Two years ago, we moved Jaxon into his college dorm. I could have never predicted the lessons that I myself would learn and it wasn’t what you might expect.
Jaxon has severe food allergies to milk, tree nuts and fish. He started out life with 11 food allergies. After a life-threatening reaction as a baby, we began our journey as food allergy parents. My husband and I sought out a food allergy pediatric doctor at Arkansas Children’s Hospital. We educated ourselves and then made opportunities to educate others. We worked hard behind the scenes making activities like sports, parties and band as safe as possible so he wouldn’t miss out. I had a mission and I can honestly say that it consumed me.
The prevalence of food allergies wasn’t quite what it is today. I didn’t have the internet at my fingertips and I certainly didn’t have Facebook support groups. I did have determination. I didn’t want to accept the hardships that I knew my son would have to face every day. I wanted what all parents want for their kids--normalcy, inclusion and happiness.
So we made 8-hour round trips to Arkansas Children’s Hospital where Jaxon had blood and skin tests, food challenges and was one of the first participants in an FDA Phase 1 study in peanut Oral Immunotherapy. This study took Jaxon six years to complete and resulted in marking his peanut allergy off his list. The study was new, scary and involved trips to the hospital every two weeks. It would require daily consumption of tiny amounts of peanut powder in hopes that he would build up a tolerance. The only reason Jaxon agreed to participate was the hope that food allergy kids coming up behind him would benefit, and they certainly have as OIT is now a treatment option.
So after 18 years of learning from experts, there was one expert that I had yet to learn from. It was my son. When Jaxon was asked to write his story for 7 Billion Ones two years ago, he at first refused. I was baffled. How could he not want to take this opportunity and use this platform to teach others? He told me that he had nothing to say that would be worth reading. After pleading with him to write his story anyway, he eventually agreed to try.
I’m embarrassed to say that it never occurred to me that this would be a painful process for him. Throughout his childhood, he didn’t let food allergies hold him back. He played sports. He was in band. He went to parties. As parents, we did our due diligence. We supplied safe foods when possible, trained others on epi-pen usage, educated his friends, teachers, and other adults. As far as we were concerned, he was living as normal life as possible.
When I read Jaxon’s story two years ago, I cried. I cried for the isolation he felt despite my best efforts. I thought I had succeeded in helping create a life where his food allergies didn’t hold him back. But I learned he felt loneliness at times. Even though he would attend school pizza parties and act like it was no big deal by not eating or by bringing safe food, he still felt left out. He felt different because he was different and admitting this made these hurtful feelings very real. But what emerged from telling his story was his liberation. When Jaxon put his feelings on paper, he was arming himself with the tools he needed for the next chapter in his life.
Jaxon’s story was released just prior to starting college. Needless to say, we never imagined the reach it would have. As it turns out, Jaxon did have something worth reading. Jaxon’s positivity is contagious, but the part that resonated with most people was how he addressed the social isolation element of food allergies. As we received more feedback from the story than we could keep up with, we learned that his words were empowering other food allergic kids. And in turn, this empowered Jaxon.
That fall, Jaxon was asked to speak at a Food Allergy Research & Education (FARE) Teen Summit. He spoke in an “adult-free” room where he and his peers discussed how they deal with feelings of isolation in school, around friends, and in dating situations. They left the room feeling validated and strengthened knowing they weren’t alone. They learned it’s normal for their allergies to make them feel different in some situations, and that these allergies don’t define them. After the summit, Jaxon and his peers left with more confidence and determination to face their daily challenges.
When I drove away from Jaxon on his first day at college, I left with a new understanding. We had met with the food service company at his college three times during that summer. We informed the campus clinic about his severe food allergies and history of anaphylaxis. We talked with his roommate, who coincidentally happened to be an Eagle Scout with epinephrine training. And then I officially passed the baton to Jaxon and have watched him flourish over the past two years.
There have been a few a hiccups along the way, including two ER visits, but he has navigated through social events, fraternity retreats, and an Astro-physics conference. He no longer lives with the “food allergy kid” label and controls who and when he tells someone about his life-threatening condition. He has learned when and who to trust in preparing his food. Most importantly, he is finally living a “normal life” on his own terms.
As it turns out, Jaxon is the real expert on food allergies. Even though I’ve been with him every day on this journey, I have never walked a day in his shoes. Even though I have armed myself with research and medical facts, I have never known the feeling of sitting at IHOP drinking a glass of water while all my friends are eating breakfast and the staff decides last minute that they can’t provide me a safe meal. Even though I’d like to secretly follow him around each day with a basket of safe food, I have to let go.