None of our lives is perfect. All of them are irreplaceable and have worth.
Imagine opening up New York magazine to find an article from your mother writing that she wished you were dead. When he can read, a little boy named Dudley will face that reality.
Jen Gann, the parenting editor of New York, recently wrote a highly promoted cover story about her toddler Dudley, the focus of her wrongful-birth lawsuit. Dudley has cystic fibrosis (CF), a genetic disease that causes damage primarily to the lungs and digestive system. It’s expensive to treat, requires hours of treatment daily, and shortens the lives of its victims. Gann writes openly that if she could have ended her son’s life, knowing what she knows now, she would have.
“You can’t discuss what happened to me without discussing abortion,” she writes.
Her lawsuit, she claims, is about the betrayal she felt when learning only after Dudley was born that he had CF. She had genetic testing, she explains, but information about the risk of CF was not communicated to her in such a way that she could have pursued more testing to determine whether her son could have the disease. She lost the opportunity to “protect” her son by killing him before he took his first breath out of utero.
At one point Gann muses, “For the pro-lifers who oppose wrongful-birth suits, this paradox — what does it mean to fight for someone when what you’re fighting for is a missed chance at that person’s not existing? — is reason enough to eliminate the legal pathway altogether.”
So for Gann, losing the “chance” to abort her son was a missed opportunity. Those are grim words to process.
I’ll be honest. I had to read her piece several times, as I had difficulty reading it in one setting. Each time I started again, I was filled with anguish and anger.
How horrifying that Dudley will one day grow to learn that his mother wished he were dead. That she wishes she could have had another kid who was “normal,” instead of living with cystic fibrosis and experiencing each day with her son as a gift.
In the article, which reads like a woe-is-me-my-life-has-been-disrupted-by-CF pity party, she states that she “hates” mothers like me. Mothers like me who didn’t take the risk of prenatal tests and gave birth to a child with cystic fibrosis. I would assume she hates me doubly as after my first son, Gunner, was born with CF, I went on to reproduce (gasp). My fourth child, my only daughter, Gracie, also lives with the disease.
Well, I’m okay with her anger, because I’m angry too. Angry that she would feel that my children should have been eliminated in the womb because of their genetic code. That attitude is eugenics at its finest, and I’m angry that someday soon I’m going to have to explain to my children why 90 percent of those like them are killed in the womb. It is bigotry to say that some lives are worth less than others, and I hope someday we can accept that no life is perfect but that all lives are irreplaceable and have worth.
Gann writes that “given the choice, if one existed, I would have Dudley another way: healthy.” But, in fact, that could never be the case. The beautiful person of Dudley has been forged by him and his family in the act of facing the adversity that CF brings to them. In walking that path with my own children and husband, I know how powerful, painful, and beautiful that life can be. Eliminating all people who potentially carry disease erases our very humanity and paints a false picture of “perfect.”
I understand the pain that Gann lives with, as every day cystic fibrosis tries to savages the little bodies of our children. But as mothers, we are called to be strong enough for them to fight, to make sure that they adhere to the two to four breathing treatments needed each day, that the pills get taken and insulin injected, that the calories are consumed, and that every possible surface is wiped down with Clorox wipes.
I didn’t ask or want to have two children with cystic fibrosis. I know that my eight-year-old, who recently asked me the dreaded question “Will I die?,” would choose in a heartbeat to rid his body of CF. But I also know he would choose to live.
My children sometimes struggle to breathe without coughing and to get the nourishment they need. They may die a premature death. Not a day goes by that I don’t think about it.
But my Gunner and Gracie will fight with my husband and me alongside them for a life well lived. No amount of suffering overshadows the value and the wonderfulness of experiencing life with them.
To Gann I say, “You gave your son his life. His life will be hard but it will be his, filled with joy, happiness, and sadness, like all of ours. Saying he should have been aborted is giving up. You have to be strong to fight for him. Eliminating a child in the womb is not fighting for the child. It’s killing a child.”
People are not born with expiration dates tattooed on their feet. No one knows how long any of us has on this earth. Our society has become prejudiced against people who are perceived as disabled in any way, and they are deemed unworthy of the investment of love and resources. The value of human beings exists not in how much money they have or in their abilities, their physical beauty, or their social standing. We must value every life because it is unique and irreplaceable.
I hope that all children with cystic fibrosis have someone in their lives who lets them know that they are worth the effort. Life is hard enough without being told that you should never have been born.