With Halloween coming up, and all of the psycho movie trailers barricading television, this “food allergy mom” can show you a reality trailer of a scary trip! You know that moment when you become terrified and your brain has been programmed to call 911? This scenario can be a false sense of trust for food allergy families. Under ordinary circumstances seeing the rescue squad or having the P.D. show up in a scary situation would usually give a sense of relief, but for us in the food allergy world it’s another level of educating authority. We need to eyeball the scene for signs of food in their cars, ambulances, bodies–anything that can add additional danger to our kids. So when “help is on the way,” don’t get tricked into thinking your part is done, and make sure “the help” isn’t about to add to the danger.
One of my biggest nightmares is calling 911 for anaphylaxis right after the EMT’s lunch break of cheeseburgers and milkshakes. Having “the experts” come and breathe airborne milk proteins all over my daughter for the main reason we called them to begin with! We’ve learned the hard way that the little blue surgical masks are great for germs, but food proteins are much smaller and travel easily in and out of those little precautionary measures. This does NOT give me a sense of safety and security, instead, it reiterates that with a bare support system the weight of managing our children’s safety is always on us. There are no lunch breaks, or nights off from that. So, where and when do we get to feel that safety? Nowhere (for now), but I’m optimistic and I believe in change. We get to feel safety through strict avoidance of the food allergen, and the very few people we have established the trust of our daughters lives with. We can count on one hand who, in the event that we would need them on a moments notice, we could maybe turn to. So, in light of our reality, zombie apocalypses don’t seem very terrifying after all because that story of fear has an end.
Before children, my husband and I had horrible kitchen fire that I’m still scarred from literally and psychologically. As horrific as that experience was, watching the childhood home of my husbands grandfather burn ferociously in a kitchen fire, I also watched the skin on my hand melt off. Looking back on it, I remember waiting so anxiously for the ambulance and fire truck to arrive. Those 5 minutes seemed like 20! I knew when they got there everything would be O.K. I see now that my world view then had a safety net. Our world now has a specific lifestyle that we control as our closest version of a safety net. Hello Mamas
is a such a great way to narrow down your search for the awesome mom friends who live similar lifestyles!
Now, my life is all about being responsible for the 2 beautiful souls I’ve created. One with an “invisible disability,” and one without who has learned (from birth) a real sense of humanity. I can see the food allergy epidemic from both the perspective of a parent whose child is always 5 minutes away from heaven, and with a child who could be thrust into mainstream societies version of what childhood is supposed to be
. It takes having both of these perspectives to see how minimal proactive measures can make inclusivity extremely doable. Our life without milk (or milk byproducts) isn’t very hard at all–once you figure out that food has a smokescreen of marketing and advertising. And, the only thing to read on a label is the ingredients and manufacturing info. It’s empowering to know, or even have a basic idea, of what you’re eating. I have such a hard time understanding why people protest wanting that knowledge so much. Do they not want to know? Do they want to raise kids who don’t know or care? I think this tiny grasp of control we gain by the freedom of learning what we’re actually eating leads to more of a desire to care about other things people feel are relevant to their lives. It’s a start to their social and integrative moral compass.This is why we created our non-profit, Food Allergy Resources & Mentoring
to advocate, educate, and create inclusivity for kids with food allergies. It’s so much more than the 1 in 13 kids with food allergies, because this food allergy epidemic affects everyone. Mothers, fathers, sisters, brothers, teachers, nurses, the grocer, the pastor, the entire community! We’re all many moving parts of a bigger picture that I see, but can you? If you’re one who thinks this doesn’t pertain to you–I’m sorry, but your unjustifiably wrong. Compassion for others leads to the spread of compassion for others! Whether it’s food allergies or something else, compassion and inclusivity are at the crust of the solution. We’re just doing our part to affect more than our own household to have compassion. My husband and I followed our hearts to help others find their way through the familiar obstacles that food allergies can present. Our children have witnessed our drive to do this, and the seed of community compassion has already been planted in their hearts. Now can you see the bigger picture more clearly?
My daughter without the severe food allergy is thriving so much in our personally crafted lifestyle that has had so much thought and effort put into it. She’s so aware of her surroundings, what she’s eating, knows more about how the body works than the average child her age. I can see how our lifestyle benefits everyone under our roof. This is how I know that our circumstances have presented us with huge blessings. I know that if we hadn’t had to find our way with a food allergy, we’d be those people who just do as others do- never questioning the system. That was never supposed to be our family journey.
Police, fireman, EMT’s, hospitals, planes, etc., etc., are all unequipped with the needed knowledge of food allergies, making them utterly unsafe for these kids. Although these people are trained in emergencies, none understand airborne and contact anaphylactic food allergens. There’s a painfully debilitating feeling that comes when you realize that you’re educating the “help”. Shouldn’t they at some point take the lead on this?
Not all food allergies are the same. You don’t just join the “food allergy club” and feel completely understood and/or safe. There’s a dramatic and bold line that separates the understanding and safety between ingestive-only food allergens and ones that are reactive to physical touch and airborne. I wrote about this in my article for the Journal of Airborne and Waterborne Diseases
. As the parent in this situation, it’s important to acknowledge that there is a scary lack of safety in the general public for people suffering the trifecta of multiple ways for transmissions of food allergies.
So many people think my daughter has some random fluke allergy that they’ve never heard of anyone else having, but such is not the case! 1 in 13 kids have food allergies. In all honesty hers is more severe than many, but even in the past 2 years, it’s become more common for kids to develop multiple food allergies than a singular one. This shows that the epidemic is growing.
I know that my daughters story has been hundreds of peoples first experience learning that a milk allergy can be life threatening. She’s been excluded and avoided because of others’ fears and lack of desire to learn and understand. When this happens I need to see the good and realize that some people are better at a distance for now. It’s better than accepting the alternative that people don’t care about her life.
A bit over 5 years ago my daughter had a low grade fever. I called her pediatrician who wanted to call in an antibiotic- without even seeing her. As the new mom that I was- I went to the pharmacy to fill the prescription. I spoke with the pharmacist and (of course) reminded him of my daughters severe, life threatening food allergy-to make sure that they’d made sure her medicine was safe. The pharmacists came out and spoke with me stating that the amoxicillian that was prescribed contained skim milk. I was glad I asked! That God I didn’t just assume that Doctors and Pharmacists who already knew of her allergy would be doing their due diligence on their own. But, what would have happened if I hadn’t? If I had simply “trusted” the medical professionals that I still felt were a security blanket. That was the day that really opened my eyes to the fact that I’m responsible for everything-always. I hope that none of you have given all of your trust to someone because they have a certain title, although I’ve never met a “food allergy family” that doesn’t question everything anyway. It’s programmed to be in our nature I suppose. I think that eye opening moment when you find yourself teaching the Doctors changes your reliance on them, and that in itself changes the feeling of needing them as much. I’m happy to say my daughter is 6 1/2 and has NEVER been on antibiotics which I attribute wholly to our thought-out crafted lifestyle.
So, this Halloween, I hope all of you find a safe way to fun and games without the horrific realities we live with moment to moment in the world of anaphylaxis with food allergies. The #tealpumpkinproject is a great way to easily provide support for kids with food allergies. Simply paint a pumpkin teal as the indicator for food allergy families that your house has some non-edible treats for kids with food allergies. That’s it. That’s all you have to do to keep kids with food allergies included in trick or treating. My kids go on a scavenger hunt for homes with teal pumpkins. It’s a fun way to be able to participate, and it shows them when people care enough to do so. Kids with food allergies are VERY aware of who’s trying, and who simply doesn’t care.