Terrible Conversation, Part I

At the end of June, 2010, our daughter, Sammi, was diagnosed with an inflammatory disorder called Eosinophilic Esophagitis. Her esophagus was coated in several places with the white blood cells called eosinophils, making it look something like eczema inside. These cells — these eosinophils, a word we had to practice saying, slowly — were poorly understood by even the experts on the disorder. Common knowledge at the time of her diagnosis was that they are the result of a protein intolerance.

Something Sammi was eating was making her body attack her esophagus. It could be more than one thing. It could be lots of things.

We were given two options for treating it. One was to begin treating her esophagus with what was known as a steroid slurry. The ampules of liquid steroid that were usually plugged into an asthma nebulizer would be cracked open, spilled into a dish in our kitchen and mixed with ten packets of splenda, the non-calorie sweetener. She’d then swallow this slurry twice a day, thirty minutes before eating. The steroid, mixed with the splenda, would coat the esophagus and act as a topical steroid paste, bringing down the inflammation in her esophagus. No one knew what the long-term effects of swallowing steroids would be, but they were 98% effective at resolving the symptoms of the disorder.

The other option was much more intensive, expensive, and time consuming, and it might not work. It was known as SFED — the Six Food Elimination Diet. Current thinking about eosinophilic esophagitis is that the most common triggers for the disease are the top six most common allergens: eggs, soy, nuts, fish, wheat, and dairy. Beginning by eliminating all of those foods from the diet for six weeks, and then adding each food back in, one at a time, with an endoscopy in between each one, this protocol would isolate the offending food or foods. For 80% or more of children, this worked to find the culprit or culprits, which could then be eliminated permanently from that child’s diet, leaving the child to lead an otherwise normal life.

We chose the diet.tomato

And then we had to tell her.

It is difficult to describe what those days were like before we launched into this plan, which we decided would be a family diet whenever the four of us were together. We read the packet mailed to us by the doctors’ office, explaining all of the things that would have to be removed from her diet. It was an exhausting list. Not only could she not have any of the “six foods,” but she could not have any products which had been made on shared equipment with any of those things. We were already vegetarians, and the doctor didn’t want us to add meat into her diet if it hadn’t been there before. What was left?

We made a list. I still have it, a yellow legal pad scribbled furiously with all the things she could eat. The list was bizarre as it was lopsided, lots of fruits and vegetables, few proteins. Lots of strange grains, few familiar foods. Once we had covered both sides of a piece of paper, we sat our children down one day on the kitchen floor to try to explain to them what was coming.

They were eight and not-quite-five. Being forced to stay calm for them, to focus on the positive, was the only reason I didn’t fall to pieces. We explained that we had good news; we now knew why Sammi’s food kept coming back into her mouth. Her esophagus was sick! We drew a body on paper, showed them where the esophagus was, drew a frown on it. We talked about allergies, about our friend’s daughter with celiac disease, about feeling crummy and then feeling better. We brought out the list of allowed foods and cheered along as favorites were listed.

Blueberries! YAY!

Tortilla chips! WOO HOO!

Black beans! Avocado! Peaches! Tomatoes!

We made Sammi promise not to eat food given to her by anyone but us. We made Ronni promise to keep an eye out for her sister. We made a chart listing all the new foods we were going to try, giving everyone a vote for each one (yuck, eh, not bad, great). We hugged them tight, and they went off to play.

I wanted to cry. I didn’t. I rolled my sleeves up, pulled out my cookbooks, and got to work. This diet, in one form or another, would last a full year, and it would take everything I had. There wasn’t time to stop and weep.

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Chivalry

The stories I tell about my daughter — and about my experience as her mother — feel as if they belong mostly to me. For so many reasons, I’ve turned out to be the person who’s handled the majority of her health issues, a role that feels as anachronistic as it does unchangeable. I’ve written very little about Sammi’s sister, Ronni, and perhaps even less about her father, David, except in first-person-plural, the other party implied whenever I write that “we” worried.

When we found out that Sammi’s aorta was the problem, it was a total shock — so shocking, in fact, that David had not come with me to the hospital that day. He’d been visiting his grandmother, who had pneumonia, and as a precaution against spreading it, he’d stayed away from the children’s hospital. My friend Cathy came with me that day. It was Cathy who sat next to me in the consultation room as the doctor explained what a double aortic arch was, and Cathy who looked me in the eye and told me it would be ok. It was Cathy who held Sammi as I called David at work and told him to get out a pen and start taking notes. It was Cathy who stepped outside with me and my woozy baby into the bright, mocking sunlight and steered me toward lunch, breathing, and reason. She was irreplaceable — exactly the presence I needed.

I remember not wanting to tell David, wishing I could give him another day without knowing what was about to happen. Nearly four years later, he had the chance to do that for me, and he did.

***

Every summer since Sammi was two, I’ve gone away for one weekend to the Indiana Fiddlers’ Gathering, a musical festival for traditional string music in a park over the grounds of the Tippecanoe battleground. As an old-time fiddler myself, it’s an opportunity to be immersed in the music I love, to feel the air on my skin in a way that mothers don’t often feel with young children at home. It’s my get-out-of-parenting-free weekend, once a year.

A week before the Fiddlers’ Gathering in 2010, when Sammi was four, she had her first endoscopy. The brusque and busy doctor had emerged from the operating room after the procedure with a glossy page of photographs of Sammi’s esophagus.

“See here?,” she said, pointing to a shiny spot in the photo, “This is something I sent out for biopsy. It could be yeast — that sometimes happens when the kids take these reflux drugs for so long — but it could be something else. We’ll let you know when we get the results.”

David and I squinted at the photo, “What could it be?” I asked.

“Well,” she said, a step away already, “there’s a chance it could be this thing we’re seeing nowadays called allergic esophagitis. It’s a big deal. Let’s hope it’s not that.”

“What do you do about that?,” I asked as she walked another step or two away.

“There’s a complicated diet. Sometimes they can give you some drugs. We have a specialist for it in our practice. Hopefully it’s just yeast.” By the time she finished talking, she had already turned her back to us and was walking away. A nurse walked us to the recovery room to sit with Sammi as she woke up.

For days, I listened for the phone call. My hand was on my cell phone, my ears prickling with the vigilance. On Friday, when I left for the fiddle festival, I told David to get in touch with me if the doctor called with results.

I phoned him on Saturday from my tent, asking “Did the doctor call?”

There was a pause. “No,” he said. “Sorry. Not yet.”

The weekend was soul-enriching, as I knew it would be. I arrived home Sunday, dirty and happy, unloading tents and camping equipment and my fiddle from the car. His mother was there for the afternoon, playing with the kids. David asked me to come up to our room. He closed the door. He said we needed to talk.

“The doctor called on Friday,” he said. “I didn’t want to ruin your weekend.”

Sammi had been diagnosed with eosinophilic esophagitis. It is, we would come to learn, a black-and-white disease: you have it or you don’t. The diagnosis is lifestyle-altering, unclear, prognosis poor, and ambiguously treated.

It was the end of our little world as we were coming to know it. David delayed that end for me by 48 hours. In the days that followed — frantic, drowning days — I knew that he had sat with that knowledge alone, no one to talk to, for two nights.

That was the most gallant, valiant, and noble thing anyone will ever do for me.

If I mention him very little in our story, it is partially because in just that weekend, he did enough for me to treasure him for many years to come.

everything

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A New Person

fourIn late April of 2010, our four year old daughter Sammi was a real person.

She was round-faced and giggly, with big brown eyes that squinted up at us in the sunlight under her blondish brown fluffy hair. She sang as she played, totally aware of the things she needed to master before kindergarten in the fall. She practiced tying her shoes with her tongue sticking out, just as her father does when he concentrates. She took a kids’ acrobatics class at a local circus school, charming everyone with her huge smile and bulldog energy, half the size of the other four year olds and twice the personality. Her voice sounded like a sped-up record — high and squeaky.

She was the mascot of her older sister’s class at elementary school, and teachers who knew Sammi would be coming as a student in the fall would wink at her as she and I walked through the hallways to volunteer or to pick up her sister. Her preschool was less than two blocks from the elementary school, and I found myself in a rhythm I could finally count as lucky. This is a good life, I often thought to myself. Next year, it would be easy — both girls in one school. For five days a week, five and a half hours a day, I would have time utterly to myself to work, manage our home, and maybe even volunteer in their school.

It would have been perfect, except that Sammi was still unable to function without a proton pump inhibitor (PPI). Take away her reflux medicine, and the gagging and coughing increased dramatically. Even on it, she still made a funny sound several times a day, after which, if asked, she’d matter-of-factly describe the last food she’d eaten rising back into her mouth.

Her pediatrician laid down the law: at four-and-a-half, Sammi needed to see a gastroenterologist again. She shouldn’t have infant reflux anymore.

We called the practice associated with the big children’s hospital in our area and were assigned the one doctor whose name we’d heard before. The rumors weren’t flattering — she was described as cold, bordering on rude, and very dismissive of parent input. A friend had told us this doctor insisted, over the phone, that she mimic the sound of her daughter’s retching so that the doctor could determine if it was really retching and not something else. Still, we saw this visit as a formality, at most a chance to get a more appropriate prescription for Sammi. How much time would we really need to spend with this doctor, anyway?

Unfortunately, this doctor was unwilling to talk about medication. “She shouldn’t be on a PPI anymore,” she told us. “I need to scope her.”

Scope her. It sounded vaguely alien to me — like probe, maybe. What she meant was that Sammi would undergo an endoscopy, to take a look at her esophagus and see what was happening in there to cause so much reflux. While they were in there, Sammi’s old otolaryngologist — the same one who had diagnosed her strange cardiac anatomy more than three years earlier — would perform another bronchoscopy to see if her trachea had opened up further.

This would make the fifth time I’d stand at Sammi’s side in an operating room and sing to her until the anesthesia knocked her unconscious. It would have been the sixth if they’d let me in the cardiac theater before they repaired her aorta in 2006.

This time, though, Sammi was a person. She wasn’t a baby or a toddler. She was four, and she talked with me, and we planned to open a restaurant together one day called “Sammi’s Restaurant: It’s Free!” She held my hand while we walked in a circle from home to preschool to her sister’s elementary school and back. She was looking forward to turning five, when she’d be allowed both to chew gum and to go to kindergarten.

It was happening again. It was all happening again. And now it was happening to a new little friend.

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Vocabulary

artAll families I know develop — unconsciously — a vocabulary specific to them. This can include everything from pet names to invented foods to the life-long adoption of mispronunciations from toddlerhood. Being in a nuclear family — a new nuclear family, not the one in which we grew up — is, in many ways, like having a glorious lifetime membership in a club in which we got to make all the rules and invite in all the members ourselves. By nature, it is empowering for the adult.

The innocence of this family vocabulary can seem silly from the outside because, most of the time, these new words are like long-standing and elaborate inside jokes. We have words like that in our family, too. The exception, for us, is the word “urp.”

“Urp” is the word we invented to describe the sound Sammi made when she had what we assumed to be reflux. Babies with reflux are a known entity — the baby silently jostles his own torso up and then — sometimes also silently — a stream of spit-up drools out, to be wiped away by an ever-present burp cloth. Sometimes, this baby-reflux interferes with sleep and comfort and so the baby is given reflux medication. This was what happened to Sammi at six weeks old; her reflux was silent and, oddly, never resulted in spitting up. She constantly smelled like sour baby vomit, but it was on her breath and not making up to her mouth.

Her pediatrician put her on a reflux medication. It got changed once when she was around a year old, then again at two years old, when our efforts to take her off of it were met with the constant sound we named “Urp.” The pediatrician — and we — had expected her to grow out of it, as babies do, but whenever she stopped taking it, there it was again: “urp.” It was a gurgling sound, followed by a hard swallow and a series of coughs. It was unnerving.

When she got old enough to talk, we would sometimes ask her about it. We’d hear “urp” and ask if she was ok.

“Jus’ my cereal,” she’d chirp, going back to her toys.

“It’s jus’ my yogurt.”

“It’s my dinner in my mouth,” she’d say as we pulled her pajamas over her head.

It didn’t seem to bother her. Sometimes it was eight or ten times per day. She never vomited, she never complained of pain, she never woke up gagging. Still, we worried about it. We had her bed propped up on an angle, gave her first the antacids and then the proton pump inhibitors. The medicine made the sound less frequent than when she was off the medicine, but nothing truly made it stop.

Urp. Just my breakfast.

Urp. Just raspberries.

We asked ourselves constantly, is she urping more lately? Why is she still urping? She’s three. Shouldn’t she have outgrown this?

We worried. We were professional worriers. Her pediatrician, both perplexed and long-accustomed to the mysteries of childhood illness and behavior, just kept telling us to wait a few more months and try again to take her off the medication. We repeated that cycle for years.

Urp. Just noodles.

Urp. Just water.

Just wait. So we waited.

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Tandem Tantrums

tantrum

I never felt alone again after someone else admitted to me that she didn’t know what to do.

By the time Sammi was three, I had established a work-from-home-parent setup in our new town. Her big sister was in the early years of grade school, and Sammi’s visits to the school every day by stroller brought both of us into a brand new world of other human beings. Living as we had in seclusion for the first years of her life — both due to medical necessity and then the secondhand isolation that came from it — I was unprepared for the beauty that came with speaking to other adults every single day. Many of the people I met were like me, pushing strollers with younger siblings to the playground each morning and afternoon. Our walkable public school made for a glory of impromptu social gatherings. It was only a mile from our previous home but may as well have been another country from it in terms of the effect it had on my own mental health. I was able to connect regularly with a variety of other parents for the first time.

Also for the first time, I heard complaints about their children that echoed my own. One winter afternoon when I had managed to cram Sammi into winter clothing and push her rickety stroller the four blocks to the first grade exit door where her sister would come out, another parent with a baby in a stroller and a three year old boy dragging behind her waved at me. Her daughter and my older daughter Ronni had established a mutual admiration society which would eventually lead the way to one of the best friendships of our family’s life, but truly, it began for me when this mother answered my “How’s it going?” with the following lightning bolt of connection:

“How’s it going?! I’m done. I give up. I’m taking him in to be assessed for sensory issues. I can’t take this craziness anymore.”

Her son refused to wear boots. Or a coat. Or socks. I may have the details wrong, but I heard in it the same line of edge-balancing I felt in my time alone at home with Sammi. Sammi would not get dressed. Sammi would not go to sleep. Sammi would not eat. Sammi would not leave a place we were, or enter a place we needed to be.

She was also, like my new friend’s son, breathtakingly cute.

I couldn’t see the struggle in my friend’s son’s round, gorgeous face. No one could see my blond angel for the often furious child she was at home. It was invisible and, as a result, so was my real state-of-mind most days when I entered that playground. I waved, I connected, I made plans, I shared bags of grapes. Under the surface, I was desperate not to go home to another evening of screaming tantrums that reminded me so terribly of the sleep training that nearly killed her, and me.

Sammi’s tantrums regularly included self-harm. She smashed her head, over and over, into anything she could find — hard edges, hard floors, wood tables, toys. I wondered if she was trying to finish what her crazy cardiac anatomy had started.

That friend’s admission that she, too, fought the demons in her head — and the one small demon who lived in her house — changed my whole approach. When I found that she had years of experience in mental health services and even that didn’t keep her from feeling the level of frustration I did, it cemented in me the need to reach out and have things assessed. Once again, I called in the experts. Once again, I admitted that I couldn’t fix things.

Only this time, I was not alone.

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