Appreciation

For roughly six months — from about eighteen months old until about two years old — Sammi was a normal toddler. She did normal toddler things, had normal toddler colds, slept like a normal toddler. We moved from one house to another, and she adjusted as toddlers do — haltingly, in spurts of joy and regressive frustration. She and her older sister, now both on two feet and walking, hand in hand, moved through the world as a little team. They explored our new home, finding the places they could inhabit and climb, staring out new windows onto an unfamiliar street. I, hausfrau and telecommuting consultant, bustled around in fits of unpacking and putting-away.

We began getting a box of vegetables every week from a farm. I learned to cook kohlrabi. It was the very picture of domestic cliche. I saw us in the Paul Simon song “Beautiful,” singing to myself, “Back in the house, family of four, two doing the laundry and two on the kitchen floor.”

This could work, I thought. This could be ok.

Sleeping toddlerThe shoe was waiting to drop, however. Regular struggle steals more than the moments in which it pushes us; it steals the innocence of all moments before and after. That summer when I set up house, learned to cook, anticipated Ronni’s kindergarten year and toilet-trained Sammi — that was another tease, another prelude like my easy pregnancy. Something sinister was always coming. Is always coming.

Sammi’s ears were perforated by tiny tubes — common among children now, she’d had them placed the same day that her doctor had discovered her double aortic arch. It meant that infection didn’t sit, festering, in her ears when she got a cold. It either drained into sinuses or, sometimes, out of the tubes and onto her pillow, leaving a puddle of ooze smeared across her face and in her hair as she slept. Once, I arrived at her child care to find her still asleep, the ooze soaked through her mesh cot and dripping on the floor below her. I took her to the pediatrician on-call — not our beloved regular doctor, but a cranky older man who’d seen everything.

“It’s earwax,” he said, when I described how I’d found her.

“But it was green,” I explained, “and a little orange.”

“Not an infection,” he declared.

We went home. The next day, her face was swollen and she had a fever. I called our pediatrician, who prescribed ear drops, oral antibiotics, rest, fluids.

This scene began to repeat itself until, ostensibly, the tubes fell out or became useless. Infections began to collect in her sinuses on a regular basis.

Her pediatrician mentioned adenoid surgery offhand. An aside. Maybe. For later. If this didn’t improve. Also tonsillectomy. Maybe.

David and I knew, the minute that the words “adenoids” and “tonsils” released themselves into our orbit, that Sammi would have them out. We saw it coming and waited for it, impatiently, like a train terribly late but utterly expected to arrive: she’d have them out eventually. The pediatrician had a magic number, and that was three. Sammi needed to have three sinus infections, and then we would return to the otolaryngologist for tonsil/adenoid assessment. There was no doubt she would have three infections, and so after the first, we secretly hoped that the next two colds would end up there. Colds became fevers became sinus infections became antibiotic stomach issues. The autumn and winter filled themselves with her misery, head down on a large cushion on our living room floor, watching tv limply.

When the otolaryngologist examined her in February of 2008, he used the words “impressive” to describe her tonsils. When she opened her mouth, he said, “Oh my lord.” The tonsils and adenoids came out in mid-March, her fifth experience with general anesthesia. Her airway issues interfered with her recovery from the anesthesia, forcing us to stay overnight in the hospital with her. A family member visited and observed, from the foot of the bed, Sammi propped against her pillows watching cartoons.

“Dora!” Sammi croaked, squeaky and hoarse at once. She clapped.

That family member burst into tears.

I could not understand what was wrong, and asked her. She said, “It’s just so hard to see her like this!”

Like this?, I thought. Happy to watch cartoons in bed? Eating a popsicle? This, I thought, is the best it gets. This is alive. This is another round of anesthesia over, another defective part of her gone. This is a damn party.

I am on guard. The perfect moments — children playing in a living room of empty boxes, summer squash sauteing on the stove, medicine that works, surgery that doesn’t kill my child — the perfect moments are always before or after something else. Since Sammi was born, I have lived every experience partly in reflection and anticipation, asking myself how I will appreciate or regret it later or how it compares to the moments before.

It’s a hoarding, truly. I am collecting my time with my children, categorizing it, weighing it, blessing and cursing it and setting it up on display in my head for assessment. The through line: are you appreciating this?

Well? Am I?

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Laid in Arms

hospitalDavid, Sammi and I slid into the hospital the morning of her first surgery the way a reluctant toddler comes down a slide. All sorts of practicalities handled, bags packed for a hospital stay, all that remained was the hour of waiting in a room with a baby we might never see again.

If that sounds maudlin, that’s because it was. The risk to this surgery was smaller than most cardiac surgeries, but there is always a risk to surgery. The doctors would slice into my smooth, perfect, luscious baby’s back, pull her ribs apart, and decide which branch of her aorta to clamp and remove. The very thought of it made me weak. And yet, my job was to hand her over to these doctors who didn’t know anything about who she really was. They didn’t know she could sing. They didn’t know how much her four year old sister adored her. They didn’t know about my ambivalence about her for the first months of her life, ambivalence that I worried would make the universe believe that I didn’t want her, after all, and maybe it would take her away from us to punish me for it.

We passed Sammi around the pre-operative room — David and I, his mother, his sister, and her husband. After I refused to give her to a strange doctor to take away, screaming for me, they gave her a shot of Versed, an anti-anxiety drug that made her loopy and cross-eyed. When the anesthesiologist came to take her away, she waved at me as she was carried down the hall in his arms.

Once she was out of sight, I fell sobbing into the arms of my sister-in-law. She and I had never been close, but sometimes, the right person at the right time becomes a lighthouse. She was solid and soft at the same time. I think I fell on her because she was the very nearest person, and all my hold-it-together just dissolved once Sammi was truly and in every way out of my hands.

The details of the day — the waiting, the surprise visit with pastries from David’s aunt, the moment when the surgeon came to tell us that everything went well — these are the uninteresting snapshots of someone else’s life, the ones we look at politely but cannot connect to our own. The universal is in the humanity of kind people when you need it the most. That hug. Those pastries. David’s hand on my shoulder when we learned that they were closing her incision, and my memory flash of his hand on my shoulder as Sammi had been born, with me flayed on an operating table, paralyzed, unable to help her. She’d lived through that. She would live through this.

I couldn’t do anything to keep Sammi alive except to go and find the people who knew how, and to lay her in their arms.

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The Longest Nights

“Don’t let her get too worked-up.”

By the time Sammi was 13 months old, we’d had five straight months without her getting terribly sick, enough time for me to catch glimpses of sweetness in her. I had started, haltingly, to fall in love with her, resentment cracking with every three hour stretch of sleep. Whenever I left the room and came back, she would hold her arms up to be held, and then pat my back and say “mama.” It was the stuff of syrupy mommyblogs and Hallmark cards; she was tiny but proportionate and round-cheeked, with a fluff of reddish blond hair, big brown eyes, and smooth fair skin. Life had become almost tolerable that summer before her first birthday — I’d begun working again, a few hours a week as a freelancer, and we spent time outdoors every day. The sun was coming out, metaphorically, and then she got a cold, and all the clouds rolled in fiercely from every corner of the sky.

“Don’t let her get too worked-up.”

These were the words we were given by the cardiothoracic surgeon in the one meeting we had with him before he operated on Sammi.

That fateful cold in August of 2006, the one that set off another hospital stay and a visit with the otolaryngologist, ended in a bronchoscopy under general anesthesia and the diagnosis of double aortic arch, confirmed with a CT scan, also delivered under general anesthesia a few days later. Surgery was scheduled for October 12. We had three and a half weeks in which the orders were to stop all solid food feedings — just nursing and milk — and not let her get “too worked up.” We asked the pediatrician what that meant, and she did not mince words. “You do what you have to just to keep her calm, mom. Bring her to bed with you if that helps. Just keep her calm.”

We didn’t learn until later that rises in blood pressure could strangle her from the inside.

nightcar“Don’t let her get too worked-up.”

Sammi didn’t like sleeping in our bed. The August respiratory infection never quite resolved, and her stomach was wrecked after the antibiotics. She woke often. David and I split the nights into five-hour shifts; one of us would be responsible for all things she needed between 10pm and 3am, and the other person would take her from 3am to 8am. Most nights, that meant that one of us would spend that second shift driving around the suburbs with her dozing in her car seat, her favorite music on repeat through the car speakers. It kept her from crying, allowed her to sleep, and required nothing more of us than maintaining the movement of the car.

We went through all-night drive-thru windows for Sprite and waited until she was deeply asleep to switch to talk radio for the company. Even now, nearly nine years later, when we drive certain stretches of road, one of us will remember the way it looks at 4am in the fall. Even now, we remember that time as the nightmare it was: keep driving or the baby will cry. Keep driving or the baby will strangle herself from the inside with her own aorta.

“Don’t let her get too worked-up.”

We held our breath and drove, and we kept her alive.

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A Cold, Clinical Interlude

What is a double aortic arch?

double aortic arch

Diagram of a double aortic arch, courtesy of Medline.com

 

In a person with normal cardiac anatomy, the aorta (which is our body’s main artery) comes up out of heart toward the person’s back, travels down the chest parallel to the esophagus, and branches off into smaller arteries below. In a person with a double aortic arch, the aorta is shaped less like a simple tube and more like a tube with a ring at the top. In fact, a double aortic arch is just one variety of a group of congenital heart conditions called “vascular rings.”

If you look at the image above (borrowed from Penn Medicine), you can see that the “ring” created by the double aortic arch fits like a rubber band around both the trachea (through which we breathe, connecting the mouth and nose to the lungs) and the esophagus (through which food travels from the mouth to the stomach). As a person with this kind of utterly impractical anatomy grows, that ring may not.

With a band around your trachea, breathing is difficult.

With a band around your esophagus, eating is difficult.

This was the diagnosis Sammi received at 13 months old, with an order for surgery as soon as possible.

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