A Summer Wind

A Summer Wind

If I can stop one heart from breaking,

I shall not live in vain.

If I can ease one life the aching,

Or cool one pain,

Or help one fainting robin

Unto his nest again,

I shall not live in vain.

Emily Dickinson

When summer finally sighs and gives way to autumn,  the first cool day is like the seconds of silence following the cacophony of a dozen children as they leave the house and slam the door shut.  The void is palpable.  It is like a great sweeping summer wind that gusts for a moment and then moves on to another far off place.  It sometimes in these vacant spaces that we find purpose and meaning.

I was leaving a meeting in the City earlier this month – having just given a successful speech to a large audience of prospects. I was feeling quite full of myself wondering why I had never decided to run for public office, publish my memoirs or perhaps teach literature at Harvard or Princeton.  As I basked in the solar flare of my ego, I reached into my pocket to remove the notes from my speech and pulled out instead Mikey Czech’s prayer card.  I had carried this card in my suit since last September as a reminder – of Mikey and so many others who have suffered losses in the last year.  I was flooded with humility, appreciation and sadness that washed over the sand of my self-adulation leaving only the clean stones of gratitude and hope in its wake. 

I think about Mikey Czech often. I carry that laminated card in my only power suit as a reminder that my personal relevance is directly proportionate to the percentage of myself I give to others.  The Czech Family Foundation’s guiding principle is a tenet of the late Mother Teresa, “ Let No One Come To You Without Leaving Better and Happier.”

Over the last year, many of our lives have changed in ways that most of us could not have fathomed.  The unthinkable happened.  Life occurred while we were busy making plans and storms swept in and rerouted the course of our dreams and the foundations on which we believed were built on bedrock.  While the anxiety of a lost job or unstable finances can begin to prey on one’s sense of security, we only need to see that handsome smiling face of a ten year old boy who fought a Herculean battle against brain cancer to remember that we have miles to go before we sleep. 

Mikey Czech turned out to be a fighter.  Being a baseball coach and knowing how much Mikey loved the game, I watched him during his final at bat as he fouled off life’s highest and hardest pitches fighting a cancer that would ultimate take him from us too soon.  However, he became a catalyst for a generation of children who suddenly understood the meaning of life’s fragility, community and the value of finding a cure for a disease that robs over 150 families each year.  With a disease like this there are firsts that no parent would ever hope to have to endure.  Jennifer, Sydney and Steve have just weathered their year of firsts without Mikey.  Yet they have chosen to honor him by assembling a first ever all-star team. To quote Steve, “We believe we have the best neuro-oncologists , the best neuro-scientific researchers, the best radiation oncologists and the best neuro-pathologists on the planet.  As such, we are going to work tirelessly to make certain that they have the requisite resources to accomplish our collective goal of curing this disease. “ 

Other families in our community have also been touched by tragedy and loss over the last 12 months and I often wonder who comforts the grieving when everyone goes home and the crowd of support thins to empty space and memories.  It’s then perhaps that the cool Indian summer breeze sweeps in to dull the ache of a lost loved one.  I like to think it is Mikey’s spirit running by catching a ball he has thrown to himself in the air.  Mostly, people’s heartaches are assuaged by others.  In life, there are no burning bushes, only people committed to serve a higher purpose and in doing so, become catalysts for great things. 

On Monday, June 8, 2009, Saxe Middle School hosted a tree planting & bench dedication ceremony planting a magnificent maple tree, donated by Gregg’s Garden & Landscaping of New Canaan. It  was planted in memory of Mikey and will now shade a bench donated by Jennifer, Sydney and Steve.  The tree and bench are located on the front lawn at Saxe Middle School at the intersection of South Avenue and Farm Road. Of all the Mikey tributes the Czechs attended, this one was the hardest on the family as 300 of Mikey’s classmates formed a circle around Jennifer, Steve, the tree, the bench.  The message was clear – we will never forget. 

The grief we all feel for families who experience these losses is overwhelming and we all digest its bitterness in different ways.  For Steve, Jennifer and Sidney, there is a plan and there is a purpose. Already, important advances have been achieved in the identification and behaviorial profile of the rogue cells. 

A “glioma” is a type of cancer that starts in the brain or spine. It is called a glioma because it arises from glial cells. Recently, pediatric cancer researchers Antonio and Anna Iavarones discovered that malignant glioma cells in human patients “hijack” and exploit molecular pathways that function in neural stems cells during normal (healthy) brain development. The therapeutic implication of this work suggests that certain therapies can be developed to focus on restoring normal activity in malignant glioma cells to STOP tumor growth. A cancerous tumor, by itself, does not kill but the spreading and metastasizing of the cancerous tumor cells is what ultimate leads to death. We now know that if the impacted gene can be restored after being hijacked by a malignant glioma, then the malignant glioma can be prevented from spreading, prevented from invading the brain; and prevented from causing death.

To quote an article from the Marquette Alumni, “Now Czech applies his entrepreneurial energy toward finding a cure for rare pediatric brain cancers. He and his wife, Jennifer, created the Mikey Czech Foundation with a goal of raising $6 million to create a world-leading neuro-oncology research laboratory in New York City. Because Mikey’s tumor type affects only 150 kids a year and can’t be biopsied, research for a cure is virtually non-existent. Czech is committed to changing that. After all, he made a promise to his son. ‘The next time I see him, whenever that is, I want to be able to look him in the eye and tell him we eradicated this hideous disease,’ he says. “ 

Meanwhile, a community carries Mikey on its shoulders  and carries on a mission. We started the summer getting buzz cuts for Mikey, The fundraiser netted $1500 and saved some parents who shall go unnamed, countless dollars in anti-lice treatments.  I considered the buzz cut myself but was afraid someone with a Hubble telescope would start studying my head.

It’s been a year of firsts for the Czechs and as we often discover as parents, firsts yield to seconds, thirds and an endlessly taken for granted road of routine.   The Czechs have charted a new path as a family and have asked us to come along. Stephen Covey once said, “ We are not human beings on a spiritual journey. We are spiritual beings on a human journey.” Our spirituality is hidden in each of us like a candle under a bushel basket.  In some, a light shines bright for all to see.  In a rare few, its brilliance serves as a lighthouse to others who might be foundering in rough seas. We all have the capacity to shine in a dark, solemn world. 

It is little boys and girls who remind us of life’s simple pleasures – about earnestness, wonder, magic, loyalty, fear and hope. Every child is born with the same potential and it is our duty as universal parents to do everything within our power to help each child realize their full potential as spiritual beings.  This means reaching out to the terrified in Darfur, the disenfranchised in our own communities and that child, lying terminally ill in a pediatric cancer ward with a rare brain stem cancer – a cancer we can stop dead in its tracks.  Mikey would have had no qualms about that one.  “ Go ahead and hit it with a bean-ball, Mr. Turpin.” 

The Czech Foundation will host a dash and walk-a-thon on September 20th, a family tennis tournament on October 10th and a Mom’s for Mikey Comedy night on November 13th. The Foundation is building momentum as are the very capable legion of volunteers and board members who support the Czech’s efforts.

The foundation’s address is : The Mikey Czech Foundation, Inc., 927 Silvermine Road, New Canaan, CT 06840.  A website providing information and the opportunity to make a donation can be found  www.mikeyczech.org.

As the baseball gloves, lacrosse sticks and talismen of summer are stacked and tucked away assuming there will always be next season, autumn floats toward us on an Indian summer wind.  Perhaps we can transform Mikey’s memory to a permanent wind of change marking not just the change of a season but the changing and saving of thousands of lives – including our own.

Mikey’s Song

imagesLet children walk with Nature, let them see the beautiful blendings and communions of death and life, their joyous inseparable unity, as taught in woods and meadows, plains and mountains and streams of our blessed star, and they will learn that death is stingless indeed, and as beautiful as life.  John Muir

It was a gorgeous Indian summer day when I heard the news that Mikey Czech had passed away.  It was the kind of day Mikey Czech would have loved – warm, breezy and perfect for New England Patriots football. Mikey was 11 years old and had been battling a brain tumor for months with extraordinary courage and resolve.  Over the course of the spring and summer of 2008, Mikey had become his generation’s Johnny Gunther Jr. demonstrating with every step, breath, treatment, and remarkable milestone, that the size of one’s body has no relation to the size of one’s heart.

I was 14 years old when I read the book, Death Be Not Proud, by John Gunther Sr, who chronicled the battles of his son Johnny Gunther Jr., as he valiantly fought a brain tumor.  The memory of this best selling novel written in 1949 remains with me to this day and changed my perspective on how each of us can achieve meaning in our fragile lives.  Not unlike John Gunther Sr, Mikey’s dad Steve Czech chose to chronicle his son’s battle via emails to family and friends giving and drawing strength from the community and the humanity that seemed to arise out of every “How’s Mikey” moment.

I followed young Master Czech’s story with keen interest and smiled as Mikey became a beloved accidental celebrity. A broad audience of concerned friends, family and acquaintances regularly gathered inspiration from his progress following treatments and were amazed at the extent of outreach, well wishes, support and prayers that he received from the farthest reaches of the world, from celebrities, athletes and dignitaries. Mikey became a surrogate son to many of us who followed his brave journey. At 11 years old, he was near the age of my own boys and it was only by one degree of separation that I realized it could be me sitting in a pediatric chemotherapy wing waiting for my child.

I watched Mikey fight hard.  He downplayed with his parents and sister Sydney the disabling effects of his chemotherapy and radiation.  He insisted on walking the several blocks to and from the hospital where he was receiving his treatments.  He dreamed of getting back to play baseball and football with his friends.  He threw out the first pitch, kicking off the 2008 New Canaan Baseball season, returning to play and graft back easily on to the huge oak of friends that shaded him and gave him strength.  I was so pleased to see kids in the community aware and rallying unconditionally in their support for Mikey –writing letters, sending cards, creating a massive banner and wearing Stay Strong wrist bands.

Throughout this long journey across a pitched black ocean, the Czech’s family ship kept taking on new crew, people wanting to lend a hand, offer a hug or just take a turn on the helm to let the family grab some shut-eye.  Mikey became every man’s child which is what every church, synagogue, temple or mosque strives to inculcate into its congregations – – that every child is our child, that no man is an island and that we are given the capacity and emotional bandwidth at our creation to care for everyone.

For sudden the worst turns the best to the brave, 
The black minute’s at end, 
And the elements’ rage, the friend-voices that rave, 
Shall dwindle, shall blend, 
Shall change, shall become first a peace out of pain, 
Then a light, then thy breast, 
O thou soul of my soul! I shall clasp thee again, 
And with God be the rest. 

Robert Browning

Mikey’s passing is devastating – – for his family, his friends and his community.  As a father of three children, neighbor and fellow member of the Czech’s community, I find myself unable to even comprehend the magnitude of the family’s loss.  I arise each day, first and foremost, a father who adores, loves, shapes and mends his children.  I have come to believe the true definition of joy is watching someone you love obtain happiness and that despair is the inability to trade places with that person you love to ameliorate their pain. It’s times like these that we look to Heaven for answers and we ask questions  – lot’s of questions.  Most often, we simply ask why?  However, if Mikey were here, I am certain he would be pleased that he brought people together and he would want us to celebrate his life.  He would probably explain that he has just run ahead of us into that deep mysterious wood around the trail’s curve.  He’s checking it out and he’s laughing as he shouts back, “ it’s beautiful.  I’ll just wait for you guys to catch up.  Bring your baseball glove!”

Mikey’s Song

You’re just a bit ahead of me

Exploring all there is to see

I can’t be sad to see you run

It’s who you are.  You are my son

 

It’s better when you’re by my sleeve

But I accept that you must leave

I’m supposed to take the lead

To clothe, to love, to teach, to feed

 

But you so full of life and spirit

You love the trail and never fear it

You made me more a man each day

Watching the way you lived and played

 

But now I’m in a shadowed place

I’ve lost my way, can’t see your face

The fear sets in, this path is wrong

And then I hear your happy song

 

It’s rushes waving in a breeze

The way the snow rests soft on trees

A single star aloft in space

The wind’s caress across my face

 

Our hands can’t touch but you are there

I feel your breath and smell your hair

Your song tells me you’ll be all right

Until the day we reunite

Mikey’s Song, M. Turpin