On Father’s Day — loving every moment
Fear my dad’s genetic disorder would take him from me too soon kept me away too long
The first time doctors sawed my father’s rib cage open and stopped his heart, I was 8 years old.
A team of cardiothoracic surgeons at the Mayo Clinic in Rochester, Minn., replaced his aortic valve and installed an arch, a backup if his heart dissects. Afterward, my mom drove him home to Omaha, Neb., reclined in the back of our white minivan, his long legs stretched down the aisle. I didn’t understand what had happened then, only that in the months after he no longer swam barechested at the public pool and that the bathroom cabinet overran with dozens of orange plastic bottles. His heart no longer softly thrummed; it made a metallic tick-tick-tick.
My dad, Steve Johnson, 55, has Marfan syndrome, a connective tissue disorder that prevents his cells from correctly growing and developing. It comes from a mutation on a gene that makes fibrillin-1, a protein that acts like cement and holds our bodies together. He has all of the disorder’s hallmarks: He is slender and, at 6 feet 8, occasionally hits his head on door frames. His fingers are long and bony, and his feet are flat. Abraham Lincoln and Julius Caesar are thought to have had Marfan syndrome. There is no cure.
In my family, we rarely acknowledge the disorder that has shaped his life and ours with him, the silence a vanguard against the truth. Once, I asked my dad about his greatest fear. He was reading the newspaper at the kitchen table while I made cinnamon toast. “I didn’t think I would see you graduate high school,” he said. I turned my back and didn’t respond.
The best gift my father gave me wasn’t a gift at all, but the lack of one. Marfan syndrome is a genetic disorder with a 50 percent chance of being passed on. Two of his three brothers inherited it. But when I came screaming into the world on a mid-February morning, he knew I was different. The obstetrician palpitated my chest and measured my tiny wingspan, then sent my umbilical cord blood to the lab for testing. When the diagnosis finally came, he felt the universe explode and expand. I was Elizabeth, like the great-grandmother I would never know. I was healthy, like he never was.
My brother — who also avoided inheriting the faulty gene — and I have both broken our dad. Daniel cracked one of his ribs cannonballing off a living room chair; I cracked
another swimming past him in a hotel pool. In those moments, we were forced to understand his fragility. But I grew up sharper and surlier. I cut him with my words, too, and pushed away. I wanted to escape Nebraska, where my classmates stayed to study at the local university, stayed to get married, stayed to have their babies. I wanted to flee the looming reminder that any day my dad could die. I mourned for someone who was still alive.
I went to college in Missouri, a four-hour drive away and far from everything I knew. That first fall, in 2011, he was hospitalized. I had been watching a movie screening for new freshmen on campus. My aunt called late at night, and I answered, voice syrupy with Everclear and blue Slurpee. But I never went home to see him, too caught up in midterms and fraternity parties and the boy down the dorm hallway who kissed me with his eyes open.
Besides, Thanksgiving break was coming. There would be time for us.
I moved farther, to Buenos Aires, to Dallas, to Chicago, and then west to the Bay Area. His love pulled at me — suffocating, sustaining. “When are you moving home?” he would ask every week.
He packed homemade pesto in 3ounce Ziploc baggies and brought them through airport security on visits. He ate cherry Jell-O and watched HGTV with me after my impacted wisdom teeth were extracted, and he helped me fix a flooded motel toilet over the phone the night I turned 24, when I was dispatched to a faraway town on a work assignment.
In December, a year since I had last visited Omaha, I took him to an Indian restaurant in a strip mall near my childhood home. I referred to it as “his house” in passing. He blinked, Adam’s apple bobbing, and looked away as I backpedaled. My home had become somewhere far from him — a place he didn’t belong. I flew back to California a few days later.
How do you make peace with the guilt of leaving behind your parents? Of forgoing precious time? He is older now, his body rebelling and his heart beating past its typical life expectancy, once pegged at the mid-40s. “I miss you. I love you,” he says during every call, his devotion unwavering and support constant.
In those moments, the voice I hear belongs to the father I knew as a child: strong and sure. The man who cradled me against his chest as we watched thick summer storms roll across the prairie from our back porch, the clap of thunder and the beat of his heart in my ears. The man who hoisted me on his shoulders — high above everyone else — and made me feel like I could fly. The man whose patience never snapped, even as I pulled away, and who still signs every text message “Love, Daddy.” I am my father’s legacy; I am reminded of it more each Father’s Day. I am everything my father couldn’t do, and can’t do, and will never do. My entire life, I’ve ignored the disorder that dictates his. Until the moment I couldn’t.
“Anything past this is extra time,” he said to me on a recent hike in Marin County, the late January sun warming our backs. We had stopped to watch the shorebirds flying above Phoenix Lake. I held his hand, the callouses rough against my palm.
Time is passing, carrying us deeper into the unknown. The decline is part of growing up, of coming into my own. I could not stay forever dependent in his hands, just as he could not stay forever golden and healthy. But Marfan syndrome is not like most diseases or cancers. There is little outward atrophy. It strikes violently and randomly. We will have time, until we don’t.
One day, and it’s impossible to know when, I won’t have a father.
He will never stop waiting for me to come home to him. I will never stop wishing for the certainty of more time. But this June, at least, I’ll be with him. We can be together.
He is older now, his body rebelling and his heart beating past its typical life expectancy, once pegged at the mid-40s.