Last chapter I introduced Chana and a brief overview of her journey from my perspective.
Chana was a real foodie.
I am not.
I couldn’t relate to the hours spent looking up recipes, scouring grocery stores for that elusive (expensive) ingredient. She even toyed with the idea of making pasta from scratch. I was annoyed with the cost of specific ingredients (can you even guess how much condensed chalav yisrael milk in Israel costs?)
I am the type of foodie who enjoys food, but can’t really be bothered to search (or pay) for the more expensive shitake mushroom when regular button mushrooms are so easy to find.
However, her talent in the kitchen brought her so much joy, and I enjoyed watching her develop this part of herself. And, sure, the help with the cooking was great – right up until I was left with a sink full of dishes and the age old ‘I’ll clean up when I get home’ promise that almost never came true.
Her gourmet dip making meant everyone had a more enhanced Oneg Shabbos. My husband crowned her “Dip Meister.”
Ahh, what I wouldn’t give to go back there. I would happily wash Every. Single. Dish.
What started happening during this time were her stomach aches. Periodically, she would complain that her stomach just hurt. I offered to go to the doctor. I offered medicine. She repeatedly told me that “nothing helped.” That gave me (false) permission to brush it away.
My sympathy and patience steadily started to disappear. After all, one hour she would be curled up in bed. An hour later she would be out with friends going for a walk.
This went on for at least a year and a half. These inconsistent stomach issues would seem to resolve themselves at the first enticing invitation. Looking back I am horrified to share that I chalked it up to her sensitive nature and my false belief that it really wasn’t so bad, she was being dramatic.
It was finally at a doctor’s appointment where we met with a new pediatrician. She spoke to Chana. Asked her some questions and then asked me if she had ever been tested for celiac. She hadn’t. So, along with a CBC and other blood work she also ordered the titer for celiac.
The numbers came back sky high. We met with a gastroenterologist. We scheduled an endoscopy. The doctor who performed the procedure said, “We can’t officially diagnose until the biopsy comes back, but it’s pretty clear she has celiac.”
When we finally met with the gastroenterologist again, we weren’t surprised by the diagnosis. Our daughter could never safely have gluten again. My heart sank. Even though it wasn’t a surprise, I felt a horrible combination of guilt and regret over how I had dealt with all these symptoms over the last couple of years.
Our pasta and bread loving foodie daughter would have to drastically change her diet.
I was devastated.
She strangely, was not.
The gastro suggested a “one last piece of pizza.” She declined the suggestion. Since her numbers were so bad, he also said that she couldn’t have gluten free oats for at least nine months to see if her numbers were going down. The only time she could wash until then was Leil HaSedar. Her face remained immobile.
We got in the car to go home. She sat silently in the back seat as my husband and I tried to figure out how the kitchen and cooking were going to have to change. I silently snuck a glance at her as we drove down the highway. Her blank, emotionless face was periodically illuminated by the street lights as we drove.
“Wow, this is pretty devastating. I’m really sorry this is the story.”
“It’s ok. It’s what Hashem wants.”
“True, good point. But it is totally ok to be upset, disappointed, maybe even a bit angry. You love your bread and pasta.”
“It’s ok. It’s what Hashem wants.”
“Let’s go to that fancy healthy food grocery store tomorrow. We can see what they have. I bet we can find some good gluten free alternatives.”
“Okay. Whatever.”
I stole a glance at my husband. He raised his hand to end the conversation.
When we got home, we went to our room. “Her response is not normal.”
“She needs some time to absorb it. She’ll be fine,” he said.
My gut told me otherwise.
Looking back, that was a pivotal day. This may have been an imperceptible beginning of her illness.
She started to get stressed, needing to look at food labels. She watched me put stuff in the oven to ensure that I didn’t put the gluten free food in the oven at the same time as the non-gluten free food. The only expression of sadness I ever saw from her about this was that first Shabbos when she couldn’t wash on my homemade challah (which I have to say is pretty awesome*).
Food became a source of complaint, “Gluten free pasta is mushy. The bread tastes like potato starch. This pizza we ordered tastes like cardboard.” I felt at a loss. She wasn’t wrong but what could I do?
Her enthusiasm for recipe searches, grocery store ingredient hunts and sparkle in her eye around cooking started to fade.
Later on, when we started going to the psychiatrist, meeting her therapist, we were all at a loss as to what could have happened that could have affected Chana so badly. Was there a participating factor? Chana denied any childhood trauma. We couldn’t think of any trauma. The therapists also tried to find out if she was hiding anything. No one could think of anything.
However, the image that would stay in my head was Chana sitting, face immobile in the back seat of our car.
I don’t know for sure. Lots and lots and lots of kids have traumatic or significant events in their lives and are fine. Could a significant event have triggered the events that would take over our lives? Could a celiac diagnosis have been that trigger? Or, was her eventual anxiety and depression the result of a genetic predisposition and her devastation of her diagnosis?
I will never know. But, given what we were about to go through, it doesn’t really matter.
*If anyone wants the challah recipe feel free to email me.