November 19, 2017

Reaction

Good parents don't let their kids play around rat poison, right? A good pet owner, in fact, would likely have a similar, "Stay away from rat poison" policy. Most of us have been conditioned to know that poison is bad and we shouldn't touch it or eat it, and we certainly wouldn't allow little kids to do either one of those things, either.
This is kind of what leaving our home can feel like, though, for our family: navigating one hazard after another, trying to keep our littlest kid from eating something that will send her to the hospital.
Before continuing, I should mention that, yes, this column will discuss our daughter Annaka. Again. I know, it’s exhausting, but she’s very interesting and I live with her, so it only makes sense that some of my columns will focus on her life. So, if you are one of the dozens of Americans suffering from Annaka-fatigue, that’s cool. You will not hurt my feelings by reading something else. I get it. Regardless, you have been warned.
So, to reiterate, Annaka is allergic to a remarkable amount of food—all dairy and eggs, for starters, along with banana, beef and avocado. She also seems to have intolerance to wheat, soy, peas, and strawberries. We have been told that these allergies are likely caused by the anti-rejection medicine she has to take to keep her body from attacking her transplanted liver. In other words, these allergies are something we might just have to live with for most of her childhood and perhaps even beyond.
Thanksgiving and Christmas, like most holidays—like most American events in general, really—are full of these allergens, and so when it comes time to gather in groups, we have to think long and hard about what our plans are. On one hand, these holidays are one of the few times during the year when extended family meets together beneath one roof. On the other hand, she could die.
One bite of mashed potatoes, for example, mixed with sour cream, would guarantee an injection from the Epipen and a quick sprint to the nearest hospital. One brush of the hand to cookie crumbs would be enough to produce a painful welt. 
Not only this, though, but even one kiss on the cheek from someone who has recently eaten an allergen could cause a reaction. We also have to be mindful of touching things Annaka might touch, because if someone eats one of her allergens and turns a doorknob, for example, before washing their hands, that doorknob is now unsafe.
To complicate the issue, Annaka is now very mobile and eager to explore. She’s old enough to want to eat anything she sees but not old enough to understand how dangerous this is.  A few years from now, she’ll be more cognizant of what she can and cannot eat, but that will bring with it an entire different level of anxiety.
Now she is this cute little toddler, totally oblivious to how different a life style she has to endure. Soon, though, she won’t be oblivious at all; she’ll be acutely aware of her uniqueness, and not in a good way. 
So we’re tempted to just retire from social gatherings altogether, at least in the short term. Not out of spite or animosity, but just out of a rational need for self-preservation, and if she was our only kid, that decision would be easier to make.
She’s only a fraction of our family, though. How fair is it to expect our other two kids to sit out on one Christmas after another just because their little sister has to avoid most foods? And if we actually did go that route, how long would it be before they started to resent her and the exile her condition has produced?
Thus, the larger point is, when it comes to food allergies, there is no easy fix. This is frustrating, because I am from the school of just figure it out and move on. Don’t dwell on it, don’t make it a big deal; just keep calm and work hard and things will turn out fine.
This one isn’t going away, though. Annaka may never eat real ice cream. She may be that student in the classroom who has to bring her own snacks to class parties and sit at a separate table in the lunch room to minimize her potential for anaphylactic shock.
Growing up is hard enough, but to try to navigate a culture that punctuates everything—every stinking thing—with enormous amounts of calories that could literally kill you?
Yeah, sign me up for that.
Annaka, though, like her brother before her, is a climber. She wants to climb up on beds, down the stairs, out of cribs, and onto chairs. She wants to be mobile. She wants to find out. 
And so keeping her locked away could never be an option. Not really. Thus, we’ve taken a cue from the toddler in the room—again—and have made steps toward trying to figure this stupid thing out.
The biggest hurdle, and perhaps the most important, is educating people about her condition without sounding like a whiny sociopath, because the reality is, we know things could be worse. (Things were worse.) Besides that, everyone in her life wants what is best for her, but no one can really wrap their minds around the whole thing until they’ve followed her around for a few days.  Food allergies are very real but they aren’t real until it’s you or someone very close to you who is going through them.
            Another challenge is discovering a way of feeding everyone in the family a reasonably priced meal that all five of us can eat and enjoy at the same time. The test will be attempting to carve out a life that is safe for her without it also being a constant reminder of how different that life looks from the average American.


            Thankfully her life is full of good people.  She has her mom, who has become an expert on her condition, an extended network of family and friends looking out for her, and, of course, her big brother, who reminds us—constantly—to wash our hands.

Popular Posts