Sunday, May 30, 2010

In the beginning....

“Whatever did not fit in with my plan did lie within the plan of God.”
-St. Teresa Benedicta of the Cross

I remember the call like it was yesterday. It woke me from this wonderful dream about my beautiful wife and my brand new, perfectly healthy son. "We need you to come back to the hospital. We believe your son has some genetic issues we need to discuss with you and your wife." The pediatrician sounded like she was a million miles away. Of course she was already distancing herself emotionally...what news to have to give to a first-time father who six hours earlier was sent home with the promise that everything was fine.

The doctor gave the phone to Jenni, without telling her anything about "genetic issues". "Ross, what's going on?" All I could mumble was, "I’ll be there in twenty minutes and we'll figure it all out." I hung up the phone and collapsed into a chair. Figure it all out? The doctor was talking about Down syndrome. I don’t know how I knew, but I didn't even have to ask. My head started to swim, and my breathing suddenly became very shallow. I tried to tell myself that the doctors could be wrong, and that there was no way two healthy young parents could have a child with Down syndrome. Besides, throughout the entire pregnancy none of the screens or ultrasounds had picked up any sign of problems. This couldn’t be.

But as I sat there in our kitchen, looking out at the start of a bright sunny day, I knew that the doctors were not wrong, and that two healthy young parents could have a Down’s baby, and that not all screenings and ultrasounds pick up irregularities in a pregnancy. Most of all, I was overwhelmed by the realization that my life had just taken a sharp turn and that nothing would ever be the same again. John Michael Porter, miracle, mystery, perfect gift of God was born with strawberry-blonde hair, blue eyes, and 47 chromosomes. In addition, he had two major heart malformations and needed his first heart procedure at three days old to save his life. Over the next two years, he would have pneumonia and two more open-heart surgeries. If John Michael had been born twenty years earlier, he would not have survived one week. The technology that saved his life had not yet been developed.

I know without a doubt that I would be a very different person if I had lost my baby boy. I would still believe deep down that giftedness was best defined by I.Q. tests, and the formula for success was a good education coupled with a high paying job, and that “retarded” people couldn’t be teachers. I’ve found that this is the worldview of most people in our society…especially if they haven’t experienced the beauty of a special needs person face-to-face, and heart to heart. People who carry this bias are not bad, they’re just mistaken…like I was mistaken for the first thirty years of my life.

Some lessons can only be taught in the context of a relationship.

Tomorrow, May 31st, the Feast Day of the Visitation, our John Michael turns 16 years-old. The little boy Jenni and I had baptized at 16 hours old, because we thought it would be the last thing we could do for him before he returned to God, is about to turn 16. Amazing. My heart is so full of gratitude for the gift of his life, and for the gifts all our special needs children are. But my heart is also heavy, knowing how frighteningly few of these precious children are even given the chance to live, to love, and to change the world around them with their smiles, and hugs, and innocence.

Please join me in praying for those who are, or will become, pregnant with special needs children; that they are able to see with eyes of faith the gift they've been given, and that they will receive the support they need to embrace life. Because if they choose life, they will be changed forever...and the world will be a better place.

And thank you John Michael for being my hidden grace, my greatest teacher, my heart. You're daddy loves you beyond words.

Friday, May 14, 2010

A thing of the heart

When one speaks of courage, images that jump to mind are of heroic action: the first responders on 9/11, a teen-aged St. Joan of Arc leading the army of France into battle, the soldiers who stormed the beaches at Normandy. Certainly these are all outstanding examples, but can also lead people to believe that courage only happens on the largest of stages, with lives in the balance. We miss the full beauty of this virtue if we don't recognize that courage is just as fully presented in the "little things"...victories that can't be quantified. Victories that can only be measured by the heart.

In fact, the word Courage comes from the Latin for "Heart". Courage takes the "thought" to do good, and puts it into action. To resist giving in to obstacles, and to take positive action...that's courage.

And there was plenty of courage, heart, on display yesterday at the Chaminade College Preparatory baseball diamond.

My dear friend and colleague Joe Sikorra was there with his son John. John is blind, and struggling with the devastating effects of Batten disease, a neurodegenerative disorder. But his dream has always been to play high school baseball. He's been on the team as a "coach" this year, but that wasn't enough. He wanted to hit, and he wanted to run, and he wanted to score.

So, yesterday at the start of the game, the manager chose John to be the leadoff hitter. The visiting team took the field, honoring the moment with their cooperation. A ball tee was placed at home plate, and Joe led John to it...and then stood back and let him swing for the fences. And did he ever! As John, led by his father, rounded the bases the crowd rose and cheered, a boy's dream was realized, and this weary world seemed just a bit brighter.

Courage. It's the virtue of battlefields and burning buildings. But yesterday it was also the virtue of a high school baseball diamond, when a beautiful young man running short on time and his proud father grabbed hands and together charged past fear, and indifference, and passivity and into an immortal moment that all of Heaven cheered...along with a couple of hundred people on earth.