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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6 Things Not to Say to a Family on a Medically Restrictive Diet

talkingBetween my daughter Sammi’s birth and her ninth birthday, she spent nearly all of her life on some kind of medically-restrictive diet. Whether it was being forbidden to eat grains as a baby, following an acid-free diet as a refluxing toddler, using the six-food-elimination diet to uncover the cause of her (incorrectly-diagnosed) eosinophilic esophagitis as a little girl, or choking down the unpleasant fat-free food that kept her safe from chylothorax after her cardiac surgery, we often had to define what our whole family ate by the things that Sammi had to avoid.

During all those years, I heard a number of unhelpful comments about what I fed my child, ranging from the well-meaning but insensitive to the downright offensive. If someone in your world is eating a diet that their doctor has prescribed, the following comments should never, ever come out of your mouth. Continue Reading…

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Gracias, Mil Veces: A Mother’s Day I’ll Never Forget

handheartThere were so many things to which we had to say “no” in the weeks after my 8 year old daughter, Sammi, had major cardiac surgery.

Soccer? Recess on the playground? Gym class? Wii games? No, far too much running and too many opportunities to get hit where her back was freshly stitched together.

Decent-tasting food? No, she had to be on a fat free diet to treat chylothorax.Birthday parties? No, too many off-limits foods and too many germs.

We said no — had to say no —  to almost everything she liked. It was heartbreaking. Still, there was one very wonderful, very life-affirming refuge for her: her third  grade teacher, Andrea Macksood. Continue Reading…

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Practicalities of the Chylothorax Diet

fatfreeThe best thing about being forced to eat a fat-free diet for chylothorax is that it is always temporary.

The worst thing about being forced to eat a fat-free diet for chylothorax is everything else.

If you are coming to this page from a web search for “chylothorax diet,” then you already know that you — or the person you’re caring for – has a leaking thoracic duct in the chest leaking a fluid called chyle, largely made up of dietary fat. If left untreated, chyle could fill the chest cavity and make it very hard to breathe. Because thoracic ducts usually heal on their own, simply waiting for that to happen is often enough treatment. While you wait, your diet has to be fat-free.

When my 8 year old daughter had to follow this diet after cardiac surgery, we were flummoxed. So many foods have a gram of fat in them — too little to be bothersome to almost any other diet, but twice as much as was allowable for her at the time. As we had before with other difficult, medically-required restrictive diets, we dug deep and did a lot of research. Here are some tips that I hope will help others manage this crummy, unpleasant, high-stakes diet. Continue Reading…

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