Preemies and “potential”

I am tall. Most of my life, I’ve been a bit on the heavy side, too. These two factors have made it difficult to find clothes, shoes, beds or cars that fit. My size is something that most people notice about me very early on, and they ask a series of questions that I find very dull, first of which is whether I play basketball because of my height. The answer to that question is no, and it is also no when it is asked of my tall father and mother, two tall brothers, and my tall sister. None of us has anything against basketball — it really is a beautiful sport, and a far less violent sport than playing football, which is the second question I get from people, and the answer to that question is also no. For a few years — maybe when I was 6 to 10 years old — I really did want to play football, and my heroes were Ricky Sanders and Darrell Green, a wide receiver and a cornerback for the Washington Redskins. These men were fast, darting across the field like a couple of African-American fighter jets.

They were also quite small, although this fact didn’t come through that well on television unless they happened to stand next to someone like Joe Jacoby. Maybe I could have been like Joe Jacoby, an offensive lineman who stood 6 feet 7 inches tall and weighed 295 pounds. He was one of “The Hogs,” and went down in history as one of the Redskins’ better offensive lineman.

I turned 12 and exceeded Ricky Sanders and Darrell Green in weight. I was never fast. I eventually made it to 6 feet 9 inches tall. I did not play sports, but I’ve always hoped there were would be a tall Ruthford some day who could actually put our athletic potential to use.

My idea of “potential” is shaped by another conversation I and my family members have had several hundred times in my life, when someone says, “Wow, you’re tall. Do you play ball?”

“No,” I would always answer.

“You should,” the bad conversationalist would continue, and then go on a long list of great things I could do while playing basketball. When this conversation occurs, I’m always tempted to tell the other person to shut up and leave me alone, but from his perspective, it makes sense. I’m guessing this guy plays basketball on Fridays at the YMCA with his friends and has a great time, and wishes he could have played college or pro basketball, but couldn’t because he was not tall enough. I, on the other hand, know that my lack of body coordination makes basketball unenjoyable, and my height is irrelevant. But, to the world of people who like saying, “Wow, you’re tall,” I am missed “potential.”

When we were getting ultrasound images of Gabriel, the technicians took measurements of his body, and saw that he was larger than would have been expected for his gestational age. Miri’s primary obstetrician, a 4 foot 11 Asian woman, at first wondered if it might be a miscount until I stood up. She craned her neck back and said, “Maybe it’s a genetic thing.”

When Gabriel was born, he was tiny at 1 pound, 6 ounces, but for babies at 22 weeks and 6 days of gestation, he was quite large, in the 97th percentile for size. In the NICU, some of the nurses also wondered at first if his age had been miscounted, but they said that he did act his age as regards his breathing problems.

My height had finally helped with something. Many Dads will feel rather useless during the process of pregnancy, childbirth and newborn breastfeeding, getting to be like a substitute mother equipped with fewer features. In my case, however, I felt like I had done something that was actually necessary for his survival.

Over the next several weeks, he fell behind quite a bit in size, getting down to the 25th percentile in length for other babies his gestational age. This made me sad because now it seemed like Gabriel would not get to take advantage of his height — he would be average, or maybe short. I felt like he was getting cheated, not that I would complain to the doctors about this, knowing all of the other impossible things Gabriel was doing in his situation.

When Miri was in labor and Gabriel was in his last few hours of being a healthy fetus, I thought of that moment as a rock under my skin — a moment that would remain stuck with me forever, the moment when “future Gabriel” would be mutilated, and our child would suffer brain bleeds, severe lung problems, and might not make it. I believed Gabriel was a fine boy with the potential of living as full of a life as that of my grandfather, who died a couple years before Gabriel was born at the age of 94.

Did Gabriel’s falling behind on the growth chart mean that the U.S. Olympic Team had just gotten cut out of a gold medal in 2032? A silly thought, but sitting in the NICU for five months, you’ve got plenty of time to come up with them. It was during this time I began to understand how my thoughts were getting warped by the medical crisis.

We had taken a very black-and-white, heaven-or-hell attitude about keeping Miri’s pregnancy going, and then about keeping him alive as we had gotten the abort-and-abandon recommendations from the doctors. He was a person, a family member, we kept saying. He had yet to show any personality traits, he had yet to do anything cute that we’d look back fondly on if we lost him, but he was still our son. It enraged me that for whatever reason, we look upon people who cannot express their personalities as less than a person. My opinions on abortion during this time went from being respectfully opposed to it to wishing I could have a dragon that would burn the hair off of pro-choicers’ heads.

This black-and-white thinking had kept our son alive, but it was losing its usefulness. Gabriel certainly is a person with a right to life, but he’s not entitled to all the success that I want him to have. And, if he has a problem during this time in the NICU, that’s not the day his future is cut off, and that’s not the day he becomes a lesser version of himself. It’s been said that the child is “the parent of the adult,” and our infancy and childhood certainly are important to our future, but our present and our future are not as connected as I think they are. I am a fan of science fiction, which often includes time travel, and a common theme is a moment when the time travelers influence someone in the past, and everything changes dramatically, never to be the same, often with catastrophic results.

During this time, we came to better know the story of a girl in our church who was 14 years old, but less than four feet tall, and lives with a number of mental and physical disabilities. She, too, was born premature, but she also had hypoplastic left heart syndrome. She got her own miracle-baby record as being the smallest child at Children’s Hospital of Philadelphia to have open-heart surgery. The doctors told her parents that she’d never be able to walk, eat, or talk. She does all three now. Watching her walk around church, interacting with her sisters and others in the church, I thought about my notion of “potential” and realize I could never call her a lesser version of what she is supposed to be.

There’s a question that most of us ask when we’re in a crisis, or when we hear of a horrific loss of life in a war or accident in the news — why, if God is good, would He allow this bad thing to happen? The people who were killed weren’t bad people, why did they deserve this? One of the answers to this question has to do with who we are. God certainly has the power to stop these things from happening, but he would have to change us so much that we would no longer be ourselves, in effect taking away our free will, and God simply does not want to do that. He’s willing to help us change if we ask, but only if we ask.

The prayer that we give, “God, why don’t you go back and prevent this?” is one that will always go unanswered even if it’s one we ask the most.


3 thoughts on “Preemies and “potential”

  1. “It enraged me that for whatever reason, we look upon people who cannot express their personalities as less than a person.” Thank you for putting this into words. After my own experiences with family members with disabilities and working in a nursing home for a few years, this became vividly important.

  2. I remember sitting by Charlie’s isolette and having similar thoughts. I was discussing my thoughts with a NICU nurse I had grown close with. She told me a story of a baby that was profoundly disabled. (Looking back, I’m not sure why she told me the story.) When she paused, I asked if the baby in the story could do anything at all. She explained that he could hear. I blurted out, “Well, then I would play music for him.”

    Something clicked. That was the moment I stopped fearing Charlie’s future. I knew whatever the future held for her, we could give her a quality and enjoyable life. That is all I really wanted for her in the first place… before her early arrival.

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