As a mother to a child with a life-threatening disease, I've come to accept, and even embrace, a notion that I'm calling the "good enough childhood." Living in a society where this is the opposite ambition of every parent around me, it's taken half a decade for me to acknowledge that this is not only my goal, but that it's a great thing.
In each life, there are a few moments when one's whole world comes into focus, clear and large as through a child's magnifying glass: Moments when you are fully aware of every precious thing you have, and everything you can lose. And moments like these suddenly make routine life feel blissfully like success; like thriving. One of those moments occurred in my own kitchen, when my infant daughter showed the first signs of a food allergy -- from an egg I cooked and spoon-fed her with care. "Take her to the ER if she stops breathing," the pediatrician said in reply to my urgent phone call. "From an egg?" I asked. "Yes. Or from any food," she added. "We'll get you an EpiPen and go from there." In a panic, I ran to the pharmacy, wondering if my baby's throat would close and if I could get her to the ER on time. Luckily, that time, it did not happen, but my heart felt like it might stop beating from the sheer terror of the possibility.
In moments like these, the fragility and translucence of life is frightening, and painfully clear. What's harder, still, is that this terror does not leave us as quickly as the moment passes. Slowly, over time, the awareness of how quickly a life can be taken, for any reason -- by something as mundane as an egg -- can devour the joy of life. Of a childhood, even. The tests required to diagnose the egg allergy in my daughter required skin pricks which would later prompt one of her first complete sentences at just 1 year old: "Doctor hurt back!" The test results were even more alarming: she was severely allergic not just to eggs, but to many other foods as well. In one test, a food challenge, she went into anaphylaxis right there at the hospital, as we were packing up to leave.
So where do we "go from there"? As someone who grew up off the dirt roads of North Africa, where food came from nearby fields, and food labels and allergies were unheard of, I couldn't imagine going anywhere if food posed such danger. So, instead of returning to my career and leaving my child in day care, I went no further than back to my kitchen. But despite my efforts to care for our daughter, and to feed her well, life was not simple. Birthday parties at which she could not enjoy the cake were as sad as they were fun, despite the "safe" cupcakes we brought. Invitations to holiday feasts, school celebrations and summer barbecues had us worried for days. The YMCA childcare turned her away, as did her soccer camp. When I went to register my daughter for kindergarten at our public school, I was warned, "We can't keep her safe."
Years have passed, and the allergies have multiplied. With them, the doctor visits, the worries and the challenges have, too. It is unnatural for a childhood to be robbed of its freedom by worry and disease. But only strict vigilance and avoidance of allergens can protect a child like mine, and with this comes many restrictions. And yet, while a cure remains elusive despite decades of trials, this disease has somehow also filled me with strong hope, a constant focus on living, and with endless thankfulness for the health we do have, and for the childhood my kid does enjoy, fully. For the ways in which she can, and does, thrive. Her amazing imagination, which transports us all, everywhere we cannot go, and much further, every day. Her spunk and joy, which surpasses even the richness of worldly travel, in ways I never would have thought possible. Her music. Her laughter. Her spirit and resilience.
I've been reminded, through all this, that there are infinite creative ways to approach any hurdle, and once you embrace this, everything becomes easier, and more clear. I've learned that although I can never make each situation safe, or fun, for my kid, the way a mother hopes to, I can show her that there is always a simple, safe and healthy alternative, and that I will always provide this for her. I've discovered too that the mere act of living each moment can be full of peace, hope and joy, despite fear, restrictions, and even disease, if you allow it to be. We worry about what has happened, and what might happen next. Focus more clearly, look at life through a careful magnifying glass, like a child looking at ants, and you can enjoy the true gift of each moment, minute to minute, that you do have. My vibrant, joyful child, despite her allergies and their stresses and limitations, is truly nothing if not the embodiment of this belief. Most of the time. This much is crystal clear. And this, for us, is definitely good enough.
This post originally appeared on FeedingLina.com.
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