Purging

I am the type of person who likes to have a handle on things and it doesn't have to be perfect or complete but I need to have some inkling of what to do to wrap my brain around any sort of challenge. Going gluten-free was a mountain and, like any climber, I prepared in stages. No one succeeds in scaling a mountain by throwing themselves against the face of it without being mentally and physically prepared.

The first thing I did was to purge all the gluten I could find in my pantry


We sorted the piles into those that had gluten and those that didn't and created a separate pile for those that were unknown


In the end, we had a relatively large amount of food that we were able to keep (and also a large amount of food that was now "homeless")


Next, I started reading. I devoured all the information I could find online and in the library. I scoured ingredients from health food stores and blitzed grocery stores to see what was available. I was insatiable to know the best way to cope.

But the true test was the food itself. Could I help her forget the sumptuous softness of bread? the crispy joy of cereal? the sultry smell of freshly baked cookies? And it turns out that watching me try was enough for her.

We made bread

and muffins

quesadillas

homemade hamburgers

even pasta

BUT birthday season was upon us and right away the challenge was at the forefront: birthday cake--the penultimate baking glory, worth 364 days of anticipation?


experimenting first with packaged mixes and then going one step further

The learning curve of this mountain is steep and there have been errors already

but it is a labour of love (Julia noticed the heart in the batter right away)

And every day since has been a game of trial and error, of finding new favourites and of leaving behind old ideas. There is nothing easy about this life, no matter how close everything gets. But if it gives my girl back her smile, the sacrifice of every crumb is worth it to me.

Endoscopy

It is a restless night that precedes any medical procedure, I think. The fact that we have to be AT the hospital for 6am doesnt help matters. If I slept in, if I missed the appointment, who knows how long it would take to get in again? The pressure is on in so many ways and it is hard to get settled in.

5 am comes too soon and we roll quietly from the bedroom and exchange quibbles about company in the hospital then straggle to the car; apprehensive and afraid. The morning light has already tinged the day with pink streaks in the clear blue sky--it is a beautiful day and the streets are mostly deserted. I fiddle with the radio, trying to make small talk with Julia as we trundle along the empty boulevard but she isn't interested.

We arrive at the hospital and flounder a bit with the ticketing system (bring it? leave it?), glad for the parking spot right by the door.

The dayward is already busy--other anxious kids clinging to anxious moms. Julia looks as though she'd like the floor to swallow her up and my words of reassurances sound hollow even to me. The line up lengthens behind us, snaking out into the hallway, and I try to point out other kids of the same ages. Julia looks at me silently and I pull her close.

My parents pull into the room, smiling, sunshine and roses; I try not to sigh too loudly. It is a mix of emotions to see them. I hand over the baby and watch them wheel to the far end of the waiting area. The lady doing the registration beckons us and I grab Julia's hand as we step up to the desk--it feels papery and dry and small. The nurse calls our name before we are even done registering. Julia whimpers as I answer simple questions and fish papers from the diaper bag and again when the hospital bracelet is secured around her wrist.

We wait in uncomfortable silence for the nurse to reappear. When she does I can feel Julia's anxiety palpable in the air. It feels cloying and desperate even though the nurse is comforting and kind. She shows us to a cubicle and directs us to a set of striped pajamas. There is a set too small and a set too large. More whimpering. Embarrassment. Fear.

The doctor who is doing the procedure introduces himself--he is a middle aged Indian man with kind eyes and a wry sense of humour. He tries to soothe Julia's anxiety and his answers help my own. The nurses tape fat globs of emla cream to the backs of Julia's hands and she whimpers again.

I coax Julia into the clothes--she firmly rejects the offer to wear a mismatched set--and stumble our way back to the waiting area. Julia is mortified at the thought of being in public wearing someone else's pjs. We see that Auntie Rachel has arrived and I am immediately glad for her company. A smaller kids area is blessedly empty and she hunches in a chair, a shrinking stripey wallflower and even Auntie Rachel's warmth does little to comfort her. Small smiles for the owl I brought for her hospital surprise helps to ease the awkward conversation and too soon we are called.

She sits on a hospital bed, wheeled into an operating room filled with people.

Their faces are friendly and the chatter surrounds us but their hands are busy and business like in their efficiency. The anesthesiologist introduces himself first to Julia and then to me as "Bob" and Dr. Persad's eyes smile at us above his green mask. I brace myself for a shitshow as they prepare the IV and I see Julia clench up. I will her silently to be brave and to be strong. They are so good about showing her all their equipment; the straw (not needle) that will deliver the medicine that will make her fall asleep.

"What if I won't fall asleep?" she wonders out loud. But as quickly as they slide the IV into her veins she is out and I ease back down the hall owl stuffy and pager in hand. I meander through the food court, suddenly hyper-aware of all the things that have become off-limits to her. I dont even have time to eat more than a bite of breakfast when I am called back. It is done and she is already in recovery. It has taken less than 30 minutes.

I hurry back and find her already awake and amazed "I cant believe it is already done. I dont even remember anything but my throat is sore"
The nurse offers her a popsicle and I nod when her eyes slide over to me to see what I think of that idea.

I have a quick chat with the doctor who reassures me that everything went smoothly and he didnt see anything alarming. The lab biopsy would return in a week with the results. Julia finishes up her popsicle and when the nurse urges her to have one more, she hesitates.

"You can have as many popsicles as you want. Mom and Dad's rules dont count here" the nurse declares. Julia agrees to "just one more".

By the time we leave, her spirits have risen considerably. She feels stronger and braver and happier. We leave the grandparents and make our way to the gift shop for the promised treat (she chooses a small stuffed owl) and head back to the food court to eat breakfast. Auntie Mellie meets us and the day's worries seem to fall away and dissipate in the warm May sunshine.

Frightened

I remember moments of the first day that Julia had a seizure. She was in the backseat of our gold Echo. We had just gone to the store and she was chirping about some absurdity and I was enjoying the wonder of her company. She was 18 months old.

Afterwards I felt exhausted by the emergency room visit and so afraid of what had happened. I was brushed off by the doctors "febrile seizures are nothing to worry about ma'am"

Years of moments passed, fraught with unknown frights and unanswered questions. I wanted to trust the doctors, to not fight the system, but somewhere I knew that the things they were saying to me just didn't add up. So I kept pushing and pushing. Wanting to know more, wanting better solutions to her mysteries.

And when my husband finally got to hold her in the throes of her seizure and felt the limp weight of the post-ictal state, he joined me in wanting more than pat answers. But we didnt know how to break down the barriers that were up. We didn't know what questions to ask, what answers rang true, what specialist had the key.

And even after she was hospitalized and was reacting to the drugs they were giving her so much that she was awake only 2 hours out of 24 every day, they still didn't have any more to offer us than "We don't really know." So we kept fighting to know more and when they finally agreed to send her for more definitive tests I was struggling with whether or not I was getting enough.

When she was diagnosed as having epilepsy and we declined the drug treatment plan I felt like maybe we were reaching the end of the tunnel. I bucked the school system that wanted to label her and resisted the urging to have an aide follow her around. I wanted, more than anything else, to have her be normal,

As the episodes of seizures decreased, we thought that we were finally in the clear. But then we began to see that things still weren't easy, that she still struggled and had difficulty coping with the small things in life and little by little, our happy social butterfly disappeared and we got an anxious and shy turtle who wanted to hide from the world instead.

Months slipped into years and I tried not to let myself show too much disappointment that her character seemed to have shifted so much as she grew. I told myself that my job as a parent wasnt to make her into something that she wasnt and that I should embrace all that she was.

But I never thought, truly, that this was what Julia was. She cried and felt out of control, she had stretches of anxiety so intense that she couldnt move past them even when she wanted so badly to. It was like Julia was locked behind something else and we just didnt know how to let her out again.

Mounting frustrations started slowly, almost inconspicuously, as she had accident after accident. And we were most upset with that seemed like her inability to be truthful about it all--"I didnt know I was going" "I already went a minute ago"--and there was no room for any other explanation. So when she asked to see a doctor about it I had to shift my perspective, Was it possible that there was more to the story than just being unwilling to use the bathroom?

5 minutes was all it took for the doctor to diagnose her. Encopresis: the involuntary stooling of children who had already been potty trained. An xray showed a solid white mass in her abdomen; her small intestine so stretched out that there were no signals telling her body that she needed to go. And suddenly all the things she said really were true and we felt the burden of guilt so so heavily. The solution? Laxative. Daily. For TWO YEARS.

We instituted a strict regiment of high fibre foods and took away her beloved dairy--no milk, no cheese, no ice cream. We plied her with cereal, breads, oatmeal and cookies high in wheat and mulitgrains. We didnt care that it embarassed her to be asked mulitple times a day to go to the bathroom "just in case." We wanted to fix what we thought we had broken.

Instead of getting better, though, it seemed to get worse. Crying escalated into screaming; tantrums became threats of self harm; angry moments became rages. And then sorrow. And then depression. She cried herself to sleep, she pushed herself away from friends, from peers, from family. She began to ask me to help her not be her.

So before the two years was up, we went back. I need more answers. This wasnt enough anymore. I needed to know where my sweet girl had gone and how I could get her back from the edge of this darkness that I was myself enshrouded in.

A simple screening was meant to eliminate the possibility of celiac disease. I hadnt ever heard it mentioned once in all the conversations we had over time. I demanded another xray to see how much progress we had made by using the laxative for the last year and a half.

3 nurses and I held Julia down so that they could do the blood test. Her anxiety level was through the roof. Even the xray scared her.

When her numbers came back the doctor called me. (Never a good thing when they call you). Her lab result showed that she was crazy positive for celiac. And everything we thought we were doing right for the last year may turn out to be doing the most harm. The guilt is hard. And now we have a new reality.

One that scares me and stands to sheds light on everything--all the crazy behaviours, the lack of weight gain, the fatigue, the anxiety, the accidents, even the epilepsy. We have one more test and while it scares me too, it feels right to keep pushing to the end. I need to know that this tunnel will lead me to where I can start to discover my girl again. And where Julia can start to come out of her turtle shell and become the girl she wants to be.

New beginnings, perhaps.