On December 31, my
daughter was born after a complicated pregnancy my doctors did not expect her
to survive. It has been hard work for her to live, and she is still–more than nine
months later–in the hospital, though we hope to bring her home soon. Last
weekend I stopped by the local baby superstore on my way home and was struck by
how much our newborn’s story has diverged from the dream the store is peddling.
Margaret Grace’s metal hospital crib is a far cry from the nursery suites of
Buy Buy Baby. 

 

No one dreams of
giving birth to a medically fragile child, but I was–in some ways–prepared for
the experience of the Neonatal Intensive Care Unit. Nine years ago, my
sister-in-law came down with toxemia and had an emergency cesarean at Baptist
Hospital in Nashville. At twenty-eight weeks, Mary Harriet arrived
weighing one pound and three ounces. She could fit into my brother’s two hands.
The nurses in the NICU said she was the smallest baby they’d seen. When I was
allowed to see Mary Harriet a week later, she had not grown. In fact, she had
dropped a few ounces due to the extra strain of being outside the womb. Her
jaundiced skin was see-through; there was no fat to disguise her veins and
organs. She looked like a baby bird.  

 

My brother introduced
me through the small, circular door in her incubator. He showed me how to put
my arm through it and cup my hand around her head, not quite touching her, to
give her the comfort of embrace without the trauma of touch to her
underdeveloped skin. When she heard her parents’ voices, she’d turn red and try
to cry. She wanted to be near them, to be held, but her skin couldn’t take the
sensation. It would take minutes for her breathing to recover once she was
upset. Every day, her small lungs fought for enough oxygen to keep living and
growing. She seemed determined to get out of that box and into her mother’s
arms. At the time I was on summer break from seminary in New York City and
still recovering from what I’d witnessed firsthand on 9/11. I only saw a world
full of suffering, but Mary Harriet seemed to think there was something on the
other side of her box that was worth the struggle. 

One day, I met my brother during his lunch break in the NICU. Standing in the same hospital where we both first greeted the world, I was struck by how much all three had changed. I asked him what he thought Mary Harriett was thinking in that box all day. Did she wonder what the point was? He chuckled a bit at the suggestion that his daughter was a philosopher and said he was pretty sure she was just concentrating on how to take the next breath or get the milk from the feeding tube through that stubborn stomach. Then he sat down next to her incubator and put his face up to the door and began singing her songs and telling her about all the things they would do together when she grew up. While I was wondering whether Mary Harriet would ever digest enough milk to help her grow out of the baby bird stage and into a human being, my brother could see her as a young girl he’d take to Titans games and teach to dance. He even included me, promising that I’d teach her to read Shakespeare and to take no crap from men. 

 

On my last visit to the NICU before I left to return to New York, I was able to hold my niece. She weighed two and a half pounds, almost as much as the equipment attached to her. My brother sat in the rocking chair beside me, telling me about her progress, about how she was gulping down two bottles a day on top of her feeding tube, and how she would try breast-feeding in the next day or two. He also told me what he expected the next few months of her life to be like, and then described what she’d be like months and years down the road, when I’d come back for visits. 

 

From the moment Mary Harriett was born, he’d been imagining her life. As I looked down at the life cradled in my hands, I suddenly saw a resemblance to my brother and not just translucent skin wrapped around fragile bone. I believed that each story he told added another ounce and another day to her life, and I went back to my graduate studies in theology prepared to imagine another world where, over the cracks and fissures of this one, everyone belongs. What has sustained me for nine years in New York City and six years in ministry is the power of stories to connect, to reconcile, and to heal.    

 

My niece is now a healthy little girl, but I’ve learned during my own daughter’s time in the NICU that there are some doors I need to shut in my imagination. There are some plotlines I must ignore. When circumstances force me to go day by day, “Don’t go there” becomes my refrain. Last weekend while shopping at a Buy Buy Baby store in Manhattan, the mantra in my head took on a new bent: “Don’t go down that aisle.” This mommy megastore is full of booby traps for the mother of a sick child. Much like a worst-case scenario, each aisle is a potential detour into despair that goes nowhere except to another aisle in a maze of “what if’s” and “what should have been’s.”   

 

Until I walked inside, I was eager to shop there, excited that my daughter, Margaret Grace, finally needed things a hospital couldn’t supply. But the more I searched, the more I realized the big-box store doesn’t carry what she needs-special thickeners for milk to prevent severe reflux, unlined bibs to allow for breathing through her tracheostomy underneath, a positioner to help with tummy time despite the tubes. What they do have is a lot of is plastic stuff plastered with peaceful images of a mother and/or child. “All a baby really needs is cloth diapers, soap, and a nipple.” Or so my grandmother taught me with my now th
ree-year-old son, James. Sometimes the products we buy don’t make our reality any easier; they just remind us how far off we are from the dream. One of my greatest fears with the tracheostomy was how small my world would become as we retreat into a sterile house and a schedule packed with specialists. My trip to Buy Buy Baby made me understand that my world is not shrinking; it is expanding, pushing past the plastic illusions into a place that is, while painful, less isolating than perfection.  

 

Aisle by aisle, I realized the narrative the store is selling excludes almost all of the people I’ve come to know and love in my life as a pastor and especially as a friend to other NICU moms and women in high-risk pregnancies. Milk supply, colic, sleep schedules, potty training: such topics I forgot the moment I left behind the Mommy and Me meetings when my son, James had outgrown them. But how can I forget the themes I’ve recently learned: disappointment and readjustment, joy in the midst of grief, and the strange way that suffering can make our eyes more open and our hearts bigger than before…back when we somehow believed our love could be managed with a little bit of forethought, smart purchases, and a lot of good luck? I left the store with a Boppy, “rated number-one baby product for the seventh year in a row.” It’s meant to help a mother support her child while breastfeeding, and it’s shaped like an overstuffed hug. My nurse said we could use it to give Margaret Grace enough height to clear her trach while she lies on her belly, which should help her breathe more deeply. If it works, I’ll send in my endorsement for year eight, along with a new photo for the packaging: one of a baby floating on it like an inner tube, paddling through a sea of plastic tubes and wires, with a smile as big as she is.   

Beth Waltemath is a writer and pastor who received her M.Div from Union Theological Seminary. This essay is adapted from journal entries posted on the CaringBridge site of Margaret Grace Waltemath Lewicki and first appeared at www.chapter16.org, a digital language and literary program of Humanities Tennessee.