About fourteen months ago, I wrote a post called Listen to Life. The post was a difficult one to write as it was about my Sister Ceara welcoming her little girl H who born with an ear condition called Bilaterial Microtia. Ceara wanted me to publish those words then, and I did, and the response was wonderful. Here we are, a year-plus later. Ceara and her family have since moved to Charleston, South Carolina, a transition about which Ceara herself mused in a wonderful guest post here.
In March, my little niece H turned one. She is a delectably chubby, developmentally normal, blue-eyed beauty. Thanks to the Bahas she wears (a pair of hearing aids on a headband), H has been able to hear and her speech has been evaluated as beyond the level of her chronological age! She's a smart little cookie; not that I'm surprised. All of that said, it's been a tough road for my sister and her family. Right around H's first birthday (depicted above), Ceara wrote the following words about H's birth. She asked me to share them today here, on the heels of Mother's Day. I have no doubt you will find these words as brave and beautiful as I do. Please take a moment today to leave a comment. Doing so would mean a great deal to both Ceara and me. Hope you all had a great Mother's Day!
one year in
by Ceara Donnelley
Not long ago I was a fairly typical sight on New York’s Upper West Side: weary and waddling mom-to-be pushing her first-born to and from preschool, at once full of and weighed down by life. That buzzy excitement that starts around the 37th week was there, but unlike the first time around, so too was awareness of what was to come. My son’s birth, I’m told, was not entirely smooth. If you ask my husband, it was downright scary, but hormones and an epidural colluded to obscure the reality of events in the delivery room, and so my memories of my first labor are, on the whole, happy. There was pain, yes, and it would have been nice if R had not been “sunny side up,” and I could have gone without the oxygen mask and plummeting heart rate, and I really wish I had thought of something better to say at first glance of my firstborn than “Yikes, look at his conehead!” But in the end I had a story to tell and a healthy baby to hold, a sweet boy who latched like a champ and whose alien-shaped head normalized in mere days.
As my daughter’s due date approached, I had that keen maternal sense that this labor would follow a similar pattern. I was feeling the same early contractions, real contractions, that I’d had with R; they would come and go, which I now knew likely meant she was face up, the position preventing her head from properly engaging in my pelvis. I fixated on this possibility, that she might not flip like my OB promised she would. I researched yoga poses and herbs and spent the last 48 hours of my pregnancy prone on a giant exercise ball, determined to make her move. When time finally came to head to the hospital I was fairly calm. My husband, N, and I giggled at the front desk and I was admitted to the delivery floor right away. I downloaded a new book, The Starboard Sea, and read half of it overnight while N dosed on a chair in the corner. As I read and labored I watched my contractions rise and fall on the monitor strapped to my enormous belly. Aside from a fairly excruciating hour-plus delay between my request for an epidural and the anesthesiologist’s arrival, it wasn’t that bad. My OB, tall and cool, frank and funny, arrived in the morning and casually announced I was ten centimeters and ready to push. While we waited for the nurse, she and N and I talked hockey, and raising kids in New York, and whether you could reasonably combine those two things.
The nurse arrived and I started pushing. Within what felt like seconds, she was out. It was all so swift and smooth, the pushing. She was indeed face up like her brother, but my body had figured out how to handle this kind of arrival (or departure, really). Until writing this, I didn’t remember that I did, in fact, cry when she was born. Before I knew. There were tears of happiness at having had my baby girl. I did not call her a conehead.
After throwing the baby on my chest the nurses whisked her away to be cleaned up and checked by the peds team, on hand because she, too, scared us with an erratic heart rate. I told N to go over to her and tell me what he saw, what she looked like. He was the first to notice. Or, more likely, the first to say it. “There’s something up with her ears.” I chided him, the conehead comment fresh in my mind. “Oh N, she just squeezed through a birth canal. I’m sure they’re just smushed.” “No,” he said. “There’s something wrong.”
Within minutes N was in the corner on his iPhone, diagnosing our daughter before anyone else had the chance to. Microtia, he said. Atresia. It meant nothing to me. The nurse brought her to me, and I held my baby girl, still disbelieving that anything was actually wrong. Before I looked, really looked, at her ears, I sincerely thought that if anything was wrong, surely they’d be able to fix it before it was time to bring her home from the hospital. But then, I looked. There wasn’t just something wrong with her ears—she barely had ears. More alarmingly, there were no ear canals. Just two little peanuts on either side of a perfect little head, so perfect on its face that it seemed to mock the malformations on its sides. I grew quiet.
I’ve come to see the way I handled this news, both initially and in time, as part of a pattern of how I deal with trauma more generally. I did not cry right away. I was stunned, and my OB and the nurses knew it. I didn’t hear a medical term for H's condition from anyone other than N in that delivery room. My OB said she had seen this once before, in one ear, and that it was fine, just fine, the boy could hear, he was fine. At that point, though I had clearly seen that my baby did not have ear canals, I hadn’t even thought of hearing loss—probably as good an indication of any of the fog I was in. No, that easy logical leap, that without ears, without ear canals, it might be difficult to hear, had not yet been made. All I knew was this baby of mine did not come out how she was supposed to.
My phone buzzed in the bed beside me, my sisters and mom eager to hear my tired but elated voice announce she was here. My OB cleaned me up, the nurse left to tend to other moms, and N went to secure the private room we would now need more than ever. It was not until I was alone with her, with H, that I shed my first tears of grief, and guilt. In those first minutes of H’s life, I clutched her and breathed her in and told her I loved her (and I did), but I also looked at her with devastation and bewilderment. When the nurse came back in, a wonderful woman with whom I’d so recently been exchanging pre-labor banter, I tried to blink back my tears and smile. I was so ashamed that she had found me crying over my imperfect baby, over something I somehow still thought was a superficial defect. She didn’t say a thing, but I saw in her eyes that she knew my tears were not happy ones. That she didn’t try to reassure me was my first clue that this was very real.
Somewhere I found the strength to call my sister, Aidan. I think I had already sent her a confusing string of texts that began before I knew there was something wrong but then took a turn. She answered with her crisis voice—a combination of concern and resolve. “There’s something wrong with her ears,” I told her. “But she’s okay, right?” “Yes, I think so, but she doesn’t … have them.” “But she’s okay?” she asked, then stated, over and over. And in retrospect, that was the right question—because she was okay, and Aidan might have been the one to make me first start realizing that. I rattled off the stats—8 lbs 5 ozs, 19 ½ inches, 9.9 Apgar score. I know now this was no small thing. H was the beginning of my education.
Those days in the hospital are somehow both hazy and crystal clear. Hazy when I look back casually; clear when I stop to remember, as I am doing now. I suppose that is my mind’s way of protecting me from reliving the pain and grief and guilt I felt when H was first born. It has done the same thing with the months my dad was on hospice, and the week before his death, and the death itself. If I will myself to, I can remember. I don’t often do that, though. I have learned I am a forward-thinker. I am resilient, a therapist once told me. It is a good thing, for the most part. But every once in a while I like to dip back into the memories, the wrenching sadness. The seeds of some of the most beautiful parts of life are in there.
When H was born, I thought I knew a thing about hardship, about raw deals. My father’s death had shattered the illusion of such thing as a charmed life. When cancer claimed him at age 66, I did not rail against God or the universe. I chalked it up, as he did, to our being biological organisms, susceptible to the unfeeling whims of nature. To some that is a terrifying explanation of illness and death, but to him and me it brought comfort. There is little we can do to prevent, in my dad’s words, Momma Nature from raining on our parade. So, there is no point worrying too much about the rain; when it comes, scramble for cover, or try to enjoy the shower.
In a way I am only now beginning to grasp, in an utterly random but profoundly meaningful way, my father’s death prepared me for H’s birth. When H was born, I did not curse the universe. I did, I admit, curse the odds—how did this thing, this 1 in 20,000 thing, happen to us? But I didn’t dwell too much on that, and I didn’t spend time blaming myself, as everything I read suggested, by way of telling me not to, I should. That’s not to say that I embraced this new reality in some Zen way. I had my moments, times of solitude, or with N, when I was wracked with grief and heaving with sobs. Little things pierced my armor: the boy at the pediatrician’s office innocently commenting to his mother that that baby hadn’t grown her ears yet; the thought of my daughter having to wear a headband every day of her life until she was at least five, and probably older (before H I hated headbands on babies, favoring the classic barrette for girls if they had enough hair to hold it); the realization that every time I held my infant daughter, hugged or cradled her, I’d have to either move her Baha hearing aid around on said headband, or tolerate and subject her to squeals of feedback.
But other little things sustained me. My son, not yet three, noticing his baby sister’s ears for the first time: “Ooooh, look at her baby toes! And look at her baby fingers! And look at her baby ears! … but they’re different.” “Yes, babe, they are different.” “Oh.”—and not another word about them since, except to ask when the other babies he sees are going to get their Bahas. Actually, it is often my son’s delight in his baby sister that sustains me. The way he mimics the patterns our speech therapist has taught us to use with H: “Ba ba ba ball! Ca ca ca cat! Meow!” The way he talks to her in an extra loud voice during their brother-sister baths, when she can’t wear her Bahas: “BABY SISTER! CAN YOU HEAR ME?!?” (She can, her smile shows). The way he wrestles with her just as he would with any baby sister—or brother, for that matter—squealing Bahas be damned. The way he sees her as she is: an adorable, spirited, sometimes annoying little sister. Who is completely perfect in her own way.
And, of course, H sustains me. Really, it was she who did from the very beginning. In the hospital I felt panicky and unsettled unless she was close, reminding me that in almost every way she was just like any other newborn who needed to nurse and sleep and be held. And as H has grown and developed over this first year of her life, I have learned that if ever I feel that rising tide of worry about what all this will mean for us, for her, I need only go to her to know she is okay. I can tell by the uncommonly wise look in her big blue eyes, by the way she dances to her big brother’s songs, by her clear and strong voice saying “Mamama” and “Dadada” and “Aaaaht” (cat) and “Bubu” (bottle), all before her first birthday. Aidan was right—she is okay. And so are we.
At the risk of sounding preachy and trite, what I have learned this past year is that anyone who has a healthy baby—myself included, twice over—is truly lucky, a firsthand witness to nature’s most amazing miracle. Before H was born, I was one of the many people who turn away from disability and defect. I guess I didn’t have any reason not to. When I was pregnant and had an opportunity to make a wish, I did so nominally for a healthy baby, but secretly for a cute and smart baby. If I do this all over again, I’m still going to want a cute and smart baby; who doesn’t? But if I get a healthy one, and by healthy I mean able to breathe and eat and grow and learn, in whatever form, at whatever pace—I will feel genuinely lucky. I will thank Momma Nature for her latest miracle.
For more information on Microtia/Atresia, click here.
For more information on Baha, click here.
Beautiful, no? Any thoughts or reactions? Are you willing to share bits of your own birth stories here?