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 don’t really remember everything he said. For that matter, I don’t remember the doctor or anything else of substance about the meeting. “Fatal” was all I remember. It was as if all the oxygen and warmth had been sucked out of the room. We couldn’t think. We couldn’t breathe. Shocked, we collapsed into the sterile chairs of the doctor’s office. They offered no comfort from the weight that had been dropped on us. Slowly, emotion crept up from the bowels of our innermost being and we gave way to a torrent of tears. Needing to breathe, 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, leading to John’s death in his late teens to 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 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 could we find a path through life knowing we’d just been given a death sentence? If hope is defined by believing in the good one can’t yet see, what chance would there be for us to have any hope, given the b...
... middle of paper ...
...ith 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 if we learn to embrace it we can utilize it to learn and grow.
Paul’s recipe is not a secret to be kept, because it is God’s recipe for our happiness. I never could have imagined such tragedy befalling my family; nor could I ever have imagined that out of the dust and pain, the trials and struggle, we as a family could experience unimaginable blessing.
Our lives could have been only tragedy, with despair and isolation coloring our every day. That was not what happened, and this is our story...
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