Taking refuge in God’s heart

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.

Joe Sikorra

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. 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,” we heard. Yes. But can you also imagine these very same lives experiencing joy in abundance? Overflowing love and laughter alongside such heartbreak? Is it possible for all of these contrary emotions to exist within one heart?

St. Paul, whose life personified struggle, redemption, and joy, knew the words of Jesus to be true: “Not for man, but with God all things are possible.” (Matthew 19:26)

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

I didn’t choose the Batten disease road. Most people don’t choose pain. And Batten’s would bring all kinds of pain. But how we chose to engage in the struggle was made up of a myriad of choices daily. The battle was to find light.

Socrates once said that “the unexamined life is not worth living.” To do that, I would not only have to examine, but act, trusting that each step would bring me closer to that light.

The struggle was crushing many days and understandably, for many families and marriages, the weight of those circumstances would have been too much to bear.

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 in the declining health of our sons. And each day we were given a choice as to how to meet it: either with courage, love and laughter or with despair.

We didn’t always win. Sometimes fear, rejection, and depression ruled the day. The battle was long and victory never assured. Love, hope, faith, and trust would be fashioned in struggle and tears.

Yet faith and hope would provide nothing if they remained just words found in scripture used as slogans. Those were the weapons offered, and if we used them well, the victory would yield peace and joy. Our lives seemingly continued to grow and become increasingly enriched as a result of the struggle that continually brought us to our knees.

We had to take refuge in God. The only other option was to turn away from Him.

As Paul writes, “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 have learned the secret of being content in any and every situation…” (Philippians 4:11-12). Happiness isn’t found by keeping struggle at bay. Nor can it be denied. But if we learn to embrace it, we can utilize it to learn and grow and ultimately experience true joy in Christ Jesus.

JOE SIKORRA writes about his family’s struggle with the diagnosis of Batten’s disease for his two sons in his new book, Defying Gravity: How Choosing Joy Lifted My Family from Death to Life (Ignatius). He is also a marriage and family therapist and host of “The Joe Sikorra Show” on Relevant Radio.