Though he maintained straight A’s, there is no quantitative way to measure the qualitative, heartfelt opportunities his teachers provided to him with their dedication, caring, commitment and love.  I know a part of Jack’s heart will forever remain in the halls of Swallow School.
In addition to being a good student, Jack also prided himself on being a good friend – new friend or best friend, celebrated athlete or trusted caregiver, young in age or young at heart, playground pal or hospital comrade, Jack embraced everyone in the most honest and genuine of ways.  He didn’t care about what people were on the outside, he cared about who a person was on the inside. Jack gave of his love and friendship unconditionally and was happiest just being himself.
And Jack, in turn, was blessed with the most wonderful friends who only saw him for the cheese-loving, laugh-making, orange-wearing, life-embracing boy that he was.  With hair or without, in the hospital or at home, with IVs or without, none of that ever mattered because Jack’s true friends only saw him as their buddy with the big smile and the grand sense of humor. 
To Jack’s friends, from the bottom of my heart, I thank you.  We all thank you for embracing him with your friendship, love, and kindness just as he embraced you with his.  I hope that Jack’s bravery and joy in the face of insurmountable odds will empower you to keep your chin up, embrace life’s challenges, and keep a smile on your face.  Always believe you will succeed. Keep focused on the ultimate goal you are trying to reach. Forever press on and fight the GOOD fight. Know that Jack is cheering for you and know that his grateful family is always cheering for you too. You all hold a special place in our hearts as I hope Jack will forever hold a special place in your heart.  Feel his love and happiness today and always.
I hope everyone here and everyone he touched will always feel Jack’s love and happiness.  And I thoughtfully ask that you help us share Jack’s love with Tommy, the little brother Jack named and couldn’t wait to teach about all the important things in life, so that Tommy, too, can know what an amazing brother he has.  During Jack’s last trip to Northern Wisconsin in July to stay at Gramma and PopPop’s, Jack was able to visit the local bait shop with a $25 gift certificate he won from a kids fishing contest the year before.  Even with pain causing him to limp, he enthusiastically set out to load his tackle box with the coolest of bait.  With a basket full of colorful new jigs and lures, Jack had money left to spend when he spotted a stuffed turtle.  Jack was concerned that the stuffed animal would put him 25 cents over his limit and asked PopPop if that was OK. PopPop happily said he’d spot him the quarter but asked him if he really wanted to spend money on another stuffie. 
Jack quickly exclaimed, “Oh PopPop, this isn’t for me, it’s for Tommy. I’m going to sleep with the turtle and then Annie can sleep with the turtle and then we’ll give it Tommy so he can feel the love.”  Needless to say, the turtle was purchased and awaits Tommy’s arrival and will remain a symbol of Jack’s love for all of us for the rest of our lives. And to Jack, our most thoughtful big brother, I believe with all my heart that Tommy will know, will feel, and will cherish your love.
Just three days before he left us, Jack provided us with some of his final words of wisdom that will resonate in my head and my heart forever, “People know me for my happiness. I don’t want people to think of me for sadness.”  You are right Jack, we will never think of you for sadness.  The tears we cry today are tears of joy for the happiness that you shared, the love that you gave, and the belief that you inspired. 
We always maintained hope that Jack would survive, but we came to understand that the quality and meaning of human life are not measured in years – they are measured in moments.  Moments of happiness in every day in the simplest of ways.  Moments of honesty and words of wisdom:  be happy, feel the love, and just believe.
Thank you all for being a part of Jack’s great village.  Your support of Jack and our family have encouraged us and saved us.  Tomorrow, September 23, marks the day seven years ago that our lives changed forever when we heard the words, “Jack has cancer.”  It has taken this great village to support Jack as well as John, Annie and I and our families through this darkness.
For those of you who know my love of quotes, I leave you with this one. And though the author is unknown, I know the inspiration for such thoughtful words was someone like my Jack.
“There are some who bring a light so great into this world that even after they have gone the light remains.” 
When a star dies in the heavens, its light continues to shine for millions of years.  I trust that Jack’s great light will shine on us all forever, bring us out of the darkness, give us many reasons to be happy, help us to feel the love, allow us to forever believe, and remind us that we must always back Jack.
I love you, Jack. Now and forever."

I dream of a time when no parent will need to be so inspired.

The "I Back Jack Foundation" has a Facebook Site
and their Caringbridge site is

Monday, September 17, 2012

The Week Of Chaos!

As Childhood Cancer Awareness Month continues, we are having another typical week in the life of!  Lot's of stuff going on.

1) Groupon Grassroots:  Recently, we were awarded a Groupon Grassroots Campaign during which $10 donations are taken to help fund one Lunch Bunch meal for the families being treated up on the 7th floor of Children's Hospital of Richmond  (This is our meal program for which we have teamed up with Connor's Heroes Foundation). The campaign is live through Sept. 23rd and is taking $10 donations right now. The "tipping point" is $300. It's difficult to imagine that we wouldn't reach that amount but if somehow we don't, then the funds raised up to that point are not distributed and no one's credit card will be charged. If nothing else, we get exposure and experience.

If  the tipping point is reached, which it will, then the Lunch Bunch is guaranteed one more event.  We hope we end up with several.

2) The Amazing Raise: This is an exciting, 36-hour fundraising event being hosted by The Community Foundation/  It begins Wednesday, Sept. 19 at 6:00AM (we'll post the link as soon as we possibly can after it goes live at 6:00:01AM) and ends the next day at 6:00PM.  There are MANY creative ways to win matching funds and CJSTUF will be aiming for three specifically.

The first is the 50/50 Early Bird Match.  The first 15 organizations (and there are dozens) that receive 50 unique donations of $50 will receive $2,500 matching grants from the Community Foundation (That's FIVE families helped).  So please plan to wake up early and help us capitalize on this opportunity.

The second is called "Midnight Madness."  Simply put, the donation (of at least $25) that comes in closest to midnight on Wed night will receive an extra $1,000 (2 families).  We will be having a wildly fun karaoke party at ComedySportz in Richmond starting at 10:00PM and when midnight approaches, we will countdown to zero and get everyone to push the "send" buttons as close to 12:00 as possible.  YOU are invited.  Come stay up late on a school night.  You know you've always wanted to!

The third focal area is the "Lunch Break" on Thursday 12:00PM-2:00PM.  The organization that receives the most unique donations of $25 or more within that time frame will win $1,000 (2 more families helped).  We will be lunching at Pepicelli's Pizza in Ashland during that time and any donations that come in throughout the Lunch Break will be applied to the Lunch Bunch.  (Pepi's, by the way, just happens to be CJSTUF's Business Of The Month for September; another great reason to come in!)

There is a fourth area that we think we could win and that's the Long Distance Donor Award.  The donation that comes in from the farthest point on the planet (determined by billing address of the card used) will earn the non-profit $1,000 (2 MORE families)  The Network is pretty widespread and if the right people donate (all you in Europe,  New Zealand, Australia, Japan, Malaysia, Africa, China, Korea, etc... know who you are!), we could win that one as well.

Last year was our first experience with the Amazing Raise and with very little effort, you helped us raise just over $1,000 (2 families).  This year, if we win only one of the contests at which we're aiming, we'll more than double that.

3 and 4) Rachel still continues to hold her own in the two voting-based contests.  The Eagle Rare Life contest has her at 4732 at this writing and we have no way of knowing how well she's doing in the Lady Godiva Program.  Just keep voting every 24 hours and we'll let you know something when we do.

5) The "Every Day Is A Bonus" Fall Art Auction is coming up on Friday October 19th.  We've already started receiving reservations and artist donations, some of which are pretty amazing.  There will be live and silent auctions featuring paintings, photographs, children's art, stained glass art, arts services and an interactive experience where live artists will be creating pieces right there in front of everyone. And don't forget the chocolate dessert bar! If you'd like to reserve your place, click here.

6) Did we mention that Pepicelli's Pizza is the Business Of The Month for September?  We won't have a BOTM for October due to the Art Auction.  We'll let you know about Nov. and Dec. as we get closer.  This post is long enough already!

We'll rest in January.

Sunday, September 2, 2012

Every Vote Counts!

As you may have heard by now, Rachel has been named a candidate in two voting contests. Each one could help CJSTUF earn funds that we can use towards our mission. 

You don't have to register your email address or log in. Just click to vote every 24 hours.

Contest #1: Eagle Rare Award. Rachel was a runner up for this award last year and CJSTUF received $2000 that we are using for the Lunch Bunch program.  We could earn up to $30,000 for CJSTUF this year if we win the big prize! Rachel is currently in 5th place. Voting ends January 2013.  

Lady Godiva logo Contest #2: Rachel was one of nine women selected from over 1000 entries for the fall round of voting in the Lady Godiva Program. If she wins this round, CJSTUF gets $1000 and a chance to earn up to $10K in the final round. Voting ends September 26. 

We know that we have a wonderful Network. That is how CJSTUF came to be in the first place. In the last three years, our network has continued to grow and we appreciate all of the support.  Voting in these contests helps us achieve our mission and it only takes a few seconds of your time.  If you can spare a few more seconds, please share this blog in an email or on social media with your friends. Every vote counts!