Yesterday was both Mother’s Day, and the start of National Food Allergy Awareness Week. It is in the spirit of both of these events that I felt compelled to compile this list. Being a mother can be difficult as well as rewarding, and being a food allergy mom comes with its own unique challenges. I am often told by friends and family that they can’t imagine managing allergies the way that we do. Truthfully, it’s not something I could fathom either, until all of the sudden it was our reality.
There were a lot of things going through my head when I decided to write this. I hope that in writing this I can maybe give a little insight into our lives to those that would like to better understand our experience, and what life is like for us from day to day. I am also hopeful that other allergy parents will read this and perhaps find something that echoes there own experience. I do believe that the old axiom “there’s strength in numbers” rings true. This road is often a difficult one, but sometimes just knowing you aren’t walking it alone can be very comforting.
One last thought. Its goes without saying that I am only one person, and as such, I cannot personally speak for the entirety of the allergy community, and I have no intention of doing so. The following list is a conglomeration of my own thoughts, feelings, and experiences, and while I can’t attest for every individual’s thoughts or experiences, I do believe these are feelings and experiences often shared by allergy moms and dads.
I hope you guys come away with something after reading this, whether it is a better understanding of life managing allergies, or solace in the fact that someone else is going through the same thing you may be. I always ask for feedback on my posts, but I would be particularly interested in hearing what you guys have to say about this one. If after reading this post, you find that you have something to add, please don’t hesitate to share it in the comment section below. I would especially love to hear from other allergy moms and dads on this subject. What are the things that YOU wish people knew about life with allergies, and/or manging food allergies?
Ok, here goes. In no particular order, here are 10 things that I wish people knew about life as food allergy parent:
- Allergies can make everyday situations terrifying: Can you imagine walking into a restaurant or grocery store and knowing that your child could be in danger just by walking through the door? Can you fathom visiting family and friends and never being able to let your guard down because you know that just a crumb, a spill, or the tiniest trace of food on a surface could put your child in the hospital (or worse)? When it comes to managing severe food allergies, we obviously have to prevent our child from potentially ingesting “unsafe” food, but more often than not that alone is not enough. We must also prevent our kids from touching anything that may be contaminated with microscopic, invisible to the naked eye amounts of our allergens. Even just being in close proximity to an allergen can be potentially dangerous. The first time we ever had to use an epipen on my son, he had just walked into a room where food was cooking that contained one of his allergens and immediately went into anaphalactic shock. Airborne and contact anaphalxis are both very real, and very scary. We always take precautions when we leave our house to prevent potential reactions; we carry our epipens and allergy meds, we wipe down anything our child could possibly come in contact with (shopping carts, seats, tables, etc), and we avoid potentially risky situations. Despite taking precautions, things can (and do) still happen, and our kids can still end up with a reaction. Despite being ever vigilant and doing everything I can to keep my child safe, I have still had to epi after visiting relatives, at birthday parties, and at the grocery store. The fact is, when you are fighting a singular protein, grocery stores, homes, restaurants, parks, anywhere that could possibly come in contact with food, could be harboring danger.
- It will break your heart over and over again: It’s hard to say for sure the first time I felt allergy life clenching my heart, but I can tell you about the time when I felt it the most. My son was about four years old and we had just used his epipen for the first time. We were on our way to the hosipital and I was absolutely terrified. My son, who had previously been crying hard and loud, had quieted down. He was suprisingly calm when he quietly spoke to me. “Mommy,” he said. “I want you to know, that even if I die, I will always love you.” I was trying my hardest to be calm and strong for my little guy, but those words ripped right through my heart, and in that moment I wanted nothing more than to fall to pieces. I don’t know that we had ever explicitly told my son that he could die from an allergic reaction, but in that moment, he thought he was going to die. Not only that, he thought he might die, and was worried about me. How many four year olds even understand the concept of the death? Yet here was my child, barely more than a toddler, facing his own mortality. I will never forget the way I felt in that moment. I wish I could say the heartbreak ended there, but it didn’t. I’ve felt it time and time again. Sometimes it’s over little things; my child wistfully looking at a food he wishes he could have, but knows he can’t, or losing a food that was once safe, but for one reason or another it no longer is. Sometimes, it’s having to turn down an invitation to an event that I know my child would love to attend, but can’t becasue the risk of coming in contact with his allergens is too great. Most recently, it was my social butterfly of a child telling me that he doesn”t ever want to go to another birthday party, because he’s too afraid he will have a reaction after having had reactions at the past few parties we have attended. Despite all of this, my child is so happy, energetic, and loving. I am so proud of how brave and resilient he is, but it still saddens me knowing the weight that he has to carry on his shoulders.
- It can feel very isolating at times: I never realized just how much our society revolves around food prior to the diagnosis of my son’s food allergies and the onset of mine as an adult. It is hard to attend any sort of social event when you have multiple severe food allergies. We have to be very selective about where we go, and what we attend, and have had to leave events early on more than one occasion. If we do go somewhere, it takes a lot of planning. There are even times when we show up somewhere and have to leave immediately, such as when we went to a local playground recently, and left before my kids even got a chance to play (there were mutipe children eating and playing on the slides and drinking beverages I knew contained my son’s deadliest allergens). It’s hard for me, as an adult, to form friendships when almost every mom group, playdate, and social event involves food. We have even had to forgo visits with very close family and friends because my child cannot play in their homes without having a reaction. Even when we do find opportunities to socialize, I can never fully let my guard down, and am always on the lookout for potential allergens; always watching my child for signs of a reaction. Sometimes this comes across as me being “overprotective” or a “helicoptor mom,” and only further exacerbates the issue of having a difficult time connecting with other parents, who more often than not (and through no fault of their own) do not understand what life is like for us.
- We are not “overprotective”: As I mentioned above, allergy parents are often mistaken as merely being overprotective. We are protective and always vigilant because we have to be. When you see us checking every inch of a playground for food, or inspecting our children head to toe everytime they itch, or cough, or sneeze, it’s not because we are being needlessly overprotective–its because preventing and promptly treating an allergic reaction can literally mean the difference between life and death for our children. Similarly, us allergy parents aren’t wiping things down because we are “germaphobes.” We do it because, again, it could mean the difference between life and death for our children. Also, please don’t ever tell an allergy parent that if they just let their kids “play in the dirt” or “go outside more” their kid wouldn’t have allergies. Please don’t tell us that our kids have allergies because we “over sanitize” or “keep our kids in a bubble.” This line of thinking is not only blatantly incorrect (many of our children’s allergies have been implicated since birth, and consequently were not possibly a result of any percieved lack of exposure to germs), it is also potentially very dangerous.
- Anxiety is inevitable: When you always have to worry about allergens lurking behind every corner, its hard not to become anxious whenever you leave home. When you have watched your child become deathly ill from a food, its hard not to be anxious when ever you see that food anywhere near them. When our kids get sick, we often wonder if they are just sick, or if we might be witnessing the early signs of an allergic reaction. That can make us anxious. Then, there is always the knowledge that even if we do everything “right,” it may not be enough. Did you know that allergen disclaimers such as “may contain” or “made in a facility with” are strictly voluntary? Similarly, the disclosure of this information is also voluntary. This means, that as parents (or individuals with allergies) we can read every label, even call manufacturers, and still end up giving our child a food that contains undeclared allergens. We have experienced firsthand reactions from undeclared allergens, and the knowledge that this could so easily happen again is one that gives me a great deal of anxiety on a regular basis.
- We are pros at reading labels: Believe it or not, label reading is not always as straightforward as you may think. While the FDA requires that any ingredients containing one of the Top 8 allergens be clearly listed on a product’s label, people still need to be familiar with every possible name of their particular allergens. For example, milk can go by literally dozens of names, including somewhat obscure, and seemingly inocuous terms such as lactoglobulin, and sodium caseinate. Not only that, there are a lot of loopholes in the laws mandating allergen labeling and disclosure, such as those that allow products to be labeled as non-dairy, even if in actuality it contains dairy derivatives (such as casein, one of the most common proteins to trigger an allergic reaction in milk allergic individuals).
- Managing Food Allergies can be Very Expensive: This is particularly true if you are managing more than one allergy. While there are more and more allergy friendly foods available on the market all the time, these foods often come with a hefty pricetag when compared to their conventional counterparts. Since these products usually have slower turnover rates and are more expensive to manufacture, they are also more difficult to find sales and coupons for. People that live in rural areas may find that they have to drive significantly longer distances to find allergen free foods, which results in higher gas expenses, and more vehicle wear. Similarly, parents of children with allergies (especially children with underlying allergic disorders) often need to commute not insignificant distances to visit specialists, tacking on even more expense. Then there is the cost of these visits, which can be a very significant sum, especially if it is necessary to travel out of network for treatment, or if there is a lapse in insurance coverage. Add to this the cost of epipens (which are not cheap) and allergy meds (such as antihistamines), and the medical expenses can get out of hand very quickly. For a lot of families, though, the expenses don’t end there. We are an EoE family (my son and I both have an allergic disorder called Eosinophilic Esophagitis), which requires frequent endoscopies (a procedure that without insurance, can easily cost $20,000 per scope), regular bone scans, and extremely restricted (sometimes completely elemental) diets. Many people with EoE require special elemental formulas (often via a feeding tube) that can be very pricey. For reference, our insurance currently covers the cost of my child’s formula, but without that coverage, it would cost us about $2000 a month. When most people think formula, they think infant formula, but diet supplementation with hypoallergenic formulas is often necessary well beyond infancy. It can also be difficult to get insurance coverage of these formulas, so many parents end up paying for them entirely out of pocket.
- We are Creative and Resourceful: In the time that we have been managing allergies, I have learned to bake and cook with ingredients that I didn’t even know existed prior to our allergy diagnoses. With that creativity, I have learned to make delicious allergy friendly meals that our entire family enjoys. I know that I am not alone in this. Us allergy parents end up fostering our creative side out of neccessity as much as anything else.
- Allergies impact virtually every aspect of our lives: Allergies influence not just what we eat, but also what we do (and do not do), who we spend time with (and who we don’t), how we think, what kind of toiletries/body care items we use, medications we take, vaccinations we get (or do not get–many vaccinations contain common allergens), where we go on vacation, how we schedule our day (since eating out often isnt an option we often plan around meals or pack food), where we shop, where we live (proximity to hospitals, drs, life squads, etc. are often variables we must consider when settling down somewhere), where we work, and where or how we educate our children (many allergy parents choose to homeschool, or choose schools based on how well they manage pupils with allergies). This list is not all inclusive, because I could not possibly list every way our lives are affected by our allergies.
- Amidst all of the stress and heartbreak, we sometimes catch a glimpse of something beautiful: Perhaps it is the optimist in me, but I feel that this post would not be complete if I didn’t at least mention this. Being a food allergy mom has brought out aspects of myself I never knew were even there. In response to our allergies and how we have to manage them, I have found in myself more strength, resilience, capability, creativity, and resourcefullnes than I could have ever imagined I contained. I have been brave, I have persevered, I have been nurturing, and I have been comforting. Most importantly, I have kept my child safe, even when doing so wasn’t necessarily easy. I have always done what I needed to competently, compassionately, and without hesitation (whether that has meant making a hard decision, stepping outside my comfort zone, or administering life saving epinephrine). Further, I have seen these same traits exhibited in my allergic child, and for that I can’t be more proud of him. He has faced a lot more adversity than most children his age, but despite that he is still bright, funny, loving, brave, and optimistic. I have also had friends, family, doctors, and even strangers support us in remarkable ways. To all of the food allergy mama bears (and papa bears, and grandma bears, and grandpa bears) that may be reading this, I hope you can find these beautiful moments as well. Take a moment to contemplate the people in your life, placing emphasis on those that have supported you and your child. Maybe there’s a teacher that went above and beyond to include your child and keep them safe, or maybe theres relative that learned how to bake gluten free just for you. Maybe you had a chef that went above and beyond to make your child something safe and delicous to eat. Whatever your beautiful moments are, remember them, and treasure them. Most importantly know that you are capable, strong, resourceful, and everything your child needs.