The baby boy’s hair was curly and strawberry blond. Just like his daddy’s.
Born a half-hour past midnight on the last day of May, 1994, at a hospital in the San Fernando Valley. The firstborn for Ross Porter, who studied to be a Presbyterian minister, and Jennifer Porter. She held him as long as she could. After, the young woman slept until his 5 a.m. feeding. This time the new mother and son had about 45 minutes together. They cuddled. He ate and slept. She fell asleep again, too, waking up around 7:30. Just couldn’t wait for her son to be in her arms again.
When Jenni called the nursery, they told her the doctors were still checking on all the infants. They’d bring him to her right after. The high school English teacher called friends at school, gushing how she was finally a mom after 22 hours of labor. Ross had coached her through the whole thing. Her friends said they’d be there as soon as they could.
Then she called Ross.
That’s when the pediatrician walked into the room. She had to speak to both of them. Right now! Taking the phone from Jenni, she said in a clinical voice, “There is a problem with your baby’s heart. He’s in the NICU (Neonatal Intensive Care Unit). We expect some genetic problems.” Then she just handed the phone back and walked out. Ross, thank God, said he was on his way.
Still weak and struggling to get out of bed, Jenni couldn’t understand. The delivering doctor said their baby was sure a lively one, squirming to get out of his arms. And didn’t they tell Ross he could go home, get some sleep? Mother and son were doing fine. What changed? What happened to their child in six hours?
nGenetic issues
Ross thought the pediatrician had sounded far away on the phone. And there was no emotion in her voice. Genetic issues? And it hit him — “genetic” was code for Down syndrome. He didn’t know how he knew, he just knew. But then he told himself healthy young parents couldn’t have a child with Down syndrome. Staring out their kitchen window at the early morning sunshine, however, his mind turned again. Sure it was possible. Their son with the bad heart could be a Down’s baby.
And then another thought pushed aside all the others — their by-the-book suburban lives would never be the same.
Back at the hospital, doctors were able to stabilize the infant in the NICU. Ross baptized “John Michael” during the 12th hour of his life. And later that same day, he was transferred to Cedar-Sinai Medical Center for genetic testing and to get ready for his life-saving procedure in two days. Only three-days-old and he was going to have a life-saving procedure.
A cardiologist explained what happened in a valvuloplasty. They would insert a balloon through John Michael’s heart, hoping to open up his mitral valve so oxygen could flow freely. The hole in his heart could wait. But if the valve wasn’t opened, he would die. Maybe by the end of June. Surely within a year. So now, knowing what they knew, it was time to make an “informed decision.”
“There are people in your position who would elect not to go through with this procedure,” the specialist pointed out.
What? Is that what he really said? Jenni and Ross couldn’t believe it, and their expressions gave them away.
“I know what your answer is going to be,” the cardiologist added, “but I needed to say that.”
Ross figured he must have been protecting himself in case they sued. Doctors had to lay out all the options for patients.
What flashed through Jenni’s mind was simply “What other choice could we make to save our son. Could we just stand by and let him die?”
So the next day, John Michael had the valvuloplasty.
nLessons from God
Today, 21 years later, Ross Porter is a clinical psychologist and author, a convert who directs faith formation and evangelization at St. Mel Parish in Woodland Hills. Jennifer Porter teaches religion at Chaminade College Preparatory High School in West Hills. John Michael is 21 years old. And he has three younger siblings: Austin James, 19, Dillon Patrick, 17, and Annie Elizabeth,13.
Together, in the early 2000s, Ross and Jenni wrote a book about their first-born. “Hidden Graces: Meditations on God, Life and a Very Special Boy” covers the first eight years of their son’s life. The first half from a father’s point of view, the second from a mother’s.
“The book about John Michael is a very special book because it’s written from a father’s and mother’s perspective,” Ross told me last month in his walk-in-closet-sized office at St. Mel’s. He was behind a wood desk with his firstborn sitting on the other side, head buried in a coffee table book with glossy color photos of houses. “We talk about the lessons that God taught us through John Michael. It’s mostly about his early years, when he was born, when we found out and getting him into the school system, up to when he was 7, 8.
“I wrote it,” he pointed out, “because so many people asked me what was our experience with John Michael. What was it like to have a child with Down syndrome.”
n‘Professors of love’
The clinical psychologist also holds a Master’s in Divinity from Fuller Theological Seminary in Pasadena.
But in 1989 he went to Rome with a friend, a Benedictine monk, and at a semi-private audience had a 15-second conversation with Pope John Paul II. That solved his last issue with Catholicism — papal authority. And it finally clicked. This was his real Church. The same year he and Jenni got married. That was the only big change he wanted to make in his life right then. So it wasn’t until three years later that he officially joined the Catholic Church, with Jenni following in 1993.
John Michael came in 1994. “And everything kind of changed,” he said. “It’s interesting. You don’t know what you don’t know. He was born and all of a sudden we became acutely aware of the deficiencies in reaching out and including special needs people.”
Ross says it was Mother Teresa who captured the essence of special needs persons when she called them “professors of love.” They teach the rest of us so-called typically developed people what’s essential, what really matters in leading a good life. And his son’s no different.
“John Michael is the most joyful human being I’ve ever been around,” he said, turning to his son. “Aren’t you, buddy?” And then back to me. “He’s just loving, and he’s accepting and he’s kind and he’s caring. He speaks more with his being than with his words. But he’s remarkably intuitive.”
Ross says he’ll walk into a room and just know who needs a hug. And then he has the audacity to actually go and give that person one. So he loves boldly.
“He’s always happy; he’s always joyful,” he reported. “John Michael’s very engaged in life. He wants to go to parties and say hello to people. And wherever we go, he’s the one who everybody wants to be with the most because he’s so precious.
“And he’s my greatest teacher. Because what really matters in getting to heaven is what John Michael specializes in. That’s his area of specialty: how to be kind, how to be loving, how to be caring, how to sacrifice for others. Those are his specialties.”
But there’s something else.
“Just by virtue of being a child with Down syndrome he gives a witness in his physical being to the importance of special-needs people,” Ross explained, leaning forward. “You know, you don’t see a lot of Down syndrome people anymore. So many of them are aborted because the technology has gotten so good at predicting.”
After a moment, he noted how technological advances saved the life of his son, who was still engrossed with the coffee table book.
“I mean, God saved his life through technology,” he pointed out, “He’s had three heart surgeries. So we’re grateful for technology. But the other side of it, the dark side, is it’s eugenics. But John Michael is not a mistake. And the world needs John Michael, and the world needs people like John Michael.”
nBeing in the moment
“What have I learned from John?” his mother asked, echoing my question. We’re on the side of St. Mel Church, weeks later, after a photo shoot with the whole Porter family. There’s white, red and orange flowers growing in a bed, with a stone statue of the Blessed Virgin Mary off to the left. We’re standing on thick green grass that’s escaped the draught. John Michael has on a short-sleeve blue-and-white polo shirt over khaki shorts that fall just below his knees.
“There’s been a lot I’ve learned, but, you know, to be in the moment, to enjoy what life hands you right there,” said Jenni. “And to live it and say, ‘OK, this is the day the Lord has made’ and to not worry about the other stuff. Because that’s the most important part of life — to be in the moment and to enjoy it.
“John also has taught me patience, because he has unending patience and things move more slowly in his world. He gets himself dressed and does his chores. He doesn’t do them at the fast pace that I do. So I think, ‘What am I in a hurry for?’”
Her son takes to heart working around their home, she points out. Separating dirty clothes into whites and colors becomes a focused mission. He makes sure the dog gets fed and let out. He pets the dog often.
Like her husband, Jenni brings up how you see few people like her son out and about these days. She believes misunderstanding and stigma drive the medical field to encourage abortions. And our nation suffers.
“I just think that it’s really important to embrace what people consider the weakest part of our society because it makes our society stronger,” she said. “But it also makes you stronger because you recognize that they’re not the weakest after all.
“But John’s happy,” his mother added. “He’s joyful. He loves Jesus. There’s a kindness about him, a generosity of spirit. And I think that’s strength. And learning from that is really important.”
