By Emily Klein
“Are you going to have more kids?”
Eric and I were at brunch with friends and I was struggling to keep our eighteen-month old daughter, Joy, from falling out of her booster chair while I connected her feeding tube. It was a dance I did every day, yet still had not perfected.
“Why, do your children need friends?” Eric joked, reaching to steady Joy’s torso so I could program her feeding pump.
Ignoring Eric, our friend waited for my response.
“Why don’t you ask Joy when her gut will start working or when she’ll sit on her own, when she’ll miraculously gain vision, achieve any control over her body or hit even one developmental milestone?” I snipped, tired of answering the same question from friends and family who did not understand our world. I paused. “We’re also not sure if our bed is big enough for another kid.”
Three years before, the decision to get pregnant was easy, less if and more when. I got pregnant shortly after our one-year anniversary and we agreed not to learn the gender. “We just want the baby to be healthy,” we said, as if not learning the sex could guarantee our child’s health.
The morning after my caesarean, Eric wheeled me to the Neonatal Intensive Care Unit (NICU) to meet Joy. Soft, pink skin poked out from a labyrinth of wires running across her chest and belly. Oxygen flowed through clear prongs into her nostrils and a feeding tube reached down the back of her throat. I glanced down and saw that Joy had awakened. My body froze, shocked. Where were the steely blue eyes I’d seen peeking out from other babies’ swaddle blankets? Joy’s eyes were opaque, covered by cloudy, whitish-gray corneas. While in the recovery room the day before, Eric had told me that Joy was having trouble breathing and feeding and that the doctors were not yet sure if she could see. Still, I was not prepared for the baby before me. After several moments, my motherly instincts kicked in and I leaned over Joy until we were cheek-to-cheek. Her skin felt soft–and warm. Mixed with the sterile aroma of the NICU, she had that delicious newborn scent. She felt like mine.
Without specific diagnoses, Joy spent the next six months in and out of hospitals in New Jersey, Philadelphia, New York City, Westchester, and Boston. She held her breath until she turned blue, refused to nurse and quickly became dehydrated during brief stints at home. She required stomach surgery, a feeding tube in her belly, corneal transplants and cataract surgery in both eyes.
When Joy came home, she needed round-the-clock care. Eric and I took turns sleeping on her floor. When she was about nine months old, we decided to move Joy into our bed, where she sleeps still, her feeding pump, cord and tubing patterning our comforter. She still could not roll over and her movements were delayed and jerky. As my friends’ kids crawled and then walked, Joy remained in my arms. The umbilical cord had been cut, but I still felt tethered to my daughter.
The uncertainty was most frustrating. “Her diagnosis may not exist yet,” one geneticist told us. Initial tests for genetic flaws that could cause her eye anomalies came back normal, as had the standard newborn chromosomal testing and all subsequent tests. There was no name for Joy’s syndrome, no way of knowing what other problems might develop, or what could happen if we had another baby. Even though Eric and I had envisioned a larger family, until someone attached a name to her constellation of ailments, Joy would remain an only child.
While we struggled with the unknown and too many sleepless nights, Eric and I found ourselves at an emotional distance. We both wanted Joy to be well and happy, but believed in different routes to that destination. I pushed for new doctors, more tests, new treatments. “They don’t have any answers,” Eric argued back. “Leave her alone.”
Though I was in my early thirties, I knew the option to expand our family had a time limit. And since Joy’s doctors didn’t have any fruitful ideas, I decided that I would try to figure out her diagnosis myself. I googled into the night while Eric and Joy slept beside me, searching every possible combination of symptoms. We knew what her eye anomalies were, and that she could not always propel food through her digestive system. But what caused these issues and why did they occur together? Why couldn’t she control her body? I contacted doctors across the country, watched videos of children with movement disorders, and consulted with geneticists who thought her eyes, gut, and brain problems were probably related, but didn’t know how.
Around the time Joy turned two, I enrolled her in an enrichment program for children with disabilities. Until then, Joy had spent most of her time in medical settings or at home in therapy sessions. I wanted her to get used to being away from me and to meet other kids.
I met friends too, finding solace with moms who were also navigating this largely hidden world of medically fragile children. We spoke the same medical jargon, compared notes on doctors, and welcomed each other back after hospital stays.
I watched one mother, in particular, who had a preschooler with special needs and a younger daughter who was developing typically. As she chased her toddler around the lobby, I was awed by their normalcy. When she knelt down and her daughter gave her a hug, my heart crumbled. I wanted to know what it felt like to be hugged by my child, too.
Before Joy, I would not have believed I could manage a child with such significant needs. Being Joy’s mom meant also being nurse, advocate, scheduler, medical supply clerk, and therapy assistant. She needed a lot, and I gave her everything I had. Could I manage caring for another child – sick or not? Selfishly, though, I also wanted the more common experiences of motherhood – to hold my newborn without worrying that she would turn blue or refuse her next meal, to watch my child sit up, to feed her that first bite of rice cereal. I wanted to know what it was like to just be a mom.
“Do you think we should have another baby?” I asked Eric one evening.
“I would like to have more kids,” he said.
“But we don’t have a diagnosis for Joy.” I clung to these words like a security blanket. “Can we handle another baby? Will a baby take too much attention away from Joy?”
I studied Joy lying between us in bed. For such a small child, she occupied a lot of space.
“And Joy will be starting school soon,” I added. I’ll finally have time for myself.”
“Joy would love to have siblings,” he said, “And we have to consider who will care for Joy when we can’t.”
“That’s a lot of responsibility for a child who does not exist yet. We haven’t even had the nerve to ask our own siblings if they would be named guardian in our wills.”
A few weeks later, Joy’s doctor told us about Exome Sequencing, a test that scans thousands of genes simultaneously. “There is no guarantee we’ll find an answer,” she explained. “But it’s the best shot we have.” The results could take six months. I marked off the days, believing the test would not only reveal Joy’s diagnosis, but also if a second child would have the same problems.
When the day arrived, we happened to be in the hospital with Joy. Her geneticist began, “We got the Exome back.” Her face was blank.
My cheeks burned. “No answers?”
Eric and I stole a quick glance at each other. He shrugged as if to say I didn’t expect anything different.
“What about having more kids?” I asked.
“Without a diagnosis for Joy, we won’t be able to test the baby while in utero for anything specific. Joy’s syndrome might be a one-time fluke, but we aren’t sure.”
As she walked out the door, so did any chance of firm medical guidance. I, alone, would have to make the decision whether or not to have another baby. If we did, I would be like any pregnant woman–following doctor’s orders, cutting out questionable foods and praying for a healthy baby; everything I had done with Joy. This this time, though, I would have an intimate knowledge of what most moms-to-be only fear in the ‘what-if’ scenarios they play out in their heads. Eric had made his decision. Was I willing to jump into the darkness with him? Would my marriage survive if I didn’t? Would it survive if I did?
Soon after, Eric and I met Seth, the father of two boys, the older with significant medical challenges. “Is it strange to raise a normal kid?” Eric asked.
Seth recounted the first time he fed his younger son a bottle. His eyes watered, his voice cracked. “I’m sorry,” he said. “Most parents don’t think feeding their baby is a big deal. But to parents like us, it’s everything.”
I imagined Eric feeding our baby.
“Like any toddler, he’s a lot of work,” Seth continued. “But mainly, he brings normalcy to our family.”
I wanted some of this normalcy. And I wanted it for Eric, too. As I watched Seth pat the tears from his eyes, I decided.
I got pregnant quickly. Eric and I learned the baby’s gender — a girl — and I scheduled another c-section. As my belly grew, so did my anxiety. How will I carry a baby and a three-year-old around? How will I cope with both girls waking at night? Could both of us still stay with Joy during her hospital visits? I avoided all information about the baby’s weekly progress. I didn’t want to be reminded of the in-utero development that must have gone awry for Joy, and would perhaps for this baby also. I stopped myself from daydreaming about my toddler walking beside me, giving hugs, and sharing ice cream sundaes.
Though I wasn’t classified as a high-risk pregnancy, my doctors recommended advanced testing. “Aren’t you relieved?” friends and family asked when the fetal tests came back normal. The results held hope, but were not comforting. Though not as sophisticated, Joy’s tests had been normal, too.
On Joy’s third birthday, a van stopped in front of our house to take her to her first day of school. Eric guided Joy out the front door in her wheelchair. The private nurse the school district provided trailed behind them. As the chair lift lowered from the van, I felt my role in Joy’s life changing. A nurse would now manage her care during the day. Her therapists would nudge her body towards independent movement. Her teacher would plan her activities. New friends would provide entertainment. While Joy was being lifted onto the van, I felt new boundaries snap into place, as if the umbilical cord had, finally, been cut. The aide secured Joy’s chair and we waved as she drove away. I wrapped my arms around my growing belly and felt the flutter and kick of Joy’s baby sister.
Rachel’s first cry was different from Joy’s. It was strong and feisty, persistent. The moment the doctor laid Rachel on my chest, she calmed – as if she had been waiting for that moment, too. When she looked up at me, with sleepy, midnight blue eyes, my anxiety melted away.
Mothering Rachel has been a different experience from the beginning. Every day, she masters a new milestone, each skill rolling into the next like one long, fluid movement. While I celebrate with Rachel, my heart grows heavier for Joy. She works so hard just to hold her head up.
Every morning, we all wake up in bed together. Rachel pokes her head up from my chest. “Dada, dada,” she squeals, flashing a gummy grin. She begins her crawl across our bed. Joy smiles under the familiar pressure of Rachel’s tiny hands against her body. Rachel lingers on Joy’s belly, fingers the feeding tube and reaches for the pump. I gently reposition her body, nudging her forward into Eric’s outstretched arms. Our bed, it turns out, can hold us all – together.
Emily Klein is a writer, wife and mother in New Jersey. When she is not hanging out with her two girls, she spends her time writing about them. Her work has appeared in Literary Mama, The Healing Muse, Monday Coffee and Other Stories of Mothering Children with Special Needs and various parenting magazines.