In honor of Down Syndrome Awareness Month, I am posting the introduction to the book Jenni and I wrote about life with John Michael, entitled Hidden Graces. Now 22 years-old, John Michael has become my “professor of love”—he is a gift I could never have imagined or deserved. He is beautiful in every way, and the world is blessed to have him in it.
“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 lived to see his second birthday. 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.
God has opened a new world to me through John Michael, one that is very much like an elegant tapestry. It is rich in its balance of colors; lights, darks, and many shades in between. It is textured with interwoven threads, and imbedded with a design too complex to make sense of up-close but wonderfully clear with the proper perspective. It is both beautiful and lasting. My chapters are a heart-felt offering of what I have been taught in relationship with my first-born son, and I believe in the relevancy of this book because each story points to the deepest story…the story of God’s love. And God’s love applies to everyone, whether they have a special needs child or not. This book is about seeing with eyes of faith. It is about recognizing hidden graces, understanding natural wisdom, and celebrating the poetic beauty of a simple life. Hidden Graces is a personal tribute to John Michael, and to all special needs people who have so much to teach the world. In addition, I trust that these reflections honor my wife, my love, and my soul-mate Jenni. She is my partner in this journey and the finest person I’ve ever known. Most of all, this book is a gift to God, in thanksgiving for His faithfulness and generosity.