Fast forward to 2004….
Months after Stella was born, things got pretty chaotic. My once-private little life was invaded by a veritable army of home health nurses, doctors, cardiologists, birth-to-3 teachers (who knew that was even a job?) a speech therapist, occupational therapist, et cetera.
But all that is just background, another story for another day.
Right now I am remembering a newspaper article my mom brought over to me, shortly after Stella was born. She, like her mother before her, is a Clipper. She sees articles in papers and magazines, and clips them out to share. Real newspaper. Real scissors. The pre-internet sharing of stories.
Anyway, she clipped an article about a family whose child was diagnosed with severe food allergies.
“This might make you feel better.” She said. “Other people have troubles, too. I’m so glad you don’t have to deal with this!”
I read the article with sadness and a bit of trepidation. The poor family had to separate the kitchen into two parts: allergens and non-allergens. Separate toasters, separate knives, separate jars of jam. How could a parent keep all that going perfectly? I knew that there was no way in the world I could handle that kind of intensity in the kitchen!
In September, Stella turned nine months old. My smiley little elf was growing.
“She needs Cheerios,” the occupational therapist said. “Great finger practice. Picking up those little bits of cereal will really help her eye-hand coordination.” So we started the baby food routine. A little bit of this, then add a little bit of another, then soon we had worked her way up the food chain to Cheerios. We celebrated when she sat at her high chair, gingerly picking at the little pieces. We cheered when they made it into her mouth. Even the dog rejoiced, because now magical delicious bits of kibble rained down from Heaven every time Stella was put into her high chair.
By October, she was getting much better with her fingers. But somehow, in those months, she had developed colic. Every evening, the sweet little cherub would tighten up, screaming like a fire engine. There was no consoling her. Tears rolled down her cheeks and mine, too. I held her and rocked her, singing every song I knew. Around 2:00 a.m. she would fall asleep from exhaustion. Night after night, the same crying. A nurse taught me how to hold her cradled on my forearm, which applied pressure to her belly and seemed to help her calm down. None of the doctors in our life had any answers. Some of my relatives’ kids had spent their infancy crying, too. Colic consumed my every evening, and I began feeling stretched and helpless. How could she be so happy in the day and so in agony every night? Though she couldn’t speak to me in words, it was obvious she was in pain. How long could this last? November was horrible. Thanksgiving was just juggling kids, trying to cook and keep Stella from her now inevitable nightly screaming.
In December, we scheduled a visit to a Special Needs clinician in the city. There had to be something someone could do about this. At his initial exam in January, the doctor asked many questions. “I am going to test her for Celiac Sprue,” he said.
I had never heard of it.
By February, Stella and I were following up in the office of a pediatric gastroenterologist. “She does have Celiac,” he explained. “As far as diseases go, this is the best one to have. There are no medications. That means no side effects. All you have to do is feed her a gluten free diet. I’m sorry that I can’t tell you what kind of food you can buy. (This was 2005; food ingredients labeling laws had not yet been passed. There was no other way to learn what was in the food you purchased.) You’ll have to call the food companies to find out if there is any wheat, barley, rye or oats in each product. And you’ll have to make most things homemade. You’re about to become a great cook of plain meat, rice, and vegetables, because your daughter needs you to do this.”
Good grief. I’d spent the previous ten years learning how to cook and bake. I could even make French eclairs with Bavarian creme from scratch. I could easily whip out a batch of my grandma’s cinnamon rolls and homemade bread without using a recipe, I’d made them so many times. What was this Celiac?
“Oh, and don’t worry,” the gastroenterologist added. “No one else in your family will have this. Stella probably just has it because she has Down Syndrome.”
Famous last words.
That was the day I began reading labels and separating foods. By that evening, my kitchen looked like a bomb had gone off in it. But I had one tidy little cabinet dedicated only to Stella’s food. Our first Gluten Free Cupboard. I taped a sign on the front of the doors that said “Stella’s Food.”
Our Separated Kitchen Nightmare had begun.
Did I mention that at that time, I had five children, age 10 and under?
Feeding time at the Mahnke Farm became unbearably difficult. Two peanut butter jars. Two butter dishes. Two kinds of bread: one homemade and deliciously whole wheat, the other was some crusty, cardboard like expensive brick of Gluten Free mystery bread. I was frantic to keep things separate so that Stella wouldn’t get bread crumbs or gluten in her diet. If she did get wheat or gluten, it always gave her about three hours of agonizing tears. I felt so guilty, like a complete failure of a mother every time she got cross-contamination. I tried many different methods. But Stella’s cupboard and our cupboards didn’t stay separate for long. The two little ones loved to crawl inside and throw things out. Then the next kid would come along and dutifully put it all away, but in the wrong cupboards. I bought colorful stickers and stuck them all over Stella’s food so the kids would know. But they liked the stickers, and the toddlers put them all over every food item. I bought Mr. Yuk stickers next. Remember those? Big, green circle stickers of a yucky face? Try making a kid eat a can of wheat noodle soup that has a Mr. Yuck sticker on it. Uh uh. The next effort was Sharpie markers. Anything that came into the house that was wheat got a large, black “X” drawn on it. Cereal? X. Macaroni and cheese? X. Everything prepackaged and convenient? You got it, an X. Soon Stella’s little cabinet was full of little else but raw potatoes. She thought it was great fun to open the door, grab a potato, and crawl away as fast as she could. She learned how to throw from tossing hundreds of potatoes around the kitchen. They were her favorite food and probably one of her favorite playthings.
She started to heal. Slowly, over the next two months, Stella stopped the nighttime screaming and calmed down once again. She had peaceful evenings, hugging and smiling again. She was better! The gluten free diet was working! We were so pleased.
But it seemed at least once or twice a week, she was getting cross-contamination from somewhere. Play-doh: made of wheat. Finger paints: wheat based. Even foods like yogurt and soy sauce and canned peaches often contain trace amounts of gluten that would cause Stella pain. Worse yet, she was crawling all over the house now, and if one of the other kids dropped crumbs anywhere, Stella would find them first. If we went on an outing, people like to give little kids a sucker or a cookie. I couldn’t take it anymore, I felt as sorry for myself as I had for the family in the newspaper clipping my mom had given me. I was super pregnant again, maniacally scrubbing the kitchen floor with Clorox wipes every time someone pulled food out to eat. I could barely fit under the kitchen table. And guilt consumed me every time Stella got sick. Something had to change.
So we did what we had to do: No gluten in our kitchen. Period. It was tough, but it worked! Stella no longer got sick from random crumbs. And my stress level and guilt went way down, because Stella was a peaceful, happy baby again.
We did find a compromise for the other kids, who still liked a doughnut or a sandwich now and then.
Our tub had a spray hose on the shower head, which made it very easy to spray the tub clean. So every time the older kids wanted to eat wheat, they got to eat, sitting perched on the side of the tub. In five minutes, I could spray it all clean, with no crumbs to make Stella sick. And with the bathroom door shut, Stella didn’t see them and know she was missing out on a treat. Many a caramel pecan roll was eaten in that bathtub!
The solution to all our problems was so simple. The “best disease to have,” the pediatric gastroenterologist had said. He was right. Give up everything you like to bake and eat, and your daughter will be happy and healthy. Simple. After half a year of Gluten Free life, we had GF cooking down to a science and an art. Stella was growing and happy. The other kids were happy with their contraband snack location. And I was happy to not be scrubbing the floor every half an hour. We were gluten free pros.
And we were just about ready for our turn to host the big Thanksgiving feast for all our extended family…