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.
My heart goes out to your family and everything it takes to just exist without any reactions. You certainly have a lot to figure out and my prayers go out to you. She is such a beautiful little girl who certainly will have a challenging life but I believe you guys will make it as "normal" as possible. My prayers to all and much love and hugs during the Holiday season.
ReplyDelete