“You don’t need to manage my food for me all the time anymore,” said my 13-year-old son.
We were on the way home from a ski weekend with three other families. Due to the small mountain village, all the teenagers were able to enjoy an abundance of freedom over the weekend. They managed their schedules, meals and skiing as a group, with minimal parental intervention. My boys absolutely relished their independence. They thanked me for “backing off” all weekend.
Both of my boys have managed food allergies their entire lives, so this weekend was a pivotal moment for our family. Thanks to treatment, my older son no longer has food restrictions and was able to eat safely at restaurants. My younger son, who still needed to eat the food I’d prepared in advance and brought for him, was fully capable of managing his meals without my guidance.
When they were babies, both of my sons were diagnosed with multiple, potentially life-threatening food allergies. While any single food allergy impacts daily life, my boys were on the extreme end of the scale. My older son had a mild allergic reaction to his first bite of peanut butter. Although bloodwork showed he was also allergic to all tree nuts, the impact of severity had not yet set in.
That all changed a few months later when my younger son nearly died from his first bite of banana. I will never forget the horror of watching my 6-month-old baby turn purple and go lifeless from a single bite of food. I immediately knew we were in urgent danger and took him to medical care quickly. After two rounds of epinephrine and other rescue medications, doctors saved his life.
However, mine would never be the same.
Courtesy of Hillary Tolle Carter
My younger son was diagnosed with more than two dozen food allergies. After years of additional testing, that list has shrunk to eight allergens. Despite constant vigilance, he had another close call when trace amounts of gluten were found in certified gluten-free chicken nuggets that he ate, causing a reaction so severe that he required four doses of epinephrine to save his life.
There is absolutely nothing worse than watching an entire emergency room staff rush to your son’s room once he arrives via ambulance, igniting the dread of your worst nightmare coming true.
Food shouldn’t cause this level of fear in a parent. But when you’ve seen it almost take your child’s life, there is no way to ignore it or even minimize it. Most parents worry about their kids getting hurt on the playground. I felt like mine were playing in the middle of a highway.
For better or for worse, this disease has in many ways defined my entire parenting journey. I transformed into a food expert, cooking from scratch and reading every food label. I became a strong presence in our school as class parent and trip chaperone. I met endlessly with doctors, teachers, kitchen staff and school nurses. I developed into a respected voice of the patient, leading a local support group and working with a national nonprofit.
I leaned hard into advocacy to help my boys by creating a world around them that was more educated and empathetic. But also, I needed to feel a sense of control in what was an otherwise uncontrollable situation. Every meeting, blog post, speech and media interview I did was always, ultimately, a pep talk to myself. My work was my life raft. The food allergy community was my support group.
Then something unexpected happened: the emergency phase … ended.
Courtesy of Hillary Tolle Carter
Treatment changed our lives. The reactions slowed. The fear softened. And a moment of clarity emerged: I realized I had spent more than a decade being more than a parent. I had been a full-time crisis manager.
But if I wasn’t constantly managing food allergies … who was I?
When your child has a chronic health condition, caregiving becomes more than something you do — it becomes who you are.
Let me be clear upfront — this does not make me a “helicopter parent.” I did not cause or choose this diagnosis, and I would be grateful to not have anything “extra” to manage. But when you are responsible for not only being a parent, but also being your child’s full-time medical support, there is no way it doesn’t seep into every fiber of your being.
My children’s kryptonite was something they also needed to survive. Every meal, every snack, every treat, every holiday. Daily life meant label reading and meal prepping. Every school event, trip and celebration required thinking ahead. My work was not only the physical acts of ensuring safe and healthy food was always available for my boys, but also the psychological work of teaching them caution without creating anxiety.
Their diagnosis brought shock and denial. Endless doctor appointments led to exhaustion. Emergency room visits left behind trauma. And when you are a parent, you do your best to absorb it all so that your child doesn’t have to. Everything piles up, and nothing leaves you.
For my family, intervention with treatment was a slow and gradual shift. Oral immunotherapy requires years of daily dosing to build a tolerance. It is a different kind of vigilance and takes an enormous mental capacity to manage. But, for my older son, it worked. And for my younger son, a medication called Xolair provides him the safety to participate in “normal” activities like eating at restaurants, spending the night with friends and traveling without worrying about a severe reaction from an accidental small ingestion of his allergen. Two different paths that led to the same outcome: completely transformed lives.
My boys are thriving. And they have earned every second of their newfound freedom. Over the years, they’ve also learned the skills needed to manage their food allergy responsibilities on their own. They ask questions at restaurants, they read labels, they know how to cook basic meals and they always carry epinephrine.
Courtesy of Hillary Tolle Carter
They are also right on schedule. As teenagers, they are creating boundaries and establishing autonomy. It is age-appropriate for them to need less daily management from me. I am thrilled beyond measure that their treatment allows them to live the kind of normal, independent lives they deserve.
And at the same time, this transition feels disorienting. Food allergy treatment is life-changing, but it is not a cure. The fear is lower but not completely gone. The adrenaline has faded, but the fatigue remains. I feel like the merry-go-round has stopped, but I’ve been too dizzy to get off the ride.
For most of my boys’ lives, I’ve had to live in a constant state of readiness. Now that the urgency has lifted, I’m navigating what to do in the space it left behind. I’m realizing my next chapter isn’t about letting go of caregiving. It is about expanding beyond it.
My story is about food allergies. But I believe it’s a universal thread in parenting. Chronic health issue or not, all children grow up. If we are doing our jobs correctly, they need us less and less. We want that autonomy and freedom for them. We want that autonomy and freedom for ourselves.
Despite growing up with a medical threat, neither of my boys feel defined by their food allergies. They’ve lived childhoods filled with school, sports, friends and delicious food. Their struggles have created social awareness and flexible resilience at tender young ages. I am so proud of them.
As a family, we did not let food allergies get in our way. We have gone on travel adventures, celebrated beautiful holidays and purposefully pursued joy. But while our family looked “normal” from the outside, I always felt like a duck that was peaceful above water but furiously paddling just under the surface to move forward. My boys’ food allergies didn’t define me, but they did define a lot of my physical time and mental space. For so long, my energy went outward — to doctors, labels, schools, safety plans.
But when my son so innocently said that he didn’t need me to manage his food anymore, my brain suddenly snapped to attention. Of course my boys don’t need me to monitor every bite anymore — they’re teenagers. We have spent their entire lives educating them and preparing them to not only be independent, as all parents do, but also to pay extra attention to their own health needs. I had done my job teaching them to advocate for themselves. And now I needed to advocate for myself.
I’m realizing I have more time in my day and more space in my head. I’m choosing to care for myself through this transition just as I would care for a dear friend in need. While I have always modeled exercise and a healthy lifestyle for my boys, I’m returning to my first true love, dancing. When I go to a studio and dance in a dark room with loud music, I get out of my head and into my body. I’m saying yes to more date nights with my husband and quality time with my friends. I’m taking an online nutrition course that I find fascinating. I’m taking long walks with my beloved dogs. Honoring my soul feels good.
Courtesy of Hillary Tolle Carter
Professionally, I’ve gained an impactful list of skills during this chapter of my life. Caregiving required me to become fluent in resilience, medical literacy, communication, advocacy, empathy, high-stakes decision-making and crisis navigation. Over the past 13 years, I’ve utilized my experience to empower other families facing challenges like mine via nonprofit, media and fundraising efforts. I absolutely love my work, and I am truly proud of it. But I’m now recognizing, with more time and a deeper perspective, I can spread my wings.
The lessons learned and skills earned can help me empower a broader audience. All parents will feel this shift in one form or another. Life is always evolving after all, and roles change as children grow and launch out of the nest. I feel passionate about focusing on caregiver advocacy — for parents managing food allergies or other chronic medical needs, but also for those navigating major life transitions.
Not only did food allergies alter my children’s lives, but they also transformed mine. Although I still carry some of the trauma, the experience has made me stronger. I am giving myself grace to relinquish control — not only over every bite that my boys eat, but also over what my next chapter looks like. After years of being a crisis manager, I’m allowing myself time to process my journey, accepting that the mixed feelings of relief, uncertainty and pride are normal.
So … who am I when the crisis is over? I’m still a food allergy mom. I still carry epinephrine and read labels. But I’m also stepping into a new season — one where I can celebrate how far my family has come and look ahead to what’s next with less fear.
Hillary Tolle Carter is a writer and caregiver advocate with over two decades of experience in media, public relations, and advocacy across agency, corporate, and nonprofit sectors. A trusted “voice of the patient,” Hillary has appeared in more than 60 national and local media interviews, articles, educational videos, and events. As a contributing writer for WebMD, she empowers families facing the challenges of managing food allergies. Her work centers on helping caregivers move through and beyond seasons of crisis. You can find her at hillarytollecarter.com and @hillarytollecarter.
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