Joe Sikorra - Defying Gravity: How Choosing Joy Lifted My Family from Death to Life

DEFYING GRAVITY

JOE SIKORRA

How Choosing Joy Lifted
My Family from
Death to Life

IGNATIUS PRESS SAN FRANCISCO

Unless otherwise indicated, Scripture quotations are from the Revised Standard Version of the BibleSecond Catholic Edition (Ignatius Edition), Copyright 2006 National Council of the Churches of Christ in the United States of America. Used by permission. All rights reserved worldwide.

Cover photo courtesy of author

Cover design by Enrique J. Aguilar Pinto

2018 by Ignatius Press, San Francisco
All rights reserved
ISBN 978-1-62164-145-2 (PB)
ISBN 978-1-64229-030-1 (EB)
Library of Congress Control Number 2017941950
Printed in the United States of America

To Dr. Gerald Berkman, the boys pediatrician, who made himself available to us day and night from the beginning; Bobby Moin, who provided care to our boys with such a generous heart we could never repay him; and our village, which has made this journey with us

It is said that what doesnt kill you makes you stronger. I believe it is also true that what can and will kill you can make you stronger. My beautiful sons are living proof of this statement.

In 1998, when our older son, John, turned seven, my wife, Lori, and I shared a parents worst nightmare: Your son has a neurological disease. It is fatal, the specialist said.

I dont remember everything he said. For that matter, I dont remember the doctor or anything else of substance about the meeting. Fatal is all I remember. It was as if all the oxygen and the warmth had been sucked out of the room. Lori and I couldnt think. We couldnt breathe. Shocked, we collapsed into the sterile chairs in the doctors office. They offered no relief from the weight that had been dropped on us. Emotion crept up from our innermost being, and we gave way to a torrent of tears. We tried to gulp in air through our sobs as the doctors explained the horrible progression of the disease: blindness, seizures, feeding tubes, loss of motor and cognitive function, and Johns death in his late teens or early twenties. The common name for this most uncommon of diseases is juvenile Batten disease.

Our hearts had been dealt an unimaginable blow from which I could not imagine recovery. It couldnt be worse. Right?

Wrong. Six months later we were told that our other son, Ben, four years old, suffered from the same debilitating disease. Both of our children would spend their entire short lives increasingly burdened by the diseases ravaging effects. We had no idea how we could find a path through this dark valley, knowing it could lead only to death. If hope is believing in the good one cant yet see, what hope could we find, given the bleak picture the doctors painted for us? The doctors said much but gave nothing. How could we watch our children, flesh of our flesh and bone of our bone, dwindle and die and not die ourselves?

How tragic. How awful, one might say. Yes, it certainly seemed that way to us. But we discovered that overflowing love can coexist with heartbreak and abundant joy can live side by side with suffering. These apparent contradictions can be experienced at the same time within the same family.

Impossible, one might think. But it is possible for a heart transformed and molded by God.

Lori and I were raised in faith-filled homes. We believed in a kind, loving God. We paid homage to Him every Sunday. But the faith necessary to see and to experience the beauty in the road that lay ahead of us would need to be forged in the fire of adversity. And this adversity, in the form of our childrens disease, was the gift we were given.

Gift?

Yes, a most precious gift. I wouldnt trade my life experience, my family, for the world.

Of course, from day one we begged God to heal our boys. If I could have given my life for theirs, I would have. But God didnt allow me to trade places with them. He gave me not the opportunity to die for them but the chance to live for them. How could I live for them? By accepting Christs death on the Cross for me and my family and by letting go of my old self and putting on fullness of life in Christ.

Although my familys chief struggle has been living with a terminal disease, this story is not about death and dying. Rather, it is a story of life and living. It is an adventure story, in which hardship meets joy, love embraces tears, and laughter rises amid despair.

Families and marriages, understandably, often crumble under the weight of crushing circumstances. To avoid that fate, my family needed to learn how to face the battles of each day by choosing courage in face of fear, faith in the thick of doubt, hope in the pit of despair, and love when we felt ready to give up. We didnt always win. Sometimes fear, dejection, and depression ruled the day. Knowing that the battle would be long and victory would never be assured, discouragement sometimes got the better of us. Yet our lives continued to be increasingly enriched. Does that seem impossible? Well, as the Good Book says, With God all things are possible (Mt 19:26).

Saint Paul the Apostle, in his Letter to the Philippians (chapter 4), says that he had learned to be content no matter his circumstances; that he had found the recipe for being happy. Happiness is not found by avoiding struggles, he discovered, but by embracing them and letting God do amazing things with us. That has been our experience; that has been our story.

In 1991, when our first son was born, Lori and I had been married for four years and were living in Santa Monica, California. Our lives were idyllic. I was living out my dream of becoming an actor, and Lori had a good job as a nurse. Our small studio, built in the i920s and sporting old pine floors, was blocks from the beach and from our church, Saint Monicas, where we had begun to build a community based on supportive friendships.

With our Saint Monicas group, we had barbecues and huge Thanksgiving feasts with about twelve of us crammed into our little apartment. We became close with a couple of our priests. There was always something going on in our parish, and every once in a while, the celebration went a little too far. For example, the pastor banned us from having parties on the upper floor of the rectory after he found marks where Lori had roller-skated on the wood floors (we are still trying to pretend that never happened).

For the most part, Lori and I did a pretty good job of living simply and in the moment. We understood that our joy would not be greater if we had more stuff but would be made complete whenever we focused on being grateful for what we had.

We had grown up in Florida. I had always loved being a clown (not the kind with a painted face) and getting attention. I was creative and couldnt see myself behind a desk. So after a year of junior college, during which I managed to pass a couple of physical education classes, I packed my sandals and a pair of jeans, filled my very cool black Camaro (a manual four-speed with about 12,000 horsepower) with gas (affordable at that time), and moved to New York. (Actually, it was New Jersey, but New York sounds so much more impressive.) My name in lightsthats what I thought would satisfy my inflated ego. Or maybe that was a way to serve my fragile ego: Look at me, everyone! Tell me Im wonderful (because I dont quite believe it myself).

I met with some early success: modeled in Calvin Klein ads, shot a bunch of commercials, and deepened my knowledge and love of acting. I began to see it as a calling. Or maybe I just fell more in love with the idea of being rich and famous. Anyway, I couldnt imagine doing anything else with my life professionally.

While in New York, I flirted with the production side of things. My buddies and I made some short comedic videos using Matchbox cars mixed with real cars and bad sound effects. We laughed so hard that we usually ran out of light before we ran out of ridiculous ideas to shoot. But acting remained my first love.