“Mommy. Mommy,” a sweet, innocent sounding voice called from his room. Austin’s early morning shout let me know he was awake, and ready to start the day.” I braced myself, and took a deep breath knowing it was the last respite until bedtime—a long twelve hours later.
The anticipation of a new day gave me a feeling of unease. The stress involved in parenting a child with severe food allergies is intense.
“Alright, let’s go down to eat breakfast, guys,” I said after getting dressed and teeth were brushed. My sons sat in their designated seats, and waited for me to pour cereal in their bowls I had just unloaded from the dishwasher. “Is this one safe for me, Mommy?” Austin asks each and every morning, even though he knows we only keep “safe” cereal in the house. My stomach churned. Is he scared he may get sick? Does he trust me? Is it on his mind as much as it is on mine?
Meal number one—success. No hives, vomiting, discomfort, or medicine needed—a major feat in our household. As we got ready to head out the door, I double and triple checked my bag to make sure I had his epipen and Benadryl in hand. We dropped Austin off at Sunday school, and entrusted our child with someone else who must be as vigilant as we are when it comes to his allergies. I made eye contact with his teachers, and without actually speaking, I communicated that I was leaving, and to please take care of him.
Immediately following Sunday school, we went straight to a birthday party. Birthday parties, which should be the most carefree, fun, and happy times, creates, by far, the most anxiety for me (and him, I imagine.) Carrying in tote Austin’s “safe” lunch, along with a special dessert for him, I placed his bag at the way end of the table to keep him as far away from allergens as possible.
It happened to have been a gymnastics party, and it was so gratifying to see him jump, run, and bounce just like every other child. He is like every other child—he just cannot eat what others eat. When it was time for lunch, the kids formed a line to receive a squirt of hand sanitizer, indicating to me the high stress process began. Since we know hand sanitizers are not effective in removing allergens, Austin headed directly to the bathroom to scrub his hands clean with soap and water. He then sat down at the table. I watched as he scanned each place setting, assessing what every other kid in the room was eating—that he could not. I hovered over him as if I must protect him from deadly allergens surrounding us. And, yes, deadly. He had anaphylaxis four weeks ago from a small ingestion of wheat. With slices of pizza scattered, and kids hands being contaminated, my heart beat faster than one can imagine, and I prayed it ended quickly, and we could get out safe and alive.
Parenting is hard. Let me restate that. Parenting is fucking hard. Raising children consists of multiple responsibilities aside from just simply keeping them alive (which isn’t so simple.) The task of supporting a child’s physical, emotional, social, and intellectual development, in and of itself, can feel overwhelming. Now add special needs or a disability.
My child has severe food allergies. And, under the ADA, he is considered to have a disability. Life activities, such as eating and breathing, are at risk for a person with a life-threatening food allergy. In addition, with food allergies (and asthma) comes a lot of medicine, many doctor appointments, emergency hospital runs, extensive prep work, and endless attention.
Later that day, my husband took Austin for an activity — in which he considered fun and exciting. They took our dog to the pet store to give him a bath, and he loves to help. Austin grabbed the container of shampoo, poured it on excessively, and starting scrubbing it in all over the dogs body. Within minutes, Austin started scratching the hell out of his skin, and my husband noticed he had developed hives on his hands and up his arms. There was something in the soap that he was allergic to, and the fun activity quickly turned into yet another scary exposure. A dose of Benadryl, while monitoring his breathing closely, and watching for other symptoms has become what seems like routine.
I try to describe these feelings of angst, panic, and exhaustion as this—when I️ had a newborn, many times I️ would wake myself up in the middle of the night, and feel the need to just check on the baby to reassure myself he was safe and breathing. I have these worries and fears with my food allergy child 24 hours a day. I am constantly checking his body: arms, legs, back, butt, hands to make sure his skin is clear. I go in his room every night, a couple of times even, to watch him sleep peacefully (and make sure he is breathing).
I realize that as he gets older, he will be able to absorb some of these responsibilities, and verbalize when he feels sick. But, at age four, it lies on us as parents. Therefore, I must be obsessive about checking labels and ingredients on every single thing he consumes, wash his hands compulsively, and continue to reinforce the importance of staying “safe.” Accidents have happened, and I’m sure will happen again. But, as an anxious person to begin with, I am doing everything I can to model composure, positivity, appreciation, and hope. This, however, has not been easy for me.
I suppose after watching my child struggle to breathe on two occasions now, both needing an epipen to save his life, one could say I am traumatized and terrified.
Life could always be worse. I tell myself that everyday. But, this life is f’ing hard, and I am entitled to feel overwhelmed and stressed.
As Theodore Roosevelt said, “Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty… I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well.”
Austin is the most amazing human being I know. His resilience, energy, and zest for life keeps me upbeat and positive. The love, hugs, and kisses he shares with me everyday makes this journey more than worthwhile. Truthfully, I wouldn’t want to know what life is like without food allergies. He has challenged me on issues I never even knew existed. And, for that I am forever grateful to him, and will continue working tirelessly to keep him safe, healthy, and happy.