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How to Survive the Zombie Apocalypse with a Special Needs Baby

Heather JacksonImmeasurable amounts of Internet memes and quizzes have confirmed that I’m far from alone in daydreaming about my personal preparedness for a full-blown zombie takeover. I mean, I wouldn’t say I’m Doomsday Preppers-level obsessed with the subject, but I do regularly have Z-Day strategy conversations with my husband (which I’m keeping under wraps because we have a legitimately solid plan of operation and I can’t have other survivors flocking to the same rendezvous points or utilizing the same resources.)

These fun and hypothetical talks have evolved over the years as we’ve moved locations from our tiny college town in Western New York, to cities in between, and our ultimate settlement in Duluth. With the birth of our oldest daughter in 2011, the well-worn subjects of head-smashing weaponry, classification of zombies, and go-bag contents expanded to include comfortable long-distance child wearing techniques and fail-proof ways to keep a kid quiet. Unfortunately, we can’t even manage that last one in this current, zombie-free reality.

Then last year I gave birth to our second daughter. Would two kids slow us down? Yes, almost certainly. But we couldn’t leave them behind because that would be totally inhumane, and if we strip ourselves of our humanity, then what is left to separate us from the zombies we might face? (Plus, we’re their parents and stuff so … responsibilities, ya know?)

But this isn’t an essay about the zombie apocalypse. It’s an essay about the steep learning curve associated with living your day-to-day life in survival mode. It’s about finding a way to combat heart-pounding anxiety from one moment to the next. Because it’s naive to think that a zombie apocalypse could be the only catastrophe to turn the world on its heels.

Our life-altering event, much like the quick spreading virus that will render the majority of the earth’s population walking dead, happened overnight. Not “seemingly overnight” but really and truly overnight. One morning we were in a routine checkup appointment with the baby and the next morning we were beginning a week-long stay in the pediatric ward preparing for surgery and subjecting our tiny, 11-pound one year old to an endless series of tests and monitoring. We spent those seven days rotating between thoughts of fear, anger, resignation, and ultimately, determination.

You see, our youngest daughter isn’t a typical baby. She has several current diagnoses and needs: she was born early and much too small, will not grow properly without medical assistance, has a hairpin trigger gag reflex, gross motor delays, and an aversion to eating by mouth. She’s also carrying around some hardware: a feeding tube that’s anchored to a hole in her stomach.

With our oldest, I get to be the kind of crunchy mom I always thought I’d be: “You have a mild rash on your tummy? Let’s rub some coconut oil on it!” But with our medically complex baby, simple things, like skin irritations, might be indicative of a larger problem or land us in the emergency room. That go-bag my husband and I joked about? We have a real one packed and ready in case we find ourselves displaced and sleeping — crumpled and exhausted — in a hospital room arm chair while our little one is regularly woken for vitals monitoring.

For the most part, we live in a state of careful balance at home. Four times a day we connect the proper tubing to our baby’s stomach to let a specially formulated blend of high calorie foods and nutrients bypass the mouth and go straight to the source. This doesn’t prevent the rest of the digestive system from getting involved though, but we no longer flinch when we deal with the aftermath of a run-in with our least favorite part of the horde: puke. It’s always lurking, but we deal with it swiftly and methodically. There are bad days, when she throws up everything we feed her, and good days, when she gains an ounce or two. But even then — on those good days — we can’t relax our vigilance; the next may see a loss and the struggle will continue.

Outings are planned far in advance and with the utmost attention to detail as we pack up gear for every conceivable scenario, our favorite brand of 60 cc syringes and boxes of split gauze spilling from the car trunk — an artillery against emergency run-ins with tube site leaks and gravity feeds gone wrong. When we’re in public, we work hard to blend in and not call attention to our differences. It took me several weeks to gather up the courage to feed my daughter in public for the first time. I chose a quiet, back corner booth at Panera Bread, fearful of stares and comments about the unnaturalness of it. In a day and age when mothers are trampled on for choosing the bottle over the breast, what would they think of me, a mother who chose to put her baby through surgery so she could feed her with a tube?

In between feedings and therapies. I spend hours on the phone making repeat calls to the insurance company, talking to nurses, tracking referrals to specialists, and reordering equipment through the medical supply company. We try to make things as carefree and uncomplicated as possible, especially for our four year old who seems to take emergency room visits and hospital stays in stride, being happily shipped off for overnights with family friends or grandparents while we navigate medical mazes with her baby sister.

The truth is, there are still so many unknowns looming. We schedule appointments with genetic counselors and endocrine specialists in different cities looking for a definitive diagnosis and trying to pinpoint that one mutated chromosome or overactive gland that started it all. We fear watching people in lab coats scratch their heads and shrug their shoulders — a non-answer — which would mean that there’s no game plan or simple resolution to our mountainous pile of questions.

While we settle into this new normal, I methodically stash away extra formula and supplies, gradually filling up an emergency shelf in case of impending disaster (which would more likely come in the form of an insurance policy change than a zombie apocalypse, but you never know). If something were to happen, it would be near impossible to successfully care for our baby without her special food.

There’s a numbness to the act of survival. You get through crisis by addressing the most important needs first — the physical and emotional well being of our girls takes precedence over every breath we draw. Our capacity to examine our own range of emotions has atrophied; there’s simply no room left for reflection by the time our heads sink into our pillows at the end of each day. While self-care may be the key to happiness and health, all survival demands of us is a continuous trajectory; we will keep moving because we have to.

Despite some of our bleakest moments, our daughter is miraculously thriving where she was previously floundering. She’s slowly gaining weight and meeting each new challenge with flush, rosy cheeks and a boldness that wasn’t present before. Her older sister is learning a new level of patience and inclusion of children who have differing needs and abilities. This isn’t the world we had planned on raising our kids in, but maybe it’s the world they — and we — need. We’re rebuilding our expectations for the future one tube feed at a time. (I think we’ll also start practicing a few zombie evacuation drills with them, too. Just in case.)

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