kids | Emily's Posts

“Just ignore her. She’s doing it for attention.”

These were the wise, educated (!!!) words of our pediatrician, who had just finished examining Nora (3.5 years old at the time) and who determined there was absolutely nothing wrong with her.

Me: “So…just ignore that she’s suddenly pooping her pants multiple times a day? Even though she’s been fully potty trained for a year now?”

“Yes”

“And the constant complaints of stomach aches? And that her ‘legs feel tired’?”

“Attention.”

“You’re sure?”

“Look, you just had a baby. This is classic behavior in reaction to having a new sibling. Just ignore it and she will adjust.”

So we followed doctor’s orders for about a month.

And in a super unfuckingsurprising turn of events, it got worse.

And here’s the thing– Nora absolutely LOVES her baby sister. I mean, I know all siblings love each other in their own way, but Nora loved Sophie immediately, in a freakishly angelic-like fashion. I couldn’t understand how a former only child of 3 years could be THIS cool with the helpless, screaming, spastic alien we suddenly brought home to live in our house forever. But Nora was the best.

All she wanted to do was help take care of “Baby Sister”– cuddle with her, feed her, assist in diaper changes and bath time. I mean we took these pictures on WEEK ONE:

Could you die?!

And while yes, there were some rocky moments….

….Nora found the humor in them and always tried her best to be a comforting big sis to the atomic bomb that was newborn Sophie.

So the whole “doing this for attention” thing wasn’t really adding up. Honestly, that’s not really Nora’s style (I can already tell it’s definitely going to be Sophie’s M.O., though, so I’m prepared to grab a hat and hold the fuck on). I had read all the literature about how older siblings often go through a period of “regression” when the new baby arrives, but something in my gut told me this wasn’t that.

Also, you know what’s really hard to “just ignore?” Shit. Like– literal shit.

Eric and I were doing our very best not to show any visible frustration or, worse, to shame Nora for the accidents, but bottom line is that we couldn’t go anywhere or do anything without bringing at least 5 changes of clothes, a travel potty, wipes, and plastic bags for poop explosion storage. Any activity outside the house was interrupted by at least one accident, followed by a 5-10 minute water-wipe “shower” in the nearest public restroom or, more frequently (and fun!), the trunk of our car.

It was exhausting.

But moreso, I worried about the social aspect, and the eventual toll it might take on her self esteem. Nora was still at the age where other kids in her class weren’t really noticing or caring, but I knew that would only last for so long. At some point, she would be the smelly kid, and I’m sorry but that shit (again, literally) was not happening on MY watch.

So Eric and I did the uncomfortable but necessary work of telling the doctor “Hey, I know you learned a great deal of science-y and doctor-y stuff during the insane amount of schooling you went through in order to become a medical professional, but we know our daughter best, so please take your ‘just ignore her’ advice and

Or maybe we said, “We feel strongly that Nora’s symptoms are not for attention, and we’d like to kindly request further testing, please.”

I can’t remember the exact wording.

We requested a blood test to check her white blood cell count and rule out anything super scary, like, I don’t know, belly button cancer (not a thing). The doctor felt this was entirely unnecessary, but, I presume, wanted us to shut the fuck up, so agreed to a blood draw. She warned us that kids her age don’t do well with blood draws, and we reminded her that Nora went through two surgeries before the age of 1— she was a badass and could handle anything.

Except a blood draw, I guess 😬. She was an absolute feral hyena.

But it was worth it. Because when the results came back, it turned out her white blood cell count was completely fine– no belly button cancer here! Her Tissue Transglutaminase IgA antibody number, however, was off the fucking charts.

“Hey, um, wtf is a Tissue Transglutaminase IgA antibody test,” you ask, because you’re not a doctor (although, as evidenced by this story, apparently ANYONE CAN BE). It’s a test done to detect elevated levels of certain antibody proteins, which would indicate an immune reaction to gluten. In an average person with no gluten sensitivity, numbers would be between 0-3 U/mL. Again, in layman’s terms– a normal, healthy number is between ZERO and THREE.

Nora’s number was over 250.

So when I said her number was off the charts, I mean her number was literally off the charts— the chart goes up to 250, and she was beyond 250, so we couldn’t even get an exact number, just a general “well this ain’t good!”

A follow-up endoscopy confirmed a clear diagnosis of Celiac Disease, which is an autoimmune disorder triggered by the consumption of gluten. It is not just a “gluten sensitivity,” it’s a serious autoimmune disease– even the tiniest amount of gluten exposure can onset symptoms (which include abdominal pain, chronic diarrhea or constipation, nausea, vomiting, weight loss, fatigue, depression/anxiety, joint pain, mouth sores, rash, nerve damage– just to name a few! 🤗) and those symptoms can last for days or even weeks. Untreated, Celiac Disease often leads to complications such as malnutrition, bone weakening, infertility, mental health disorders, cancer, and nervous system problems. In other words– scary shit. Shit that I do NOT wish for my child.

Since going on a gluten-free diet after diagnosis, Nora’s symptoms have improved dramatically and her blood work looks significantly better. However, avoiding gluten entirely can be a tricky endeavor, as issues of cross contamination during food preparation and “hidden gluten sources” that aren’t as obvious (i.e. salad dressings, soy sauce, even playing with playdoh) can trigger the disease. We are on a constant journey trying to figure out how to keep Nora healthy.

But this is not a sob story. Clearly. While we hate that Nora has to deal with any kind of lifelong health issue, we are of course grateful she wasn’t diagnosed with something worse. Celiac Disease, can, for the most part, be controlled with vigilance and self-control. We thought the self-control part would be hardest to uphold, but it is incredible how responsible Nora is about avoiding gluten. She is her own best advocate– she will never accept food from anyone, no matter how delicious looking, until she confirms it is gluten-free, and she has, shockingly, never once complained about the fact that she can’t always eat what her friends are eating. We show up to birthday parties and social events armed with our own gluten free pizza and cake (plus an emergency car trough of snacks), which never look quite the same as what her friends are eating, but she could care less. At only 4 years old, she truly astounds us every day with her maturity and flexibility.

But mostly we are just so beyond relieved that she is feeling better and thriving. We know that different phases of childhood through adulthood will present new and unique challenges for her as she manages her disease, but we are so proud to be her biggest supporters and cheerleaders as she finds her way in this often unaccommodating, gluten-filled world.