As another death rocks the food allergy community, I’ve been thinking about my involvement in it. As you probably know, I’m no stranger to food allergies, nor to the fact that they can kill. But unlike many people, when my sons were diagnosed with food allergies I didn’t take to the internet to look for support and advice. I already knew what I was doing and felt confident in my ability to do it. I wasn’t a part of the food allergy community, even though I occasionally encountered other food allergy parents on parenting forums and the like.
As a result, most food allergy deaths didn’t reach me. I’ve been hard-pressed to read the news since having kids anyway, and food allergy deaths are seldom in the top headlines. I knew that people died from allergies, but I was seldom forced to think about them.
That’s all changed now. In the two months that I’ve been active in the food allergy community, I’ve heard about a teenager who died after eating trail mix while watching a movie with his mom (an older story, I’ve learned, but brought back into the news in conjunction with a scientific study), a young boy who died after an unidentified exposure on Halloween, and now a college student who wasn’t able to get himself to the hospital fast enough after exposure at a party. Not to mention I’ve been part of a social media firestorm against a school board official who jokingly suggested shooting kids with allergies.
That’s a lot. I knew in my head that food allergy deaths were common enough, but reading about the stories of these remarkable young people, often hearing the words or seeing the faces of their grieving parents, makes the whole experience far more visceral. I come face-to-face with their horrible losses, and am forced to think about them through the lens of my kids. I imagine myself in the same situation, immediately regretting one “little” mistake or railing against fate that there was no mistake, frantically trying to keep them with me, worrying that everything I can do won’t be enough. Or I imagine myself having the reaction, feeling myself slip further down the hole than I’ve ever been, protesting that it can’t possibly be that bad and what the h#!! went wrong?
It’s enough to make me want to quit this venture and climb back into my shell, content with the knowledge that our lack of reactions means we’re doing everything right and confident that we will continue to do so. Instead of thinking about these very real horror stories a couple times per month (or more, as my thoughts stray down these paths for several days after each story,) I could go back to thinking about them only a couple times per year.
But I can’t.
These deaths have been happening since before I was paying attention, and they will continue even if I stick my head back in the sand. So many of these deaths are preventable, and the more voices we have for advocacy and education, the more reactions we can prevent and properly treat, and the more lives we can save.
That’s part of why my husband and I are starting Allergy Superheroes. We don’t just want to protect, educate, and empower our boys, we want to spread that to all kids with food allergies. We want all kids to develop the confidence and knowledge to advocate for themselves and grow up to lead healthy, full lives. If I quit now, I won’t be part of that.
I will grieve with each family that suffers a food-allergy-related loss, and will continue to raise my voice when awareness or advocacy is needed. I want to protect and empower children. I’ll do my best.
ETA: I just learned of another today, a teenager died on Thanksgiving Day, weeks after eating a peanut butter cookie. I’m saddened, and my thoughts go out to the family, as they do with all of these deaths.