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.