Photography by Alice Corey

"Esmé Would Stop Breathing, And I Was Calm"

Sometimes I wonder a bit if the PTSD actually originally stemmed from my daughter’s birth, from the whiplash of those few moments of holding her before everything spiraled out of control, from having to discharge myself six hours after her birth, against medical advice, so that I could be at her side in a NICU ten miles away from where she was born. We know NICU stays can cause trauma, PTSD, in parents.

But, either way, that wasn’t the worst of it. The worst of it came months later, walking through the doors of an E.R. with her limp blue body in my arms. The worst of it was Esmé's oxygen numbers nose-diving as my sister, my husband, and I were pushed out of the E.R., shuffled down the hall to a small room where we could hear them calling for infant crash carts.

The worst of it snuck in during the weeks after, not knowing if she’d ever wake up again, be herself again.

And then, a few months after that, as the seizures set in, the worst gained a shape: plowing through several days of every week confined to my bed, Esmé in my arms, again living in that cycle. Sleeping child, waking child, shaking blue-turning child. I’d hold her through it, feeling like an animal trapped. Feeling as though my heart wanted to leap from my body, as though I would peel myself out of my own skin, but holding completely still, afraid to wake her and cause another seizure.

The author's daughter Esmé, 7, has gene mutations in PCDH19, SCN8A, TBL1XR1, and MAP3K7, and uses a feeding tube.

That’s how it all started. I knew it was there. A therapist had mentioned PTSD to me soon after Esmé’s cardiac arrest, when I told her that part of me wished Esmé hadn’t survived because a person should only have to go to the edge of death once, and that the idea of her going through something like that again made me physically ill. When I told her I wanted to spit at mothers holding their peaceful newborns, some kind of naïve bliss on their Madonna faces, I wasn’t proud of those thoughts, but they were so oppressive I couldn’t not say them.

I’d remember caring for my hours postpartum body in the dirty public washrooms on the pediatric floor, some jerk knocking on the door.

What I didn’t tell her about was the flashbacks. Maybe they hadn’t set in yet. Maybe I didn’t even understand that they were happening. But as I would drive Esmé to the hospital for some or another check-up, I’d start sweating. Sometimes I would shake. And I’d light up with rage. I’d remember caring for my hours postpartum body in the dirty public washrooms on the pediatric floor, some jerk knocking on the door. I’d remember arriving at that hospital, having handed our 3-month-old baby into the care of strangers in the back of an ambulance, one person’s hand squeezing life into her lungs as they drove off, and thinking she might have died on the way there. I remember walking the halls of that place feeling as though I’d wandered into Dante’s Inferno.

On the day of the photo shoot, Esmé had been up most of the night dealing with respiratory challenges resulting from a virus. For a child like Esmé, such a thing can quickly lead to a hospitalization.

Those weren’t the worst moments. The worst were the ones when I saw a baby, especially one with a full head of hair. I’d time travel backward to those sickening moments, walking back through the doors of the E.R., watching her, watching myself.

But we are so adaptable. After a time I could begin to control it… I just stopped looking at infants altogether. Problem solved.

I had it under control.

Esmé would stop breathing, and I was calm, methodical, capable, in charge.

I mean, sure, I’d rage over apparently little things, like someone arriving a few minutes late, a confusion over the timing of a doctor’s appointment, a small spill. And I had some weird reoccurring dreams about suctioning Esmé’s airway during zombie apocalypses or finding anticonvulsants in deserted pharamacies in dystopian settings.

And maybe I had to leave the room when my 2-year-old niece ate because I wanted to give her the Heimlich maneuver every time she coughed.

But also?

Also, I had a super power: Esmé would stop breathing, and I was calm, methodical, capable, in charge. I could hold her, count out the seconds of her seizure, turn the nozzle on the oxygen tank, and be ready for whatever came. I could make a call about when to bring her to the hospital when she got another one of many infections, just before we’d lose control of her lungs. I could safely pull my car over to the side of the road, dive into the back seat, clear her secretions, and then calmly drive us home.

When I burned myself with boiling water, causing first and second degree burns on my legs and foot while alone with Esmé, I somehow contained Esmé. And stayed on the bathroom floor with a cool wet towel over my skin, trying not to pass out, while waiting 45 minutes until my parents could arrive, before calling 911. I was terrified of what would happen to Esmé otherwise.

It must have been convincing, my act, because much of my extended family didn’t seem terribly concerned.

I thought I was doing pretty OK. I mean, I was slowly dying inside. I felt as though I walked around every single day screaming but no one could hear. I had weird urges to do slightly dangerous things, to feel pain, to do things that would make everything come crumbling down around me. I mean, this makes me sound like I was inches away from being institutionalized, or, better yet, jailed (for spitting on some poor sweet unsuspecting mother). But mostly, the outside world saw me as not just normal, as super human. As brave. As Hillary "I Don’t Know How You Do It" Savoie. Actually, Dr. Hillary "IDKHYDI" Savoie, because in this time I was finishing a dissertation, starting a medical research foundation, writing, and taking exceptional care of a child who was doing far better than anyone could have imagined, all things considered.

Hillary, the author, has become well-versed in the medical intricacies of Esmés life.

My dad even told me in that time, straight-faced, “I don’t really worry about you. I worry more about your sister.” I wanted to scream into his face that I was dying, couldn’t he see?

It must have been convincing, my act, because much of my extended family didn’t seem terribly concerned. So many of the people I thought would bring food, give me breaks, send thoughtful cards, learn about my daughter, make calls to check in when I was trudging through hell, didn’t. They just didn’t call.

Or rather, some of them called. Often they called with their problems: asking for advice on the kinds of medical “emergencies” that life hands out to typical kids. I knew about emergencies, right? And, so, I’d offer advice about allergies and broken bones and infections, no doubt with a flat steeliness to my voice. I’d wear the glazed look I get when people compare that to life with Esmé, saying unforgivable stuff like that Esmé’s pain must not be as bad for her as for a child for whom pain is almost always a far-away boogie man. I might bite a little, now and then, but not usually very hard. And, later, I’d call my mom in tears.

From the outside the things that happened were subtle enough. I stopped talking to friends who couldn’t understand, stopped wanting to be near family that weren’t involved — forming scar tissue over the places that used to be connected to others. And, I suppose, in many cases they stopped calling me, no doubt afraid of the morbid stuff I’d let spill forth, or the anxious fast-paced speech I’d developed as a distraction, or their inability to follow what ever medical pilgrimage we’d last embarked on. Or maybe they just stopped being able to understand the edges of my life. Or maybe they became tired of watching me avoid looking at their babies. Or maybe because I threw myself into the intense connections I formed with the people who could understand and the people who wandered in as tourists, curious, trying to capture for a moment that burning fierceness and love inside me, and then dropping it as it burned them.

Even in periods of good health for Esmé, the author experiences hypervigilance, and worry about the moment things are not OK.

The level of isolation I felt was impressive, even as many of the people I should have been closest to seemed unaware of how bad things were, day in and day out, I guess because I made it look easy? Or because it was easier to imagine that was the case? Or because I didn’t just cry all the time and say I couldn’t manage anymore?

I could manage… I didn’t have a choice but to manage. I mean, I thought about death constantly and regularly had sweating flashbacks no one noticed and had weird fantasies about spitting at people. But I could manage.

At least, I could manage until around this time last year when Esmé had her third major operation. It went as well as was expected — she needed several nights in the hospital, including a few in the ICU for a surgery that gives most kids a single night for observation. But we knew this.

There were a few things that fell like dominoes into the change. First there was the decision to have the surgery, which came on quickly, after years of postponing.

Then at the end of her surgery, waiting with my husband, mom, and dad, we didn’t get an update for longer than they’d said. And then, rather than meeting us in the surgical waiting room as we’d been told would happen, the surgeon had us sent directly to meet him in the ICU. The woman who came to get us had an expression that suggested that she, too, thought this was a bad sign. In the elevator I began sweating and pacing. I was sure something terrible had happened.

But it hadn’t. She was fine, as fine as she could be, all things considered. However, my body never caught that drift. For some time, I would jump at every beep or moan from Esmé. I’d refuse to leave her side, my parents would have to force me from the room to grab lunch with my husband, assuring us they’d be OK there.

As Esmé recovered post-surgery, as she moved into several months of the best health in her life, I crumbled in ways I didn’t know I could.

Turns out it was a good thing that I was there way too much, however, because of the third thing: On our second night, just as I started to believe I could relax, I caught a nurse mid-medication error. She was about to dose Esmé with several times her dose of a benzodiazepine, whilst she was already on several other sedating medications. Such an error, had it not been caught, could cause many problems, not the least of which would be to suppress Esmé’s breathing to a dangerous level — always a severe concern in a child with low muscle tone, especially when they are already sedated.

As I jerked my daughter’s feeding tube away from the nurse and put my other hand up to stop her from delivering a potentially lethal dose of meds into her system, something broke inside me.

And I think I knew it, immediately. Because this was what separated this new version of me from the old me: Awareness. That moment is why I am hypervigilant, angry, skeptical, unable to let go, stand-offish. It looks crazy, right up until the moment it is not. Both of my parents later said they would not have caught the error. I told them I knew that. It isn’t because they aren’t paying attention — they are. It is that no one else has the expertise, the training, the unreasonable reflexes that I have honed in seven years of doing exactly this.

PTSD caused the author to withdraw from people who seemed like they didn't understand — or didn't want to understand, she says.

As Esmé recovered post-surgery, as she moved into several months of the best health in her life, I crumbled in ways I didn’t know I could. It wasn’t so much that I had changed. It was that Esmé had and my awareness of it all had.

So even as she was was doing well, I understood I was functioning as though she weren’t. Still hypervigilant. Still certain I was dying. Still irrationally angry. Still prepared for anything to happen. But nothing bad was happening. Esmé was going to school, learning, growing, making friends.

My own actions became clearer: It was PTSD that made me withdraw from the people I wasn’t sure I could truly trust. It was what made me so angry when an organization or institution I’d learned to rely on let us down. It was what made me feel isolated, and seek isolation. It was what made me convinced that something was terribly wrong when Esmé had nothing more than a tiny cold. I don’t really remember the ins and outs of those months. I remember the punctuation marks — the beginning of school, the trip to Sesame Street, her 7th birthday in January — I remember the feeling of joyfully watching her, wondering if this was how the rest of our lives could be. Moments of being aware of the simple, dull reality that could wash in on the heels of everything else, if only the ship could continue blowing on this wind and land us safely in a port. I remember thinking I could, maybe, get used to it. That I could get my bearings in this place.

Of her role as primary caregiver and advocate for her daughter, the author writes, "I will stay here for as long as she requires it of me, in whatever capacity she requires it of me."

And then came the beginning of the sickness in mid-January that has still not let go of my daughter, eight months later… and along with it the sense of: this is what I have been training for. This is what I know how to do. I know how to make teams of doctors hop to; how to obsessively research test results and treatments; how to trust my instincts that something is not right.

It was the recognition of the value of the side-effects of my PTSD, when they work as skills in service of my child's life, that brought me to this story. It compelled me to want to know if other parents in similar positions found their own fragile strength in the symptoms of their trauma. And so I sought out experts, and reached out to parents across the country, promising that if we dared lift the lid on our experiences it could make a difference. Even if I didn't know how, exactly.

I sought answers for all these parents as much as I seek answers for my child — out of hope that something will help. Something like the newest treatment we are trying, one that I hope will help flush out the rashes, fevers, fatigue, and infections that have become the new baseline.

Admittedly, I know this place better than the other one — the one where everything looks OK. I know the place that can come after, the one that is worse, and I live in gratitude that we are here instead. It isn’t so bad. I know this place is the place where the only person I can trust, completely, is me… and that is comfortable. That is where I am most at home, moving mountains for Esmé’s safety, because it is what I know. And I will stay here for as long as she requires it of me, in whatever capacity she requires it of me.

And someday, I hope, she will require me to take some wobbly steps in that other place again. Where for a time I will be too much of all the things I have grown to be, for her, in service of her. And I will learn how to be there, too. Just like I learned to be here.

But the intensity of my birth into motherhood, and into this storm, means that this place — this inferno — weirdly, will always be home.

Photography: Alice Corey

If you or someone you know is experiencing symptoms of PTSD or a related condition, contact the National Alliance On Mental Illness HelpLine at 1-800-950-NAMI (6264), Monday through Friday, 10 a.m. to 6 p.m. If you are experiencing postpartum depression or anxiety, you can also contact the Postpartum Health Alliance warmline at (888) 724-7240 or Postpartum Support International at (800) 944-4773. If you are thinking of harming yourself or your baby, get help right away by calling the National Suicide Prevention Lifeline at 1-800-273-8255, or dialing 911. For more resources, you can visit Postpartum Support International.