Category Archives: instinct

Dear Weary, Frightened Mom

raspberriesheartDear Me, Two Years Ago,

I can see you, standing at the kitchen counter, packing up another lunch you’re sure you’ll see again, nearly intact, in seven hours. I see you cutting that tortilla in half a little too angrily, putting cookies in a bag in a ritually delicate way, hoping that if you don’t break them, she’ll eat a whole cookie instead of the half that breaks. I see you counting raspberries, asking yourself how many she can eat during her snack time so that, by lunch, she’ll only have more calorie-dense food left to fill her up.

I see you struggling not to ask her if she ate her lunch when you greet her after school. I see you handing her a banana right there on the playground, too distracted by waiting for her to peel it to really hear how her day was. I hear your teeth clenching. I can feel your toes curling in your shoes as you chant, in your head, take a bite take a bite oh my lord take a fucking bite, NOW. Continue Reading…

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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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Two Years Later, Fury

twoyears

In a chair for the first time after her surgery

Yesterday was the two-year anniversary of the surgery that changed Sammi’s life.

This morning, in an effort to remember a particular detail of that time, I logged into the hospital’s patient information system. I clicked aimlessly, seeing everything with the eyes of experience and after-the-fact understanding. All these test results — why didn’t I read them in detail back then when they could have done something more than remind me of how late I put my research skills to work?

The real answer is that I didn’t know how to access charts, back then. They weren’t online. They weren’t sent to us by mail. All we got was the occasional placating phone call. Oh, and a stack of bills.

Now here, in the charts, are all the comments and clues that make sense in retrospect. Like re-reading a mystery after I already know who the killer was, I am seeing the telltale signs in notes on test results and procedures: muscle visible in her esophagus, tonsils visible on a chest x-ray, no mention of her abnormal aortic arch on that first diagnostic endoscopy. The information was there for anyone to find: here is why she is always sick, here is why she cannot eat, here is why no doctor can explain her idiopathic results.

I am angry. I am furious. Continue Reading…

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I Went Outside

tree skyWhen my daughter spent six days in the hospital for the cardiac surgery that would change her life, I saw daylight and felt fresh air only for a few moments a day on my way from the garage to the hospital or vice versa. When we went home, we resigned ourselves to staying inside some more.

Sammi was cozied into a corner of the couch that her older sister had lovingly lined with soft blankets and fluffy pillows, but she was itching to move. Unfortunately, doctors’ orders were that she not only sit still, but that as long as she stayed on strong pain medication, she also needed to be accompanied up and down stairs by an adult and watched when she was in the bathroom. She grumbled and sometimes outright cried about this state of affairs. I did neither, but the emotions I’d kept in check in her presence for the last week were beginning to bubble close to the surface. Though I’ve never had trouble staying calm and steady for her, I knew there was a limit to the holding-it-together I had in me. Sooner or later, I needed to get out.

When my husband went back to work, there were still two weeks of at-home healing left for Sammi. One of my close friends had offered to come over one day and sit with Sammi so that I could get out, just for an hour or so. Deciding to take her up on it was hard for me, though I knew all the platitudes about mothers needing to put on their own oxygen masks before helping their children. I needed the break, and I also needed to be watching Sammi at all times for any sign that something — some undefined something — was going wrong.

In the end, I accepted. Continue Reading…

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Punished

ivWhen my eight year old daughter Sammi went into the operating room to have an operation to unkink her oddly bent esophagus, the surgeon’s intention was to make two long incisions across from each other on her back: one to access and gently move her aorta to one side, and the other to move her esophagus itself away from its current position and sew it to her chest wall, securing its shape with stitches we would never see.

This delicate set of plans was expected to take nearly six hours to execute.

As we sat in the waiting room that day, surrounded by the useless things we’d brought with us, I couldn’t help but think about what was happening each minute Sammi was away from us. At the three hour mark, however, we were surprised to receive a report that the surgeon was closing the incision. He’d been able to complete the entire repair through one incision instead of two.

Although we were relieved — one scar instead of two! — it wasn’t until late the second night after surgery that we understood what kind of blessing that was.

About two hours after the surgeon began closing his single incision, we were allowed to join Sammi in her hospital room in the cardiac ward. We found her with her eyes half-closed, lying with her bed slightly inclined, her right finger and thumb encircling a small tube with a button on it.

I pressed my lips to her forehead, which was warm and sticky. “You did great, Sunshine,” I whispered into her hair. “Do you need anything I can get you?”

She moved her lips, and a scratchy breath came out.

Water, she mouthed. Water, please.

“Can she have water?” I asked.

The nurse said she could, and I held a cup with a straw to her lips. She swallowed, then winced and twisted her neck away. She had been intubated in surgery for hours, and her throat was raw and dry.

We sat quietly at her bedside. I ran my fingers over the bare spots on her arms while she drifted, the button-wand in her hand delivering more morphine every time she pressed it. She asked for movies which she watched for only a few moments at a time.

Somehow a day passed, and the pain seemed manageable, and then the silos of pediatric medicine began to show themselves. Continue Reading…

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