Written By Guest Blogger: Lori Moussapour, MA, LMSW
(Originally posted on www.ToEmpowerU.com; republished with author permission)
Mistakes are Opportunities to Learn
We all learn from our errors. After reading somewhere that “mistakes are opportunities to learn,” I used the mantra repeatedly with my own kids, suffering for years the subsequent eye roll, hoping that I drilled patience, risk taking and resilience into them, with such overt and subliminal messaging. But could I walk that talk? Could I tolerate my own parenting errors with self-compassion? Parenting mistakes are the hardest to endure, because the work matters more than any other. And what happens when the mistakes involve exposing your child to her food allergen accidentally?
I need more than one hand to count the times I made critical errors, exposing my daughter to her allergens. Even though my errors stemmed from inadequate education, as opposed to irresponsibility, the guilt and fear I felt after each mistake was profound. Nonetheless, I started to realize that every error taught me invaluable lessons, ones that actually helped me in my efforts to keep her safe.
Hidden Ingredients and Age Appropriate Expression of an Allergic Reaction
My youngest was diagnosed as allergic to eggs somewhere around nine months. Within 6 to 8 months of that day, I served her a turkey sandwich with mayonnaise. Can you imagine my guilt and panic as she tried to place her entire fist into her mouth? This mistake taught me the importance of identifying hidden allergens, and really reading labels. It also taught me about how preverbal infants and toddlers might express distress while undergoing an allergic reaction and led me to read up on the myriad ways that kids verbalize or indicate allergic distress.
Tether your Toddler!
A few months later, while traveling in Turkey, my husband and daughter went to a cafe for breakfast. Our little one toddled around the cafe interacting with a few other customers and the waiter, who found her particularly adorable, offered her a cookie. My husband, who feared an egg exposure, raced over and only arrived in time to scoop it out of her mouth. After a horrific reaction, that we later learned was anaphylaxis, we discovered that she also was severely allergic to hazelnut (and a host of other tree nuts.) This error taught us the importance of navigating your child’s independence (and in some cases even her measured distance from you) in healthy cultural and age appropriate contexts. For us this meant that we would be by her side until she understood and could be relied upon to never take food from strangers. Because we travel so much, it also meant that when in a country whose staple flour is an allergen, whose citizenry adores babies and toddlers and whose loving fingers seek cheeks to pinch and mouths to feed, toddlers needed to be tethered!
Beauty Products Beware!
Once after a long day’s work out of state I enjoyed a one hour debrief with colleagues, having coffee and eating snacks (mixed nuts) at a picnic bench near our work site. So far from home I relished the freedom to indulge in a treat I rarely ate, as we are a tree nut free home. I made the drive home in under 3 hours, without stops, trying to get there in time for a good night’s kiss. When I got home, my daughter asked me to help apply her lotion, as her eczema was flaring up. Without thinking (or washing my hands), I lathered her up - the entirety of her legs. To my horror, hives and welts grew at an alarming rate across her tiny limbs, and we had another sleepless and stress filled evening. I learned that I had to either be allergen free myself, or practice unequivocal handwashing after eating them. Two years later, on a dry spring evening, I shared my lip balm with my daughter, a brand she had used many times over. Soon thereafter her lips turned red, and began to swell. She was reacting to residue of something I had eaten presumably the last time I used the lip balm. This error taught me about the importance of vetting and not sharing makeup, especially lip or eye products. I carry two lip balms now - one for her and one for me.
Knowing when to use epinephrine is as important as how to use it!
One mistake could have been grievous. Following an accidental exposure to pistachio, while visiting family for a holiday card/craft writing activity, my daughter experienced two symptoms of reaction- an impending sense of doom and an odd sensation of dryness and fullness in her throat. I undervalued her panic and counted only one symptom, the physical one. I reached my doctor, luckily, who told me that we had a known exposure (pulverized baklava likely resulted in cross-contact on the shared markers), and she had two symptoms. She needed epinephrine!!! I always knew how to use an epinephrine auto-injector, but this mistake taught me the importance of being skilled at first recognizing when to use it (anaphylaxis.)
Degree of blame and responsibility… are all accidents equal?
I tip my hat to those of you who ask, “are all accidents equal?” I suspect they aren’t. The skeptics amongst you ask if trusting a waiter about a dessert’s ingredients is the same error as not bothering to read a label at all or not carrying epinephrine daily. While a small segment of our community may simply not treat food allergies with the seriousness it merits, research suggests that a large portion of accidental exposure nationwide results from barriers to needed financial and educational resources. A study conducted by Dr. Julie Wang of the Jaffe Food Allergy Institute of Mount Sinai looked at parental behaviors and food allergy risks, and found that almost half of the parents surveyed reported at least one risky behavior, such as not reading food labels or not carrying epinephrine. The authors hypothesized that these behaviors were likely a results of knowledge gaps, misconceptions and financial burdens. More research needs to be done on where accidental exposures take place, under whose care, when and most importantly, why.
Your best teacher is your last mistake
But even with a clearer understanding of exemplary behaviors, based on ideal education, global access to resources and medication, and reduced financial barriers to healthcare, parents are human! We will err, indeed with the best of intentions. Parenthood is the hardest job we ever have and yet there is no description or play book to help you through it. And those of us whose kids have food allergies live every day with added vigilance. The stakes are higher and so we must understand our allergens, read labels carefully, wash our hands when needed, not share food or skin products, and readily recognize and respond to allergic reactions. One famous quote, attributed to Ralph Nader, resonates strongly with me. “Your best teacher is your last mistake.” I submit that when we err, we let enough guilt in to refocus on needed vigilance, but we offer ourselves enough compassion and care to embrace the teachers in our life, mistakes included! I know I have had my share!
As a parent, there are days that are etched in your mind forever. The days your children were born. Their first words. Their first steps. Their first days of school. But when you’re the parent of a child with food allergies, you’ve got another memory etched in your mind - the day that you received the food allergy diagnosis. In an instant, it feels as though your world has been turned upside down, and that everything you envisioned for your child’s future is no longer possible. You imagine that every “first” from that point on will be ruined now that food allergies are complicating life. No matter how positive of a person you are, that moment in time shakes you to your core.
For our family, that diagnosis day came when our youngest son was three years old. While he had a moderate anaphylactic reaction after two bites of a peanut butter and jelly sandwich just days before, I was still living in denial. I didn't feel that I could handle the reality of what my gut knew was true. That all changed with one phone call, which I received while we were on a family outing to a Thomas the Train event. I can look back at pictures from that day and still feel the exact emotions I had when the doctor said “Your son is allergic to peanuts.” In that moment, it didn’t matter that I was a licensed clinical professional counselor, trained in helping others cope with their feelings; these emotions were too raw for me to process.
With such a life-altering diagnosis, it’s hard for parents to rise above the mutiny of negative emotions. After the reality of food allergies sinks in, waves of sadness, anger, grief, and even trauma come crashing in, making it hard to see straight. As is the case with all families managing food allergies, just when I thought I had the hang of living with this unwanted guest, those waves would come crashing in with every new “first”, knocking me back each time to what felt like square one. By the time I was finally starting to feel confident in managing my son’s food allergy at preschool, it was time for him to transition to Kindergarten, where a new routine was needed. Crash! There was that next wave, which in reality translated to me crying uncontrollably the night before the first day at his new school. That pattern seemed to play out in variety of “first” scenarios: the first sports team he joined (Will the team accommodate his allergy?), the first drop-off birthday party (Will he remember to eat the cupcake I brought?), the first time he went to a friend’s house for the afternoon (Will he truly only eat approved snacks)?
However, somewhere along the way, my goal to just emotionally survive became a goal to teach my son that he could be resilient with this disease, even at such a young age. I couldn’t imagine our family being an emotional slave to this disease our whole lives. But just like the safety instructions on airplanes, I had to help myself before I could help my child. I needed to create a survival raft built from acceptance, knowledge, and resilience to help me keep my head above water before I could help my son build his. I began working towards altering my own internal food allergy narrative so I could find some way to accept what I couldn’t change. My mind had been stuck in a space filled with negativity and fear, and the battle to save myself from it was intense. The first step was to write down the fears that kept me up at night: my son being left out socially, severe limitations in life, and of course the biggest one, death, just to name a few. Next, I found sources of reputable, evidenced-based food allergy information so I could cut straight to the facts without adding more fear. And finally, craving support and finally being calm enough to accept it, I reached out to those further along this path and asked them how they handled a life with food allergies.
This new empowerment made me feel strong enough to better navigate new “firsts”. I was ready to teach my son how to change his internal food allergy narrative to a resilient one so that he could do the same. By this point, my son was nearing first grade, a time when school lunch became a factor. All of those negative, scary emotions started rushing back in, but instead of allowing them to completely knock me over, my raft was already becoming quite strong and actually helped me stay afloat. I researched 504 plans, became involved with the PTO to help shape policies, and created colorful outlines of our emergency action plan for our school epipen kits in order to make them fool-proof. Over time, our family more confidently talked about how to handle food allergy-related situations, and even practiced scenarios at home so my son felt prepared with knowledge, too. Together, we learned not to let our fears lead the way. We started to become less panicked and felt more capable of navigating life with food allergies. We had created a family raft and our narrative was on the path to resilience.
While those waves still crash in and challenge our resilience today, they seem more manageable thanks to our rafts. The reality of food allergies is that they will affect daily life in some way, and many will be persistent throughout life. Those are overwhelming thoughts that can overtake us if we let them. All of us have our own internal food allergy narratives, which guides how we cope with the impacts that food allergies have on us, and also helps determine how resilient our rafts will be. If we want our kids to learn to be resilient while living with food allergies, just as with any parenting task we are faced with, it’s up to us to pave the way towards a healthier internal narrative so that our kids learn that narrative, too.
Below are five resilience-focused tips that I use and that I suggest to parents when they need help managing the emotional aspects of food allergies. These tips can help you and your kids begin to build a food allergy narrative that is focused on acceptance, knowledge, and resilience, which in turns aids in the creation of the rafts that will keep you afloat when the waves hit.
Each family has its own food allergy journey and timeline through it, even though they all share similar emotions. Decide what the goal of your journey is so that you can create resilient food allergy narratives to achieve that goal and free yourself from that fear-based narrative. I look forward to seeing you on this path!
(Article also shared on the Food Allergy & Anaphylaxis Connection Team blog on 6/18/18 and on Scary Mommy website on 7/11/18)
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