Lately, I’ve found myself nostalgic…nostalgic for a simpler time in the food allergy world. For thirty-three years I’ve been a “warrior mom”, committed to keeping my children out of harm’s way, balancing experiences with safety. And while the task has always required a vigilant process, I am so very grateful that my active parenting took place during a significantly simpler time. It w as a time free of social media, cell phones, and helicopter parenting. There were limited resources from which to share experiences or gather information. There were no formal individual allergy plans, no 504’s, and no allergy month or special allergy recognition. Rescue vehicles did not carry epinephrine auto-injectors. There were no detailed ingredient requirements, no restaurant training, and my oldest didn’t meet another child with AFA’s until she was sixteen and traveling overseas for six weeks with a youth program.
The added burden on parents of AFA children today, truly saddens me. On the one hand, I am so thrilled to embrace the human resources in the form of organizations dedicated to research, advocacy, and education; allergy magazines; blogs; and protective laws. In this complicated world, they are life-saving and completely necessary. Not a day passes that I don’t learn something new; reach out with a thumbs up for a success story, comment on a post within the community, or write a letter. The difference for me is that I have the time now. My children are on their own; active care-taking of my parents and in-laws is no longer part of each day. I work in education (grades 4-6), and that is where most of my energy goes. Therefore, my involvement in the allergy community is a passion, not the 24/7/52 necessity that it is for families today.
My oldest daughter had her first anaphylactic reaction when she was just under a year. It was terrifying! Two days later we were at her pediatrician’s office. We left with an Epi-pen Jr., and general guidelines. Within the week, we were at BCH being seen by an allergist. The months following were definitely an adjustment period. As food was introduced very slowly, we kept food diaries and had initial allergy testing. The AFA’s were accompanied by severe eczema and frequent GI issues.
At such an early age, we had relatively simple control over educating our most immediate extended family and relying on them as partners. My parents and sister were the chief babysitters. We had them come to our home when babysitting, knowing that everything there was safe, thereby cutting risks. We had a fairly simple AFA existence.
As our daughter grew, and was joined by another sister also with food allergies, life required more accommodations. Teachers, friends, and playmates needed to be educated. Our daughters worlds grew broader with each passing year. Even so, it was a simpler time. We truly went with “our gut” actions and decisions.
We flew with our children all over the world. It made sense to book first flights of the day. Families with young children always boarded first, giving us the chance to wipe down seats and tray tables. We never accepted any food or drinks, always packing our own. If nuts were served, we kindly asked a seat mate to refrain. No one every refused. When possible, we stayed in efficiency apartments to be able to prepare safe food. We carried language translations for allergies…a precursor to the chef cards which are so fabulous. We did eat out, very carefully, and always trusting our instincts. If it didn’t meet our criteria, we would simply move on.
We had our biggest emotional trauma when my oldest was turned down from a month long sleep away camp that she and her best friend desperately wanted to attend. We look back on that and recognize that it provided our future mantra…”If someone/someplace is not welcoming…an AFA child doesn’t want to be there.” There can ALWAYS be back-up plans! There are always doors that will open! And resilience is a trait necessary for all parents and children.
Our girls are well into adulthood. AFA’s (and asthma), will always be a family affair. It is never an option to let one’s guard down. But, I do feel such gratitude for the simpler days. Days that were less litigious; days that were more open to dialogue resulting in “cans” rather than “can-nots”; those days of, “it takes a village to raise a child,” where we were all part of the village!
-Written by my mom