Joe Sikorra

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It is said that what doesn't 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.

1998, when our older son John turned seven, my wife, Lori, and I shared a parent’s worst nightmare: “Your son has a neurological disease. It is fatal,” the specialist said. I will never forget the day; it was Ash Wednesday.

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

Six months later we were told our other son, Ben, four years old, suffered from the same disease. Two sons stricken with the same debilitating disease and a lifetime devoted to dealing with the effects.

“How tragic. How awful,” you might say. Can you imagine breakthrough under those circumstances? Can you imagine these very same lives experiencing joy in abundance? Overflowing love? Laughter? All of that alongside such heartbreak? Is it possible for all of these contrary emotions to exist within one heart? One family?

“Impossible,” I say. But not for a heart transformed and molded by God.

Along the difficult journey, I, we, made numerous and wonderful discoveries about struggle, loss, life, death, friendship, resilience, support, depression, anger, laughter, faith, the power of choice, touch, marriage, play, vocation, guilt, humility, pride, acceptance and barbecuing. (Not all discoveries have to be life changing.)

The saying, “The unexamined life is not worth living,” is attributed Socrates. I was  never that interested in reading about life from a book and examining its meaning. That to me didn’t seem to be a very good vantage point for examination, nor did it seem too meaningful. I didn’t choose the Batten disease road. Most people in their right mind don’t choose pain. And Batten’s would bring all kinds of pain. But how I, we as a family, chose to engage in the struggle was made up of a myriad of choices daily. The battle was to find light. And to do that, I would not only have to examine, but act, trusting that each step would bring me closer to that light. Breakthrough.

Families and marriages, understandably, often crumble under the weight of such crushing circumstances. Typically, they breakdown, not breakthrough. Our struggle was not against a diagnosis. That was a one day event that quickly became history. If victory over the past were to occur it would have to be found in the moment. But how? We would meet the enemy each day: declining health, loss. And each day we were given a choice as to how to meet it: with courage and resistance, love and laughter, faith and hope. But these words would provide nothing if they remained just words found in scripture used as slogans. Those were the tools and weapons offered, and if we used them well the victory would yield peace and joy. We didn’t always win. Sometimes fear, rejection, depression ruled the day. The battle was sure to be long and victory never assured. Love, hope, faith and trust would be fashioned in struggle and tears. And our lives seemingly continued to grow and become increasingly enriched as a result of... What? The struggle? Why? How? Sound possible?

Well, as the Good Book says, Not for man, but with God all things are possible. [Matthew 19:26]. As Paul the apostle says, “I’ve learned by now to be quite content whatever my circumstances. I’m just as happy with little as with much, with much as with little. I’ve found the recipe for being happy...” [Philippians, Chapter 4, The Message]. But happiness isn’t found by keeping struggle at bay. Nor can it be denied. But we can experience breakthrough if we utilize it to learn and grow.

My son John passed away three years ago. My breakthrough was when I received the grace to pray what Jesus prayed when he went to his crucifixion, and I ask that this be your prayer throughout this Lenten season (and beyond):

“My Father, if it is possible, let this cup pass from me; yet not what I want but what you want” [Matthew 26:39, NRSVCE].

"If you have ever experienced a loss or want to prepare yourself for that day, the wisdom in  Defying Gravity  will prove invaluable. Joe Sikorra and his family found a path through life's darkest valley and can light the way for us to follow."   —  Robert Maurer, Ph.D ., Clinical Psychologist, UCLA School of Medicine; Author,  One Small Step Can Change Your Life

"If you have ever experienced a loss or want to prepare yourself for that day, the wisdom in Defying Gravity will prove invaluable. Joe Sikorra and his family found a path through life's darkest valley and can light the way for us to follow."


Robert Maurer, Ph.D., Clinical Psychologist, UCLA School of Medicine; Author, One Small Step Can Change Your Life