Endless Meals

Sit down and finish your dinner.

Are you done or are you just distracted?

All the rest of us are done. Could you please eat your dinner?

Just FINISH. If you want that food, then EAT IT.

For CRYING OUT LOUD, Sammi, FINISH YOUR DINNER!

I can’t sit here with you anymore. Eat what you want and then bring your dish in.

My husband and I had decided early in our children’s lives that we would eat together as a family whenever possible. We had both grown up that way, largely, and especially given the research that showed how valuable a family meal is to raising connected families, we’ve maintained this policy even as our children have gotten older and busier. Seated at the end of the dining room table closest to the kitchen, the four of us have always used the time together in the traditional manner — catching up on our days, joking around, planning family events together.

But when we were done, there was Sammi. Still sitting there. Still eating.

Unlike other families I knew who struggled with a picky child at mealtime, Sammi’s issues were seldom that she was refusing to eat what was on the plate in front of her. In fact, if we suggested that she might be finished, she would often tell us that she was still eating. Then she would take a bite, chew it slowly, and begin a conversation. Five or six minutes later, we’d realize that she was not using the time when someone else was talking to take another bite — instead, she was watching, nodding, interacting, but not eating any more.

Pick up your fork and put some food on it, we’d say, rolling our eyes. You know how to eat. Just eat your dinner!

Thirty minutes would pass, and the other three people at the table would be long done with their meals. We’d linger, chatting. Maybe one of us would get up to switch a load of laundry, rifle through the mail, answer the phone. Those left at the table with Sammi would keep chatting, fussing with our dishes, maybe having another helping of something, just to pass the time.

An hour after sitting down, Sammi would still be spearing pieces of food, now long-cold. By now, her sister Ronni would be off and playing, or reading a book in a chair nearby. Either David or I would have lost the ability to sit at that table a moment more, and would be in the kitchen doing dishes or hanging out with Ronni. The parent left at the table might start reading to Sammi or to him or herself in an effort to stave off the frustration and boredom of still being at the dinner table.

After ninety minutes, it would be nearly bedtime. If Sammi was still sitting at the table with her food, we often began a countdown to the end of the meal.

In ten minutes you need to get ready for bed. Eat whatever you can finish by then.

Bedtime is coming in five minutes. Finish.

It’s almost time to go upstairs!

Dinner time edged right up to bedtime for years and years. There were never, ever any family board game nights. We seldom had dinners in front of a movie, lest the adults lose our focus or vigilance over the state of Sammi’s plate. A summer walk at sunset? Never — we were still at the dinner table.

It helped to know that Sammi’s slow eating was likely a symptom of eosinophilic esophagitis, or reflux, or both. It helped, but not enough. I kept feeling that nagging, nagging sensation in my own belly — something else was wrong. This was nearly her only symptom. Why did the problem of slowness persist even with drinking? She drank like a toddler even at age 8, puffing her cheeks out to fill them with water and letting it down a tiny bit at a time. It seemed wrong. It seemed strange. I sat there, night after night, staring at Sammi eating in slow motion, musing and, despite myself, fuming.

We watched her, the sound of doctors labeling her “failure to thrive” whispering through our heads as she delicately balanced four peas on her spoon. Feed her more calories, they told us. She needs more nutrition, they insisted.

Let THEM try, I thought, over and over, waiting for the end of another interminable meal.

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

The Worst Terrible Advice

papersThis is the best era yet for the acquisition of information. No matter the strangeness of your request, a search engine can turn up something. In the years between my medically complicated child’s birth and her diagnosis with a rare inflammatory disorder, the internet became a phenomenal resource for medical information. The first thing I did after being handed the name for the condition — eosinophilic esophagitis — was to plug it, syllable by syllable, into a search engine.

This is a dangerous endeavor. There are multiple copies of the clinical information: the diagnostic criteria, the available treatments, the symptoms — and then there are the support groups and forums. I knew from previous small forays into research of her first diagnosis, cardiac in nature, that the people posting on the bulletin boards are largely the ones in desperate need of something. They need either sympathetic ears, advice from those more experienced, or recommendations for next steps when the first treatments have failed. The success stories — those who have tried a treatment, succeeded, and gone on with their lives — are not well-represented on disease forums. They don’t need anything. They have moved on, the disease or the procedure well into their past. Holding this perspective is crucial for the newly-diagnosed. For the most part, only those troubled by the issue remain on those forums.

That left one final category of search engine results: the foundations and non-profits.

For nearly every rare disease, a family foundation or group of patient families or medical research team has formed a charity. Funding research for cancer is relatively easy compared to funding research for something that affects only a tiny portion of the general population. These foundations are, literally, saving lives through hard volunteer work, fundraising, and advocacy. It was through one of these non-profits that I had my only one-on-one interaction with a parent of a child with eosinophilic esophagitis.

It was completely terrifying.

After posting on a Facebook group for the families of children with this disease, a parent heavily involved in one such foundation offered, via private message, to talk with me on the phone. I was struggling greatly with meal planning and also unable to see what life would be like for us in the long term. I was thrilled to be able to speak with someone in real time.

I explained to her, when she called, that my daughter had oddly not exhibited any of the typical symptoms of this disease except for the reflux-like sounds. She wasn’t vomiting regularly — in fact, she had never vomited — and though she was very small, she was not disproportionately thin. She didn’t have any food allergies. She didn’t have eczema. Maybe, I suggested, she would be one of the 90% of children for whom the culprit was just one or two foods that, once removed from her diet, would put the disease into remission.

I can still remember exactly where I sat in my dining room, cookbooks and menus and lists spread around me, when this woman said to me, “I wouldn’t count on that.”

I was surprised. She went on, “That 90% statistic is really exaggerated. Most of the kids I see in working with this non-profit start out that way, but eventually it gets worse. They lose more and more foods as they get older. Eventually they all end up on the formula.”

The formula she was describing is an elemental amino-acid based drink that provides nutrition for patients who can eat only a limited number of foods, a formula which tastes so vile that many of them choose to have it pumped directly into their stomachs through a gastromy tube. She described her own daughter’s path from diagnosis to her current diet, which was composed exclusively of the formula and five other foods, only one of them a protein. She spoke about the extremity of the path in which her daughter had carefully and scientifically added each food over years, a process which included many foods which “failed” the tests when they made her daughter sick. “This is how it goes,” she said. “I just don’t want you to get excited. That’s what happens to these kids.

I asked her how her family functioned in these circumstances. Holidays? Family dinners? Travel?

“I eat a sandwich over the kitchen sink most nights,” she said, “so she doesn’t have to smell it.”

As far as I knew in that moment, she was describing my future. I knew doctors didn’t always listen to patients. Who should I believe? The mother of a patient with the disease who was also a leader in a non-profit dedicated to research, or a doctor who saw hundreds of these children in his practice? When that call ended, I had to leave my mess of papers and notes and walk quickly a few blocks to retrieve my daughters from day camp. I was shaking. How many more months would my life — already drastically changed by this new diet the doctor prescribed, eliminating dairy, egg, soy, nuts, wheat, and fish from our already-vegetarian diet — be able to include a family dinner? How many more afternoons at the farmers’ market, eating cherries in the sun, were left for us?

Later, I would learn that the woman to whom I spoke had a daughter with a far more severe case of this disease than most and, as such, had sought support and company from others in a similar situation. I would find, as the years went by, that my instinct was, as usual, correct; my daughter would pass food trials and never need that formula. When the standard treatment protocol works, the patients don’t often feel driven to form and work for disease-specific foundations.

But that day, I didn’t know that. That day, she shook the hope out of me.

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

The Soup

soup & ladleThere were several points in her life when we thought Sammi might end up with a feeding tube — when she couldn’t gain weight after her first cardiac surgery; when she was diagnosed with eosinophilic esophagitis and an unhelpful parent told me that’s what happens eventually to all of those kids; and when eating became such a chore that we thought it might be better than the daily fight to feed her. Expecting it to happen on and off for nine years has made me at least peripherally aware of the vocabulary around tube-feeding — NG tubes go in the nose and down to the stomach, G tubes are surgically installed right into the stomach with a button that opens and closes to insert the tube. It’s one of the reasons why Sammi’s soft, white belly is my favorite place to kiss: I secretly always worried it would end up marred by that button.

But it didn’t. Instead, I became the MacGyver of cooking for every crazy restriction she had, self-imposed or medically required, and a combination of luck and persistence kept her from ever needing a tube. Foods came in and out of her life depending on how she felt and the diagnosis we were managing, but a few choice dishes survived nearly every restriction. The first food I learned to make that she really, really liked was a very simple chickpea soup I adapted from a recipe I found in Vegetarian Times magazine.

It has become such a staple that we call it The Soup or Sammi’s Chickpea Soup. From experience, I can tell you that, aside from the fact that it’s delicious and very cheap to make, it also works for all of the following dietary restrictions:

  • Soft foods only
  • Vegetarian/Vegan
  • GERD diet (no citrus, tomatoes, chocolate, caffeine or alcohol)
  • Dairy free
  • Gluten free & Wheat free
  • Soy free
  • Egg free
  • Nut free

That winter after her first cardiac surgery, with the threat of feeding tube constantly dangling above us, this soup was the savior. I could melt two tablespoons of extra virgin coconut oil into her bowl, adding more than two hundred calories per serving. Sometimes, she ate only this soup and blueberries for days and days on end. I made several batches per week.

This soup made me feel powerful. It was a weapon I could use to fight the ribs I saw sticking out of her back and the shape of her skull so prominent under her thin downy hair. This soup let me do something about what was wrong. I fed it to her spoonful by spoonful until she could hold a spoon herself.

“Swallow, sunshine,” I told her. “It’s your soup!”

This soup is my hero.


Sammi’s Chickpea Soup

adapted from this recipe by Vegetarian Times

1 Tbs. extra-virgin olive oil
1 medium onion, diced
4 cloves garlic, minced
2 (15-oz.) cans chickpeas, rinsed and drained
2 cups water
2 cups vegetable broth
1 bay leaf
½ cup roughly chopped greens — any greens will do (spinach, chard, parsley, kale)
1 ½ tsp. salt
1 tbsp fresh lemon juice (optional)

Saute the onions and garlic until the onions are translucent. Add all the other ingredients except the lemon juice. Cook uncovered over a medium-high flame for roughly fifteen minutes — until the chickpeas can be mashed against the side of the pot with a fork. Turn off the heat, remove the bay leaf and, using an immersion blender, puree the soup to the consistency you like best. If your diet and palette allows, add the lemon juice and serve.

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

Untethered

As expectant mothers, we all spend a fairly intimate and intensive period of time with our obstetricians or midwives, only to have the relationship effectively end after the six week postpartum checkup. It’s disorienting to have someone so focused on your health suddenly drop out of your life entirely. The same thing happened to us with regard to Sammi’s health after every chapter of her medical journey ended. Some would make returning appearances later, but we only know that in retrospect.

When Sammi was released from the hospital after her first cardiac surgery at 14 months old, we were essentially released entirely from the care of the cardiothoracic surgery department. On a Tuesday, a man had his hands quite literally on my daughter’s aorta, and on Thursday, we walked out of that hospital with the expectation that we would never see him again. His advanced practice nurse told us that children with double aortic arches seldom need any followup care.

It is hard to explain what it felt like to carry her out of the hospital that day. She had a four inch incision running the length of her shoulder blade, covered with strips of surgical tape. Our only instructions for her care were to scoop her up like a newborn, not under her armpits, for six weeks, and to return her to her normal diet.

What was her normal diet, anyway?

At fourteen months, she still would not eat anything more than stage-one baby food from a jar, which is the consistency of watery mashed potatoes. She hadn’t even eaten that in weeks due to the pre-surgical dietary restrictions. Her pediatrician told us to treat her like a baby just starting solid foods and offer her everything. Shortly after we returned home to her joyful older sister, I snapped this picture:

Sammi & Ronni with snack

Sammi had never eaten a cracker in her life, but she was following Ronni around the house when Ronni was eating little bunny-shaped cheese crackers. Ronni offered her one, and Sammi shocked both of us by eating several.

“She’s eating another one!” Ronni kept shouting.

I cried, a little.

Sadly, it never amounted to much. Sammi went from sixteen pounds and nine ounces before the surgery to sixteen pounds and one ounce after it. She gained no ground in the first month after her release. We tried to get answers from the surgeon’s staff, but they had already done their job. They are not clinicians; they don’t manage day-to-day life. They cut and sew and mend structural problems. Ours was not for them to manage anymore.

We went to our pediatrician. She conferred with the otolaryngologist, who sent Sammi to have her esophagus dilated — now her fourth time under general anesthesia in a three month period. The radiologist who looked at her esophagus under anesthesia said that it didn’t look very constricted at all — barely worth dilating — and that what was more troubling was the musculature of her esophagus, which was uncoordinated and spasmodic in some places. It’s called dysmotility, he said, and no one knows whether or not it will go away.

For two days after that procedure, Sammi ate real food. She ate pizza one night. I took more pictures and called all of our friends and family, and then after two days, she stopped.

Her pediatrician gave us three months to put weight on her or she would insist on a feeding tube.

The surgery meant to end these struggles was a tease. The surgeon brushed his hands together and walked away, the doctor who dilated her esophagus shrugged and moved on, and the pediatrician, earnest but far out of her league, suggested Carnation Instant Breakfast.

I am just a parent. I am not a doctor, I am not a dietician, I am not a magician. I didn’t know what to do. I was alone with a baby and a never-empty bowl of blueberries in cream. Doctors cut her open, stretched her insides, gave her drugs, and then sent her home with me. Your turn now, mom. Don’t mess this up.

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

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.

 

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather