Unlearning the Body

chocoAfter six weeks on a fat-free diet and a week on a low-fat diet, my eight-year-old daughter Sammi was officially released from all her food restrictions by her cardiothoracic surgery team. Her chylothorax — a leak in the thoracic ducts that process fat — had completely healed.

The two of us had decided to spend the day together in downtown Chicago, starting with a visit to the Hershey Store. After all, it had been nearly two months since she’d had free rein to eat anything she wanted. I thought that surely she would gorge herself on candy while I watched gleefully.

Instead, she nibbled timidly and said, “I’m full for now.”

It was heartbreaking to realize that, as far as she’d come — years of false diagnosis with reflux, then eosinophilic esophagitis, then a revelation that her swallowing problems stemmed from a structural obstruction in her chest, culminating in major cardiac surgery — she still had more hurdles to jump. Of course we couldn’t undo eight years of her experience of eating in one day at the candy store. Why had I been so naive? Continue Reading…

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Blame Needs a Target

When Sammi was a newborn, the sleep deprivation was expected and, though unpleasant, not unreasonable. Ronni had not slept well, and I was ready for Sammi not to sleep well. When her 90-minute-maximum sleep schedule extended into three months, and I was back at work, I gave in and hired a postpartum doula to come twice a week and give me five consecutive hours of night time sleep. I felt no end of guilt around this; other mothers could survive on this kind of broken sleep without help, and even if they were miserable, most of them could not afford the kind of help for which I was paying someone. I needed that sleep to function, and so I fought past my blame of my own body for needing it, and I slept for five consecutive hours, twice a week, for about six weeks, until I had to quit my job. Every night after that was broken into tiny fragments of light, fractured naps between feedings.

Still, this all felt temporary. Time crawled by as winter turned to spring. Sammi was growing more slowly, but she was not sleeping any better. Against the raw and crackling synapses in my brain that convinced me it was wrong, her new pediatrician and every other adult in my world convinced us to sleep-train her when she was eight months old. We opted for a method that seemed less cruel than others and promised she would be sleeping through the night in a maximum of twelve days.

floorNothing can describe the kind of screaming she maintained for hours every night. Following every lesson in the sleep book, I waited as far from her in the house as I could between scheduled “check-ins,” but the sound followed me. I cowered on the hardwood floor, hands over my ears, rocking like a traumatized child. I felt the screams vibrate through my heart. I was exhausted by months of sleep deprivation, fear of illness, and the completely new world I was inhabiting, but there was something more.

A mother understands the quality of her baby’s scream.

She was not screaming in frustration. She was screaming in pain. I knew it. I said it. I said it on day one and day four and day twelve and on day twenty-seven, when no one could believe how long it was taking to sleep-train Sammi.

Five months later, when she was finally diagnosed with a cardiac condition that involved, in part, her aorta wrapped around her airway, we were told that anytime her blood pressure rose, she would feel her airway constricting. It would hurt, they told us. Don’t let her get worked up until she’s had surgery.

Before we knew for sure, before a CT scan confirmed the diagnosis of double aortic arch, I blamed myself for being a poor parent who could not teach my baby to sleep. It must be, I thought, that she knew I didn’t really believe in sleep training; or that I was eating something that upset her stomach as it passed into my breastmilk; or that I hadn’t checked her bedroom well enough for drafts or spiders or wild wolves which must be charging at her crib as I rocked on the floor, listening to her screaming from the floor below.

After we knew for sure, I blamed myself for not pushing her doctors to find out what was wrong. I knew all along. I knew something was wrong; I knew that was screaming-in-pain, and I had not stopped it. I had not fixed it. All she needed was to be calmed, have her blood pressure drop so that her aorta would stop strangling her. Instead of holding her, I left her alone in there, to scream and choke all by herself.

Once I knew, I didn’t stop holding her. Not ever again. I am holding her still.

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Look at My Breasts

Something went very, very wrong at some point in my pregnancy with Sammi. We’ll never know what happened, exactly, but I had a moment around the seventh month when I believe the message was delivered.

David and I were lying in bed, reading. It had been — and continued to be — an easy pregnancy, relatively speaking. My only complaints were early queasiness that never quite went anywhere, and a respiratory infection that lead to a round of antibiotics. I had a normal amount of weight gain, baby growth, and everything else was going as expected. Suddenly, for absolutely no reason, I had a feeling of total dread.

“David,” I said, “I think there is something really wrong with this baby.”

“Why?,” he answered.

I couldn’t tell him, but I made him get down to the base of my belly and speak loudly and deeply, trying to get the baby to move. It took a few minutes, and a cold glass of water, but the baby did squirm or kick, and my fear passed. I asked David if he had any premonitions like mine, and he didn’t.

Once Sammi was born after a day of frightening warnings — she was late but tiny, her heart was strong but decelerating, she was proportionate but inexplicably undersized — I found myself shocked to be lying on a bed in a recovery room, abdomen stapled shut, labor abandoned for c-section, pumped full of drugs and paralyzed by an epidural. A few moments later, someone wheeled a plastic tub on a cart into the room, and I peered over my useless knees to see the baby in the tub.

She was kicking legs and wires and tubes. I couldn’t see her face. I’d had one kiss in the operating room.

Thankfully, Sharon, the birth attendant I hadn’t used, was waiting with me. She saw me strain to look at the baby and said, “Have you nursed her yet?”

“No,” I said. “I haven’t even held her. Am I allowed?”

“She’s your baby,” Sharon said, and strode purposefully to the tub, picked up the baby, and brought her to me.

I held her, all four-pounds-eleven-ounces, and put her to my breast.

She was ferocious. She went at my nipple with vigor and power and purpose. The very first suckle made me gasp, and she didn’t stop until a nurse pried her away and took her to the nursery, having discovered a blood sugar problem that needed monitoring. I would spend the next eight days fighting to nurse her.

After that, I would go on to nurse her for nearly three years, through food refusal and ear infections and cardiac surgery, through toddler tantrums and night terrors and pneumonia, through hideous reflux and tonsillectomies and naps. I nursed her far longer than I ever wanted to, and far more often, mostly because it kept her alive and but also because it kept me vital. When she was so scary to me that I couldn’t bring myself to connect, when I could not make her healthy, when I could not feed her any other way, I could nurse her. I could hold her and nurse her and feel useful and helpful not because I was stubbornly clinging to some ideology about breastfeeding but because it really did work. For years, it was the only thing that consistently worked to keep her growing.

So, look at my breasts.baby in a sling

Really, you have my permission. Admire them, not for their shape or their sexuality, but as the most reliable medicine I had. Admire that they took a very sick baby and grew her from four-pounds-eleven-ounces to twenty-three-pounds-twelve-ounces. Admire that the body to which they were attached kept going while those breasts nursed a baby ten, fifteen, twenty-two times a day.

Something bad happened in my uterus. Maybe it was around the seventh month, or maybe that was my body realizing what was already wrong, or maybe that was normal pregnancy jitters. But nothing bad happened to my breasts. They soldiered on, they ran the marathon over and over, carrying a teammate as they crossed the finish line.

It’s ok. Admire my breasts. I sure do.

 

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