The Right Stuff

He was a welcome baby for us, although the world held back its welcome, giving him multiple birth defects to overcome.  They called it ‘Pierre Robin syndrome.’

Because the child is born with a smaller lower jaw, more than 90 percent of newborns are lost through choking, as the tongue does not have adequate space to rest, and slips back into the airway. 

He was transported to a regional hospital specializing in these types of birth defects, and underwent surgery at one day old to keep him alive.  A hole was drilled through his jaw and tongue, and a stainless steel retaining wire kept his tongue from sliding back until steroids and his sucking instinct help the chin grow. 

Chris did not like that wire, and at one month old, he wiggled it out, performing surgery on himself. 

He was not supposed to survive a day, a week, a month, six months. But he survived and thrived, for 42 years, outliving all his doctors. 

His birth defects were corrected, with surgery and drugs, except for his knee joints, which were absent at birth.  He could bend his legs somewhat, but it caused him to walk stiff-legged. 

Pessimistic doctors told us he would never ride a bicycle or drive a regular car, but Chris didn’t know that.  He rode his bike with his friends, swinging one leg out of the way while pedaling down with the other.  And he passed his unrestricted driving test and drove a normal car for 24 years. 

The word, ‘handicap’ was not in his vocabulary; he just couldn’t fully bend his legs. 

He was born with determination and will to accomplish whatever he wisely chose.  The surgeries and dealing with taunters about his walk or his short height, developed his incredible sense of humor and resilient personality.  He bounced back from everything. 

He joined the Boy Scouts.  He rose to the highest rank of Eagle Scout and stayed until adulthood, when he took over his troop as Scoutmaster.  His life was the Scouts and his boys in his troop responded eagerly.  He was invited to join and became a member of the Order of the Arrow, the Honor Society of scouting. 

His lack of knee joints strained his hips and he had to have both of them replaced. 

He was a big NY Giants fan, and spent his final day and night at his brother’s house for the Superbowl.  If there is a gleam of light in this story, he saw the Giants win that day.  He was happy. 

Chris had recently had surgery for a hernia, and the day after the big game he went to the doctor to get a clean bill of health.  It is a shame the doctor did not check his heart, but we can only guess if there were any advance signs to read. 

He was at home sitting at the kitchen table talking with his mother.  It is ironic that they were talking about final arrangements if one of them died.  In the next few minutes, his heart just stopped, who knows from what. 

Police, EMTs and doctors continuously sparked his heart many times, but it wouldn’t keep running. and at 4pm they finally gave up.

I am frozen in time, as if I could go back and do something if I sit very still.  I guess that is why people don’t talk much about their departed relatives; it is too painful.  I am advised that I will never get over this, and I agree, because I still cry every time I talk about him.  I know my tears are for me, yet I cannot control the emotion welling up within me. 

More than 500 of his friends and colleagues came to his memorial service.  His outreach was even more than I had known.  He was constantly calling people to see how they were doing, and if he could do anything for them; and he always did it.  He was always available for a friend. 

At the memorial service, ten and eleven year old Boy Scouts spoke out in front of the large crowd of how much they loved their Scoutmaster and what he meant to them.  I never realized that his troop was so large; more than 40, and nearly half that number reaching the Eagle rank due to Chris’ mentoring. 

I composed a letter to Chris to read at his memorial service.  The pastor read it for me, since there was no way I could hold it together for the reading. 

~~~~~

Dear Chris, 

When you first came into our lives there were some health problems — big problems.  You were not expected to live for very many days. 

I baptized you myself, just to be sure. 

You had surgery when you were just one day old; a stainless steel wire through your jaw holding your tongue from sliding into your airway. 

But each day came after the next and you survived. 

When time came to take you home, we discovered you had wiggled that uncomfortable wire completely out of your jaw. 

The doctor remarked, “He has a strong will.  One month old and he performed surgery on himself.” 

That will is your signature, Chris. 

Through all adversity, with your many surgeries and without knee joints, you not only survived, but thrived, developing your priceless sense of humor along the way. 

All your pessimistic doctors were the ones who passed away. 

You never grew as tall as your brother and I.  There were those in school who passed comments about your height and I witnessed a miracle when you marched up to them and said, “You hurt my feelings.” 

In that moment, they became tiny and you towered over them.  And the comments stopped. 

That is one of the many lessons I learned from you. 

Throughout your life we shared many experiences, although I wish we had been able to share more. 

I remember when, as a teenager, you asked me how I always knew what you were up to, and looked surprised when I told you to believe I was your age once, very long ago. 

I remember the one-mile runs on the Long Beach boardwalk and your victory wave to the cheering crowd as you crossed the finish line. 

I remember a doctor saying to me that the most difficult time in your life would be when your friends are riding bicycles when you cannot.  But you found a way to pedal and swing your other leg out of the way. 

You learned to ride because you didn’t know you couldn’t. 

I remember the motor scooter you bought and rode everywhere, even to the deli across the street. 

I remember the school insisting that you learn to drive in a hand-controlled car, but we found a way, and you passed the test for an unrestricted driver’s license.

The term ‘handicapped’ was never in your vocabulary. 

I remember the expression on your face when a doctor told you that your long-promised knee joint implants were an impossible surgery.  After the initial disappointment, you just picked up and went on with your life. 

To every challenge, you responded with your priceless sense of humor and went on with your signature will. 

I remember your visit to us in Texas in September 2001; a fateful time when we spent four days in front of the TV, witnessing, live, the horror of the World Trade Center attacks and the aftermath.  That experience bonded us forever.

It was not enough for you to be just a Boy Scout.  Rank by rank, you drove yourself higher to Eagle Scout, then Scoutmaster, because you loved it so.  Your best and happiest times were at Scout camp. 

Very little stopped you.  I remember driving up to Onteora Scout Reservation to pick you up from Boy Scout camp because we received a call that you had fallen down ‘a small mountain’ and had broken your leg.  Even on the ride home you were upbeat, and returned next year. 

You have always been a good son, Chris; a good brother, a good uncle, and a good friend; a family member that can always be counted on.  I will miss your caring, your sense of humor, and your calls to check in on me. 

To me, you are not gone. To me, you are nearby, just out of sight, perhaps around the corner. I will not say goodbye or let you go. 

I have loved you for 42 years, and I won’t stop now.  You will live in my heart forever. 

I only wish I had you for one more day. 

Love,

Dad

~~~~~

Three months prior, in November of 2011, I came close to suddenly dying as Chris did.  My repaired heart symbolizes to me a new life and a new beginning.  For 42 years I was proud of my son Chris, as I am of all my children.  In my new life I want to make Chris proud of me. 

Chris had nothing unresolved at the end of his life. He accomplished more than people thought he could;  he was good to his family and friends and showed his love to us all; he passed quickly, without suffering, with his mother by his side; and he saw the NY Giants win the Super Bowl.  He died happy.  We should all be so lucky. 

His troop will distribute his ashes over the Orchard lake at his beloved Onteora Scout Reservation during their next summer stay. 

My favorite quote applies well to Chris: 

“People may forget what you said or did, but they will always remember how you made them feel.” 

 Boy Scout Leader

~~~~~

The Scoutmaster by Edgar Guest

There isn’t any pay for you, you serve without reward, The boys who tramp the fields with you but little could afford. And yet your pay is richer far than those who toil for gold, For in a dozen different ways your service shall be told. 

You’ll read it in the faces of a Troop of growing boys, You’ll read it in the pleasure of a dozen manly joys, And down the distant future you will surely read it then, Emblazoned thru the service of a band of loyal men. 

Five years of willing labor and of brothering a Troop, Five years of trudging highways, with the Indian cry and whoop, Five years of campfires burning, not alone for pleasure’s sake, But the future generation which the boys are soon to make.

They have no gold to give you, but when age comes on to you They’ll give you back the splendid things you taught them how to do They’ll give you rich contentment and a thrill of honest pride And you’ll see the nation prosper, and you’ll all be satisfied.