Culture

Loving Dudley: Jen Gann’s Story of Having a Son with Cystic Fibrosis

(Photo: Marek Pilař/Dreamstime)
Let’s let moms be moms, without the guilt.

Jen Gann describes herself as “a mother whose biggest mistake was becoming one.” She describes Dudley: “My son has blue eyes, curly blond hair, slightly crooked teeth. He’s daring, most of the time. He’s afraid of doctors and anyone in a flapping coat.” He also has cystic fibrosis.

I want the people I hate to know these details about him. I want them to be able to smell his soft breath in the morning, just before I strap a mask over his face so he can inhale medication. I want them to fathom telling a child no amount of treatment can make his disease go away, that people with CF are so likely to pass bacteria between each other they can’t be in the same room, that most men with CF are infertile, that every drinking fountain holds the risk of a lung infection. I want them to feel all the moments in a life affected by this disease and experience what it’s going to be like, to be Dudley. I want to take all the pain and disappointment he’ll have and drown them in it.

It’s a heart-wrenching piece in New York magazine, one that makes you ashamed to even use the word, not being the mother who describes herself as “having given birth to a child with a terminal disease.” It’s so intrinsic to her identity as a mother. How could she not feel as she does? And yet, it’s hard to read the piece without praying that she could be freed from the chains of that albatross — her anger — in the middle of her suffering with her son.

She and her husband are currently plaintiffs in a “wrongful birth” case. She explains:

The women who willingly made choices that were never presented to me and chose a child’s suffering: Sometimes I hate them.

I also hate the women who were supposed to care for me. I hate the faceless people at the lab. . . . While my family’s life is now shaped around a disease I would never willingly bring into the world, we are a family because of them — unwittingly, they gave me my most precious gift. I hate them for making me a mother whose biggest mistake was becoming one. . . . Logically, I know the guilt belongs elsewhere. But, biologically, I feel a deep responsibility, a primal and uniquely female pain.

“This pain is rage and despair. It is every modern woman’s worst nightmare,” Kathleen Buckley Domingo, director of the Office of Life, Justice, and Peace at the Archdiocese of Los Angeles, says about the piece. “We schedule and plan every detail of our lives so that when something goes awry, it becomes a great source of embarrassment.”

Think about that, though. “This is where we are in the world: The life of a toddler with cystic fibrosis is a source of embarrassment,” Domingo says, adding:

Jen Gann’s piece is one very long apology. She is apologizing for not being smart enough to get a second opinion, apologizing that her time is now tied up with treatments rather than smarter activities, apologizing most of all that her son exists and takes up time and space on this earth that would have been better allocated to a healthy child, the one she intended to have all along. Now that abortion has been normalized and made readily available in our culture, women no longer feel compelled to provide a reason for obtaining one, but for not obtaining one. The overwhelming sense in this piece is that Ms. Gann feels the great need to apologize for the life of her son. You feel the very clear pain she is experiencing, the huge burden she is under.

Gann is a witness of love — if only she’d be free from unrealistic cultural expectations to do everything possible to not have anything less than the perfect life, when no one among us actually has that, even as some crosses weigh so heavily and are so brutal.

Gann should be the kind of woman we celebrate, as she gives of herself with more love than she knew possible. Instead, she feels wrong, so much so that she is going to court because her son is alive. She is angry that she is a mother, while she is clearly in love with this suffering son of hers. Don’t we want to be a culture that only nurtures love and that sees no life as wrong, no matter how challenging?

Gann writes: “There’s no escape from knowing that the opportunity for mercy quietly slipped by and that something as idiotic as a clerical error is responsible.” There’s mercy in love, in the embrace of a mother and child, in the giving they inspire. Life can always be mercy. It’s why the current pope so frequently appears to be begging people to go to the peripheries with self-sacrificial love. A mom who feels such pain from even being a mother is on the periphery in a culture that has so devalued the motherly love that should be a beacon for the rest of us.

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