Byzantine Catholic Family Matters

And a Child Shall Lead Them

In Memory of My Beloved Son Paul

"Mom," "Dad," "Hey, Dad," "Hey, there," "Addie," "Esther", "up," "home"... These words came early in his life, the sum total of my beloved son Paul's spoken words. What doctors call a catastrophic event reduced, at age three, his spoken words to "Mom," "Dad," and "home." In the few months before his death these words were uttered far less frequently.

The full name of the mitochondrial disorder (see www.umdf.org) that Paul was born with is enough to leave chills running up your spine: Leigh's subacute necrotizing encephalopathy. Through the eight years and eighteen days of Paul's earthly life we experienced moments, days, even weeks of anguish and terror. Mother's Day 1997, nearly one year old, Paul stopped breathing in the car. He was rushed to the hospital while his mother performed CPR. Eleven weeks later Paul was sent home on a ventilator and with an experimental medication - sent home by his doctors to die. My wife Caroline and I asked family and friends to pray for the intercession of +Father Walter Ciszek. Within a few months Paul was off the ventilator; by year's end the trach was removed. For the next two years Paul was in and out of the hospital, a couple of times near death, but my "Comeback Kid" always bounced back. We then had a very nearly five year span where Paul needed no hospitalizations - not until the final two and one half months of his earthly life. By the grace of God Paul defied the odds - when he was diagnosed, fully seventy percent of the children with Leigh's syndrome died before attaining the age of three.

During the eight years and eighteen days of Paul's earthly life, we learned some very important lessons. St. Francis of Assisi said, "Preach the Gospel at all times. When necessary, use words." Despite his very few spoken words, Paul communicated volumes to us with his penetrating blue eyes, his smiles, his laughs, his gestures, his touches, his reaches, his hugs, and on a very few occasions, with his tears and grimaces. There is no doubt that Paul knew our love for him; and Paul always communicated his love to us.

We came to appreciate simplicity - a walk on the boardwalk, a picnic on the grass, a twenty minute long hug, falling asleep in one another's arms, going to church as a family; so much else is mere distraction and frivolity.

We learned how precious every moment is. Every birthday, every Christmas celebration, every Paschal feast, every summer holiday to Ocean City we knew could be our last with Paul.

We learned firsthand the power of the powerless that author Christopher De Vinck spoke of when writing about his multiply handicapped brother. When Paul - the only child in his special-ed pre-school class who could neither walk nor talk - arrived for school, his classmates would stop whatever they were doing and circle 'round him and he would hear a chorus of "Hi, Paul!"

Finally, we learned to take nothing for granted. In the weeks before his death, there were times when Paul did not have the strength to smile. I will always remember Paul's broad smile when he woke up one morning a few days before his death and saw me at his bedside.

Whenever I was out walking with Paul, pushing him along in his wheelchair, I would often think of the words of scripture "this is my beloved Son, in Whom I am well pleased." Thank you, Paul, for teaching me so much about life, love and fatherhood. Eternal Memory!