This summer after I read the beautiful memoir, Girl in Glass: How my “Distressed Baby” Defied the Odds, Shamed a CEO, and Taught Me the Essence of Love, Heartbreak, and Miracles (Bloomsbury), I had the opportunity to ask its author, Deanna Fei, a few questions. Ms. Fei, also the author of A Thread of Sky (Penguin Press), details the frighteningly premature birth of her second child at 25 weeks, and the very unexpected public aftermath that changed her family’s life as it was covered in the media widely.
Out of nowhere it seemed, one year after the baby’s terrifying birth, when the family was finally enjoying being together and healthy, the world became aware of the infant’s many medical interventions; the CEO of AOL, Ms. Fei’s husband’s employer at the time, cut employee benefits, citing the expensive premature births and care of two babies under its insurance. One of these “distressed babies,” as they were called and would become known, was Ms. Fei’s.
Ms. Fei’s writing on her daughter’s birth, her tenuous hold to this world, and Ms. Fei’s feelings as a mother shocked, devoted, often horrified is moving; every parent will relate to her fear and love, and all else which moves between the two. The book explores expectation and reality, how they manifest in our everyday lives and how we suddenly face extremes for which we are not prepared. Her insight into the unexpected turns of strength and weakness as well helps Ms. Fei tell a complex story of compassion as she touches upon our shared human history of caregiving.
I asked Ms. Fei about motherhood, marriage, and how speaking out on an experience that resonated with so many others helped shape her book.
You have said part of the reason you wanted to go public with your story was to expose the myth of the perfect pregnancy—that women are supposed to “naturally” be able support easy pregnancies, and when something goes awry, it is the mother’s “fault.” And even though the literature supports there being little to no reason for premature birth – or miscarriage – in most cases, women will still blame themselves. This myth of perfect motherhood extends past the myth of an “easy” conception; past pregnancy; and into motherhood itself, where we give little leeway for mothers to experience feelings outside of joy and mild irritation. Society blames women to a significant degree when mothers have a difficult time managing the emotions of motherhood. Do you feel on any level the extension of this similar guilt and blame into your years now as a mom of young kids, and if so, how do you handle it?
DF: Yes, in the same way that women put tremendous pressure on ourselves to do everything right in pregnancy and childbirth, we often berate ourselves for not being perfect mothers. And the expectations for what mothers are supposed to do keep expanding. We’re not only supposed to be perfect nurturers, we’re supposed to be able to mold every aspect of our children, from their eating habits to their self-esteem, from their language skills to their test scores. All of which can make the stakes feel absurdly high. If I let my kids eat too many snacks, am I putting their future health at risk? If I lose my temper, am I scarring them for life?
For me, the guilt and self-blame get compounded by those long, dark months of watching my daughter struggle on the edge of life and death. I tormented myself with everything I might’ve done wrong to cause her premature birth. I used to tell myself that if I could just bring her home one day, I would somehow make up for everything that she suffered. Also, when she arrived, my son was only 13 months old, so there’s always a part of me that wants to atone for all those times when he suddenly had to make do without me.
That sense of helplessness is probably the worst feeling a parent can experience, but it can also be profoundly liberating. Ultimately, we don’t control our kids’ destinies. All of it – the uncertainty and exhaustion and frustration and chaos and despair – is part of the journey. As mothers, we all need to be more forgiving of ourselves. At the end of the day, if my kids feel safe and loved, that’s enough.
You mention in the book the differences between the ways you and your husband dealt with the crisis of your daughter’s early birth at the beginning and the differences between your feelings and reactions ongoing as you manage the new normal of your family. Having young children adds enormous strain on a marriage for most couples, how did you and Peter deal with each other in those early days to help and not hurt each other, and how do you manage stress as it comes up now?
DF: I always used to pride myself on being strong and self-reliant. But after my daughter’s birth, nothing terrified me more than being alone. Because that’s how the catastrophe struck: one moment, everything was fine. Then my husband left me alone in the dark, and suddenly my child slipped away from me. For the first time in my life, I found myself wanting my husband to be a superhero. I wanted him to save our daughter. I wanted him to rescue me from that terrible limbo of not knowing whether she would survive another day—or whether she should.
He and I were always very close as life partners, but facing a life-and-death situation day after day strengthened our marriage like nothing else could. And it forced us to find a new balance. I needed to lean on him, but I also needed to let him have moments of weakness and anger and fear and doubt. We each needed to extend a hand whenever the other faltered. And, even when there weren’t enough hours in the day to care for one baby in the hospital and the other at home, we tried to find moments to simply be a couple again—even if that was just me leaning against his shoulder by our daughter’s incubator while we took turns holding her hand.
Now, in our daily life with a two year old and a three year old, it’s easy to get caught up in the ordinary stresses of life. We bicker like every couple with small kids. But we also know that the foundation we’ve built has already endured one of the hardest tests life can offer.
Most mothers I know agree that having children changes your perspective on just about everything—we can’t watch movies we once watched because they now make us cry. We worry about things we never thought about. Having lived through the possibility of literally the worst thing in the world happening to you, do you feel you worry more about your children and family than you did when you had one child? Do you work on staying in the moment or do you find that having been through a terrifying crisis makes it easier to do so?
DF: Once you’ve had a child on life support, the experience never really leaves you. At any given moment, an ordinary anxiety about my daughter can take a terrifying turn. With my son, I used to worry about every milestone just because that somehow seemed to be my job as a mother. With my daughter, I never knew if she would smile or walk or sing until she did, and that carries a special burden of worry and fear.
But I also carry with me some hard-won perspective. As parents, we want to protect our kids from all the suffering in the world, but sometimes we can’t. Life is inherently fragile and uncertain, and that’s part of the beauty of it all. The greatest challenge for all of us is to live in each moment. To make peace with the past and accept that the future holds no guarantees. To allow ourselves to be awed by a child’s resilience. Every time I see my daughter laugh in the swing with the wind ruffling her hair, I know what it means to feel blessed.
The health care portion of your story cannot, obviously, be separated; how did you decide how much of your book to dedicate to talking about the problems and challenges facing families and health care as a whole in this country?
DF: Yes, my daughter’s story became deeply entangled with larger issues about health care, insurance, and privacy that affect all of us. And in researching and writing Girl in Glass, I came to see that how we care for a child like my daughter is a reflection of our fundamental values as a society. How we treat our most vulnerable citizens is a measure of our basic humanity. These issues are so rich and fascinating and important that they could have filled a whole separate book. But Girl in Glass is, above all, my personal journey to making sense of my daughter’s place in the world, and that had to be the guiding principle of the structure of this book.
What will your next book be about?
DF: When my daughter was born, I was working on a new novel about a female journalist stationed in post-invasion Iraq as the country descends into civil war–who then loses her own mother to suicide. After my daughter arrived, I was too traumatized to even contemplate writing another word. But in many ways, my daughter taught me how to face down my worst fears. And the characters still haunt me. So I think I’m finally getting ready to dive back into this project.