Goblins, Goldfish, and Other Monsters

Yesterday I wrote about Little One's imaginary demons. Today I am thinking about Her real ones. A little while ago, Little One and I spent a day in the hospital with Her pediatric allergy specialists. After the exam She was poked 5 times in the back, leading to 20 minutes of intense itching She was not allowed to scratch. Then She had Her blood drawn. Good times!
But She was so brave throughout all of it, even telling the nurses "Ten tu!" afterward, when they awarded Her with a sticker. I was pretty cheery about the whole thing too, considering, because J and I were feeling very hopeful that it would all end with some good news.
Most kids outgrow most of the food allergies that Little One has. Though Her doctors have always told us they can't promise this (because they've never seen anyone so young with these problems, or anyone with such a severe case) they have always told us to maintain the hope that most of the dangers will pass in time.
These tests from our day o'fun measured not just whether She is still allergic to these things (peanut/nuts, milk/dairy, soy, egg, pineapple, citrus fruits, strawberries), but also how severe the allergy is to each one. We were sincerely hoping, even expecting, that Her levels had gone down since the last round of tests. While She's still too little for that news to mean She could have those foods, it would at least be a very encouraging sign for Her future.
Well, the results are in. The great and fantastic news is that Her egg allergy has abated some. Her level of allergy to egg is still in the "high" category, but that it's going down is a great sign. Yay for moving in the right direction!
The bad news is that all of Her other allergies have become worse. In some cases, far worse. The ige level is an indicator of how severe an allergy is. 6 is considered the high end of the scale, "very severe". This is what Her milk allergy was last time. We were sure it had gone down. Unfortunately, it has tripled. And Her peanut allergy? IN THE 8O'S. Which is so far off the chart, it can't even see the chart anymore. Strawberry and citrus fruits like lemon are also outrageously high.
The specialists aren't sure why things have become so much worse. It may be because, as careful as we are, She has been repeatedly exposed to these things by picking up crumbs on the floor, or getting touched or kissed by people who have been handling or eating those things. The problem is that every time She comes in contact with one of those foods, Her body becomes more allergic to it.
There was one time She was accidentally given beans laced with cheese and milk and had several bites before we realized it. Because She was totally fine, we assumed Her allergy to milk was gone, or at least lessened. But the doctor explained that cooking denatures the milk proteins that cause the allergy, making them less dangerous. And that that event may well be the reason Her milk allergy is SO much worse now. Meaning that if She ate the same thing today, it could kill Her.
And Her allergist was very, very sure to drive home to me the concept that these foods can kill Her. She kindly but firmly scolded me, reviewing Little One's chart, letting me know that there have been times we didn't use the epipen when we should have. Times when we were, as she put it, "sheerly lucky" that Little One's body made enough epinephrine of it's own for Her to survive, and that I had, as she put it, "Taken a chance which could very well have ended with your child dying". She made me practice jabbing Little One with a de-clawed epipen until she was convinced I was comfortable enough to do it in real life, at the first sign of needing it.
J and I are shocked. Maybe we haven't taken this as seriously as we should have, but we felt we had been so careful that we are truly shocked to hear how dangerously we have been living.
And we are really, really disappointed with the test results. We are scared to know that each time we leave the house, every time we cook or eat, we could be putting our child at risk. We are saddened to know that this threat is something that will likely hang over Her head for always. And that, as She gets older, She will increasingly have to be left out and made to be different from Her peers. This is already surfacing.
Would we like to go berry picking at the farm with friends? Yes! We love that! Wait- strawberry picking? Oh. We will be staying home. Would Little One like to play with the other children at the playpark? Yes! She'd love that! Wait- all those kids are eating drippy ice cream cones. Oh. We will be corralling Her to one corner all by Herself. To watch Her little eyes covet the treats and search for an understanding of why She can't make friends. Or use the slide, all gooey from melting snacks.
A trip to the playground means wondering who has had oranges for snack and if they washed their hands. A family outing to a restaurant means hoping no one will think She's cute and pinch Her cheeks with their french-fry fingers, leaving swelling welts on Her face. Leaving Her parents staring at Her in a way that scares Her, monitoring Her breathing.
Before we had this appointment, I was considering joining a gym where there is an included child care with a big window so my over-protective self could peek in at Her now and then. But the kids, of course, are allowed to bring snacks. A stray goldfish cracker while the babysitter isn't looking could be devastating. We have been enjoying some playgroups centered around a meal for moms and kids. But She is so mobile now, they all are, that it's impossible to monitor whose hands have been in yogurt or cheese and then on the blocks. Which could then make Her sick. Her doctors have told us to seriously consider whether we think those things are worth the danger they pose.
How are we to balance letting Her socialize, explore, and be a part of the world with keeping Her safe? Right now we are not sure. And She's so little we can't explain it to Her. How do we explain that it is nice to hug our friends, but not when they have spilled milk on their T-shirt? What do we say when She cries because everyone at a party gets cake except Her?
But we also have to consider the consequences of enveloping Her in a bubble, especially now, when She's learning how the world is supposed to work, how to get along with others, and has so much to discover. We are exhausting ourselves constantly deliberating every tiny choice.
I'm sorry this post is so long, so rambling, and so totally un-fun. I wish I could make it funny. I wish I could encircle it all with a silver lining, and we are trying to focus on the positive things, like the improving egg allergy. But the truth is that as much as I'm ashamed to feel so sorry for ourselves, as much as I know we could have far, far worse issues to deal with and in the scheme of things are very lucky...well....we are feeling discouraged.
Little One is thriving and happy and a pure joy to us. We know that is wonderful. Her problems are tiny compared to those of some. But we are Her parents. We don't want Her to be better off than some people. We want everything, everything to be ok. We want to force it to be.
Yesterday I wrote about how wonderful it is to have Her belief in us give us the power to drive away Her imaginary monsters. But today I'm afraid we are lamenting our inability to fight off Her real threats. And dreading the day that She realizes our helplessness too. Little One's fear of a shadow, something scary that follows Her, that can't be made to let go, yesterday seemed silly. But today we feel it too.