I’ve said this to the tv screen in a fit of self pity and despair with my middle finger straight up (no, my kids were not in the room). I realize I have no right to feel pity or despair for my son simply due to a food allergy. I know that things could be so much worse and trust me, I thank God every day for our good health. This is simply an inconvenience, but since it is a life-threatening inconvenience, it does dictate a lot about our lives that I wish I didn’t.
We lived the first 2 or 3 years knowing my son was allergic to peanuts with some relatively mild reactions. Mostly, it was huge swelling eyes, where the whites would get so big they would cover the colored parts, all from touching something with peanut residue and then rubbing his face with his grubby little fingers. We avoided foods that said “may contain peanuts” but continued to use “made in a facility with…” and continued to eat out and fly on airplanes. I would notify the powers that be that our son had a severe allergy and it seemed to be enough. He was ok and we weren’t those “crazy allergy people.”
One week before the scariest day of my life (also known as my first born’s first day of kindergarten), the ACTUAL scariest day of my life occurred. After meet the teacher night, our family went with another family from my son’s new class over to a locally-owned restaurant that touts fresh vegetables they grow themselves. As always, my son ordered a grilled cheese, cut in half and a side of fruit and as always, we notified them of his peanut allergy. It was his favorite restaurant and favorite meal. Normally, after he inhales his dinner, he begs to go next door to get a cupcake. This time, though, halfway through his sandwich he turned to me with glazed eyes and said, “Mommy, I think I ate too much. My stomach hurts.” I have learned on this journey to go with what I like to call, mommy-gut. My mommy-gut (not quite the same as mommy-tummy, which I also have) churned and I instantly knew. I knew there was something wrong.
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I rushed him to a sink to rinse his hands and his mouth, which had now begun bleeding because the insides of his mouth had started to swell. I ran to the kitchen and asked how they prepared his sandwich because he was reacting and he is only anaphylactic allergen was peanuts. A manager came out and assured me they prepared it properly, but “just in case” they wanted my contact info. At this time, the mom of the family with us noticed hives on my son’s face. I questioned if I should shoot him with epinephrine (hint: yes, I should have! Upset stomach and mouth swelling is two system involement which means anaphylaxis is occurring and epinephrine is necessary) and we decided to pack up and leave to go to the closest urgent care, about .25 mile away. As they injected him with life-saving epineprine, I wondered if I would have another day with my son. I wondered if we had waited too late to give him the medicine or if the medicine itself would stop his heart. I was so happy when the symptoms began to fade, I agreed when the doctor offered my son a dye-filled Otter Pop. (As I type this, I realize this is probably the cause to his strange aversion to Otter Pops. I thought it had to do with my amazing parenting causing him to now hate dyes and sugars. Really, he just hates needles.) I had to give him steroids in order to avoid a biphasic reaction, which is a secondary reaction to the allergen that can come back without warning as soon as the epinephrine wears off, up to four days later. I hugged him to sleep each of those four nights and I wondered how on earth I could explain why there was a 5-year-old wrapped in bubble wrap living in a locked bedroom in my house.
We followed up with his regular allergist the following week and were told the same as always, “Continue to avoid peanuts.” Obviously, this is what we had been doing and would continue to do, but now it was clear we could not leave the responsibility to others. Eating out became limited by not only our preference for clean eating, but also by which restaurants did not serve or carry peanuts or peanut butter in any capacity. We had already stopped flying because of an incident involving peanuts on a supposed allergy-friendly carrier earlier in the year. Going to school was scary, but fortunately, the school we had chosen for my son was a charter with not only academic philosophies we loved, but was also free of birthday and holiday treats in order to support their nutrition policy which included no nuts on campus. If I had to let him out of his room, I felt better about letting him go to school with a an allergy aware staff, trained in how to use his Epipen, and hopefully aware parents who remembered not to send peanuts to school.
Another, more mild, reaction to hummus caused us to stop buying any products that were “made in a facility with peanuts.” We had arrived! We were now in the land of “crazy food allergy people.” We were now the people others thought went overboard because of an allergy. We were now the parents people hated because their child’s right to eat what they wanted was infringed upon. We were now supposedly the kind of people making our child think the whole world needed to revolve around him and his allergy.
In truth, we were and are none of those things. We are parents simply trying to keep our child alive because there is a common food he is surrounded by daily that can kill him. To us, a peanut butter and jelly sandwich is just, if not more dangerous than a loaded gun. The difference being that people tend to be more conscious of their loaded weapon than the are with PB & J smeared all over faces and hands. One touch, and my kid’s life is in the balance. It’s a hard concept to understand that a staple food for some is a death sentence for others. I was once unaware, too, which is why I want to share our journey with you. A journey to freeing ourselves of a peanut allergy. A journey that I hope will lead to a time where my six year old can stop contemplating his own mortality and start being a kid again.
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