Blow on the coal of the heart.
The candles in churches are out.
The lights have gone out in the sky
Blow on the coal of the heart
And we’ll see by and by.
—from J.B.: A Play in Verse, by Archibald MacLeish
Cornflower blue skies and crisp breezes are what I remember. The image of a beautiful blue October sky marks a moment in time that stilled my young heart and opened my life to an extraordinary gift. I had no idea of what was to come—I understood only that my husband and I were about to begin a journey that would indelibly mark us for life.
Our story begins in a predictable and familiar manner: boy meets girl and they fall in love. Bill and I met during my freshman year of college; we married five years later. It was the late 1960’s and life was changing rapidly. Social barriers were falling, cultural mores were in flux. There were still major hurdles for disenfranchised people in America to overcome, but those hurdles seemed somewhat remote from our immediate concerns, which were focusing on our love for each other and building a life together.
After our wedding I relocated to the Boston area, where Bill was in graduate school. The first few months were beautiful and carried their own magic weight in our hearts. I recall long walks from our place in Somerville to Cambridge, where we would picnic on the Charles River, eating a meal that I had spent the entire day preparing. On weekends we roamed through bookstores and planned for our future. Sunday Mass at St. Paul’s in Cambridge, and frequent discussions about what our Catholic faith meant to us, were common during those first months together.
The news of my pregnancy, in the early spring of 1970, was greeted with such joy! The anticipation of holding that new baby filled my every waking hour. To say we were thrilled doesn’t seem to capture what we felt. Bill continued with his studies and searched for “real” work to support our growing family. As good fortune followed us, Bill secured a position as a high school history teacher at a private boarding school. He studied for his comprehensive exams during the summer.
October 4, 1970, dawned with the arrival of our beautiful son, Luke. It was a lovely and treasured birth and always will be for us. Bill had to return to our apartment following the delivery to get ready to teach in the morning. I recall that the doctor came to my room at about ten that evening. He told me that Luke was a Mongoloid baby (“What was that?”), and that he had a blockage of his intestine. I needed to make an immediate decision as to whether or not he would be operated on. I was 24 years old, alone, and did not understand what the doctor meant— could he really be asking me to agree to let the baby starve until he died? I told him to operate. Then I called my husband, and the rest is a blur. Here is where this story will be familiar to many parents. There is the shock, of course, the need to absorb, and, more importantly, to understand what this means for your child. How do you best meet his needs? Really, what do you do—what happens now?
Luke spent from October until December in the neonatal ICU at Massachusetts General Hospital. We were there every day to be sure he was held by us. His inability to absorb nutrients puzzled the doctors. Eventually, the good fortune of being in a top-notch hospital created the opportunity for Luke to benefit from what was then new technology: an intravenous catheter was inserted into a scalp vein and he was fed intravenous parenteral nutrition through this vein— basically amino acids and trace elements with glucose. This gave his intestines needed time to recover from the surgery. Within a few days, his tummy was functioning and he was home with us for Christmas.
“Treat him like you would any baby!” These words of advice from my husband meant the world to me. Bill is an extraordinary man, and I say this understanding that he has flaws. He is a man of great love and kindness. He grew up on a dairy farm, which he managed at certain points in his life. He has baled hay, spread manure, and milked cows—in ungodly weather and at ungodly hours. He understands hard work and he understands tenacity. He is also a man of enormous faith. Indeed, faith is the bedrock of his existence; it drives his every move and thought. Luke’s birth was an opportunity for me to share in a more profound way the faith that is the engine of my husband’s very existence. I have turned to that faith in countless ways over the 47 years we have been married.
The years following Luke’s birth were filled with learning—about how to be parents and about how to think about our new role. Luke did not sleep well at night and my husband would walk him endlessly up and down the halls of the dormitory we were now overseeing as dorm parents to 60 high school students. The students embraced Luke as the beautiful baby he was, and I will be forever grateful for the support they provided us.
Trips to the pediatrician proved that Luke would be a healthy and robust child. Yet when I found myself pregnant with our second child about a year after Luke was born, the pediatrician’s remarks to me were unsettling at best. “You should really consider having an amniocentesis to see if the new baby has Downs. You have a social responsibility to do so!” I changed pediatricians instead.
When he was three we enrolled Luke in a preschool comprised of typical three-year-olds as well as children with disabilities. At the time this kind of integration was revolutionary—the beginning of a wave of change in the world of disabilities. His first teacher, Mary Wiley, encouraged me and taught me common sense when it came to raising children. She was a great gift.
In the ensuing years Luke taught me how to be both a mom and an advocate for people with disabilities. Along with four other women, I helped develop an educational program, now called “Understanding Our Differences,” which encourages third and fourth graders to imagine what it is like to have a disability. Volunteers spend 20 hours in the classroom doing simulation activities that mimic in some way the disability about which students are learning. Individuals with various disabilities talk to the class about what their lives are like. It’s a magical program that breaks down barriers so students can give voice to the questions they have in their heads: “What’s it like to get dressed if you can’t see?” “What does it feel like to be called ‘retard?’” “Do you have a girlfriend?” And it is still being implemented in public schools in Newton, MA. The friendships that were shaped during the program’s creation are also enduring. A few years ago, the five of us gathered for a weekend together, catching up on each other’s lives and dwelling in the warmth of the very special bond we share.
I call Luke “The gift that keeps on giving!” The eldest of five siblings, he is the heart and hope of our family, the joy and the light of our lives. Sharp and intuitive—and possessing a delightful sense of humor—he is always ready for a laugh when his brother and sisters walk in the door. He has taught them patience and compassion—to have a deep feeling for those less able than they are. And this lesson has been passed on to their children.
Luke’s sister Katie shared this story with me. After school, she was at a local playground with her three small children. A young mother pushing a stroller approached where they were. In the stroller was a little boy about five, the age of Katie’s youngest, Xavier. It was apparent to Katie that he had Down syndrome. He had difficulty walking and displayed no obvious language skills. But this little boy loved the slide! He was able to navigate up and down the slide with such glee and abandon that Katie took notice. At a certain point in the afternoon the young mother approached Katie and asked her if Xavier was her child. Katie’s affirmative response brought the following comment from this young mother: “He’s a lovely child. He asked my little boy to play—no one has ever asked my boy to play with him.”
Today, Luke works with older adults at an assisted living facility. He is unfailingly kind and generous in his heart to those he sees at work, at church, and in our community. People like Luke are often overlooked by those whose lives are busy and full, but what I have learned from Luke is, if you pause and listen, you will be rewarded with the extraordinary beauty of this young man. His is the kindness and sweetness that must be so close to the heart of God that it sometimes takes your breath away. Luke’s light in the world shines on our life and the lives of those we may never know. What a blessing. Thank you, Luke!
Absolutely beautiful!! I love your family!! -Katie’s friend Lien xo