Imperfect Love: A Mother, a Daughter, and the Unexpected Gift of Down Syndrome

There was never any question that I wanted to be Fern’s mother. I just didn’t want her to have Down syndrome.

Heather House's daughter Fern who has Down Syndrome 1 Courtesy of Heather House
After the doctors left me to process the shocking news of my newborn’s diagnosis, I ranted and sobbed in protest of the unexpected arc of my life. Eventually, though, it was time to nurse Fern.

I held an almost superstitious belief that if my babies nursed from my breasts while I was distraught, they would drink my sadness and it would affect their dispositions for life. I had to get my act together. I decided to take a shower, Cesarean incision be damned.

As the water streamed over my head, I prepared myself to see Fern for the first time since receiving her diagnosis. I recalled a radio program about a well-known quadriplegic man in which he told the story of his mother’s reaction when he was first handed to her. Apparently, the doctor was very cautious, saying something like, “I’m so sorry. Your baby doesn’t have any arms or legs.” But his mother took her baby into her arms and said, “Oh, isn’t he perfect!” And that mother’s belief that her baby with no arms and no legs was perfect and lovable is what made that baby grow into the strong and confident man I had heard on the radio that day.

For Fern’s sake, I wanted to be that mom. I wanted to think my baby girl was perfect. I wanted to have that mom’s cheery disposition and a can-do attitude, to be strong enough to love Fern unconditionally. I wanted to stride confidently through the NICU to where Fern lay in an incubator and say with a big smile, “Isn’t she perfect?”

But I was not that mother.

Instead, I was the puffy-eyed mother with damp, unruly hair who dragged her wrecked body through the NICU and approached the incubator cautiously, reluctantly. I sat down in the recliner provided for parents and waited while the nurse rearranged the tangle of wires and tubes attached to Fern. Then she handed Fern down to my waiting arms.

I blinked back my tears of disappointment, forced a smile and said, “Hey there, Baby. How’s it going?”

Then I began to inventory all the things that were imperfect about my daughter. She thrust her tongue. Her almond-shaped eyes looked startled. Her skin was mottled and yellow-green in color, and her arms and legs splayed in all directions.

Geez. She looks like a critter from Star Trek.

Far from perfect and lovable, I found Fern to be weird and unknowable.

I told her in a quavering voice, “Well, you aren’t what I was expecting, but it’s all going to work out fine. Mommy just needs to get used to her new reality.” I tried and failed to nurse Fern, then placed her back in her incubator where I changed her impossibly tiny diaper.

As I raised the railing and prepared to leave, Fern’s nurse approached and said, “Looks like you’re an old pro.” She knew that I now knew, and there was nothing to do but force another smile and return to my room.

I put myself on a three-hour rotation, and spent the first ninety minutes with Sylvan, Fern’s twin, who should have been easy to love. He was beautiful, fine-boned and pink. He nursed heartily and slept contentedly. He had amazing deep blue eyes and the cutest pointy chin I’d ever laid eyes on. But I was too distracted by the implications of Fern’s diagnosis to properly love him either, too confused by the feelings of guilt already plaguing me. How could I love Sylvan if I could barely stand to look at Fern? Was it okay to still nurse Sylvan when it was so difficult for Fern to latch? Shouldn’t I spend every possible minute with Fern, because she was the one in the NICU? Or maybe I should spend more time with Sylvan, because it wasn’t fair to ask him to live in the shadow of “Fern Has Down Syndrome” from day one.

I knew that being the mother of twins was going to be hard, but this unexpected turn of events created an emotional landmine. Holding Sylvan against my chest, the weight of him so much more substantial and taunt than Fern’s floppy, hypotonic body, I found myself withholding kisses to his downy head out of fairness to Fern. The guilt I felt for essentially rejecting Fern on some level was compounded by the guilt I felt for being drawn to Sylvan.

It would be weeks before I realized that withholding love from one person does not create more love for another.

When Sylvan’s time was up, I spent the next ninety minutes with Fern in the NICU. Right from the start, I realized I couldn’t fool Fern.  Even at only a few hours old, Fern locked eyes with mine and commanded I take notice of the intelligence in them. Intelligence I was not expecting to find.

She sees me. She is discerning. She knows who I am among all these nurses.

Although I was having difficulty stepping into the romanticized role of Loving Mother, Fern seemed to easily accept that I was her mother and trusted that I was the one who would care for her. Despite the dozens of people handling her every day, she had imprinted on me, like a baby duck. Fern’s responsiveness to me triggered an instinctive desire to do everything necessary to protect and nurture her.

During her stay in the NICU, I worked with every lactation consultant on site to help Fern learn to nurse, insisting she not be offered a pacifier or a bottle. When it became apparent Fern would not be able to latch to nurse, I insisted on being the one to feed her around the clock, first with a syringe and then with a bottle. I changed her diapers, chose her tiny preemie outfits and consulted with the doctors about every aspect of her care. I just kept showing up, giving her what I had to give. It was a kind of “fake it until you make it” approach.

In return, Fern perked up when she heard my voice as I approached her incubator. She allowed me to comfort her when the nurses pricked her heels over and over again to draw blood. She looked at me in wonder when I sang, and she held my finger as she dozed on my chest. We were warm together in that chilly hospital, getting to know each other through the osmosis of our shared heat.

Resting with Fern on my chest, I thought about the interview with the quadriplegic. The way he told the story of his mother, recalled it in such vivid detail, it was as if he was actually there. Of course he was there, but he was just a newborn and he could not have possibly understood what was going on.

Or did he?

There was never any question that I wanted to be Fern’s mother. I just didn’t want her to have Down syndrome and, for reasons I am still sorting out, I lacked whatever was required of a person to feel instant love for a child who has special needs. So while I lived in a confused place of wanting, but not really loving, Fern, I promised to never let her see me mourn her diagnosis, lest she think I was mourning her existence.

Heather House's Book Cover This Is What Perfect Looks Like Heather House
If Fern does have any recollection of those early days, her memories won’t be of a mother gushing with wonder and exclaiming, “She’s perfect!” But I’m pretty sure she will understand my intention, the effort that stood in the place of love. The unexpected situation demanded maturity and resolve, a kind of strength I was surprised to find I had. We may not have had the dreamlike mother-and-child bond you see in tear-jerking commercials, but our now powerful and consuming love is made from the same stuff that holds together marriages and forms the bedrock of friendships that last a lifetime. The mortar between this uncertain mother and her vulnerable baby was simply the will to try.

Excerpted with permission from This Is What Perfect Looks Like by Heather Hall House ©2016