I have a child with life-threatening food allergies.
It’s a worthy opening statement. I mean, it says it right there . . . life-threatening. That means my baby, my boy, my heart, could die because of something he eats. EATS. My 6-year-old. Can you imagine? Can you grasp the severity? Do you feel the fear? It runs deep within my blood.
Giovanni was diagnosed with multiple allergies (10+) when he was about 8 months old. Over the years, we have found a way to make this work for our family. It was hard, learning everything we needed to know. And we are still learning. We grow and we adjust because we have to. Things are always evolving. But the fear doesn’t disappear—it just fades deep within. And I know that at any moment this feeling can come pouring out of me.
I know there are people out there who get it. I know there are others dealing with similar or worse things. But this is my personal daily battle.
And for the first time, I feel comfortable saying I am unapologetic about how intense I can be when it comes to the safety of my son.
Each year we go in for testing. His skin gets poked and his blood gets drawn. And each year we get the same results knowing we will be living this way for years to come. While he has outgrown a few allergies (thankfully), he still has the most severe allergy to sesame, poppy, and tree nuts.
This past year we have been safe in our little quarantine bubble, it was actually a really nice break from living the allergy-mom life. I didn’t have to pack food to go places or wonder if someone ate unsafe food before hanging out with us or coming into our home. We had a crazy low number of allergic reactions this past year, and it has been so incredibly nice. I don’t think I even realized it until now. God help me when my kid does go to school one day (kids are going back to school sometime soon right??!).
Finding the good parts of this pandemic is hard, but they are there. I can remember a few months ago someone telling me about their first airplane experience since COVID hit, and how they carried sanitizer and wipes, cleaned their seat, and had to be extra careful. And in my head, I was thinking, welcome to my life (in a joking way but for real).
When we travel we pack all of our foods because there is usually nowhere safe to stop and grab a quick meal. We have found a few places that will work, but nothing that we can count on.
It’s part of the heavy load that often goes unseen.
We had a scare recently at a neighbor’s birthday party. Parties are actually the worst. If you are not an allergy parent then just try and picture this . . . you have to call ahead to see what will be served, you have to educate the host on your child’s allergies, you pack your own snacks, you wash hands frequently, you stay close to make sure there are no accidents (but not too close in fear of hindering their fun), and you basically live for the whole party with your heart outside of your body. Not the most relaxing event.
This particular party was a small, close circle, and I felt comfortable. But the party reminded me why you actually can’t ever feel comfortable when you have a child with allergies. Accidents are accidents and no one ever means for them to happen. The fear was undeniable, and it brought me back. Wake up, Beka, this is your life. Do not let your guard down. Do not feel safe. Do not stop being vigilant.
A few months pass and the world seems to be getting a bit back to normal. We started seeing more family and friends again. The boys have essentially done nothing for over a year, so we felt that it was time for them to go to their annual summer camp with their grandparents. We took them for their first week—set up everything, stocked the fridge and snack drawer, met with the office, labeled all his medications for an emergency, reviewed with his caretakers in detail, gave him a watch with a medical tag, packed his daily backpack with a medical kit with epi—we did all the steps. We did everything we could to prepare him. It still wasn’t enough.
Sending your child to summer camp when they face these challenges is a whole new level of discomfort. But look at this kid, he deserves to feel normal, especially after this year.
So we do the hard work to make sure he can participate.
You can do everything in your power to ensure everyone is on board. You teach, you show, you guide. But you can’t be everywhere and at some point, you do need to let go. I let go. I went home for a few days to be kid-free and enjoy time with my husband. I really needed a break. I felt comfortable.
It was right when I felt relaxed and thankful to be spending some time on self-care when we had another scare. This time more real because I was over an hour away from him. My heart sank in anxiety as I ran through all the things I needed to relay to the people he was with. I needed to get to my baby. I needed to hold him. Would he be OK? Would I lose him? My mind played hideous tricks on me as I replayed the day and all the things that went wrong. Why did I leave him? Why didn’t I do more to prepare people? How could I let this happen?
The most important fact of this message is that he is OK. He had a growing uncomfortable rash that lasted nearly five days, but he is OK. His reaction was not anaphylactic, and for that, we are SO so grateful.
I did not lose him.
He is alive.
Repeat. He is alive.
After a few days of recovery, he is doing much better physically. But we as parents are not the only ones who will suffer emotionally from this. He has already mentioned to me on many occasions how he hates his allergies and wishes he was different.
He told me this time that he feels unsafe if I leave him. My heart broke.
I thank God every day that he did not ingest his allergen. His reaction was simply just from him touching a plate that had the food on it and playing with toys with others who ate his allergen. It is a combination of a lot of things (hot weather, sunscreen, pool, lack of awareness of his growing rash, and lack of proper treatment) but ultimately touching his highest allergen food set his body into survival mode.
He is OK now. I have to keep telling myself this even a week later. The pit of my soul was awakened. He is OK, but he just as easily could have not been. He could have died. And to me, this is the hardest part. Knowing that a small mistake can be fatal. It is devastating.
It is hard to fully explain the severity and reality of this to people. And I truly don’t expect everyone in our lives to fully get it. In fact, most people don’t get it. It is a lot and really difficult to constantly manage. For so long this weighed on me. I am sure it always will in some way.
But ironically, this very minute I realized something. My heart feels like it’s been cracked wide open. As if I am expanding to the next layer of myself. Growing. Changing. I feel raw and vulnerable, but also at the same time extremely strong and fierce.
I feel like every moment, every low, every high, the struggles, the joy, all of who I am was literally made to be his mom. I was made for him. He was made for me.
It’s like the universe knew we were meant for each other. My son. The one who was the biggest most extraordinary surprise of our lives—the boy who made me a mama. This love and desperate need to protect and be close is exhausting. But if you have a kid with severe food allergies, there is literally no other way.
In the past, some would make fun or tease me about my tendencies to pay close attention to detail. My need to control things or be extra prepared. But in hindsight, these are the exact qualities that have made me perfect for Gio. And for that, I am proud of myself. I can honor these qualities with dignity knowing I am hand-picked to be his mom.
It’s been six years, and I finally find myself reflecting and trusting that I am made for this. This journey in motherhood has made me that much stronger. But more importantly, it is making my son stronger. He is growing to learn how to advocate for himself. He is going to understand how to stand up for himself and others. I want him to see how hard it is to change perspectives, but that it can be done.
All in all, it was a learning experience for everyone involved. Are we disappointed this happened? You bet. Are we fearful it could happen again? Definitely. Will we leave him at camp for the last two weeks? Absolutely not. But we will stay with him so he can attend camp like all the other kids. But this mama will be there to ensure he is safe and well taken care of.
Do we get a break? Not yet. But him surviving takes priority every time.
We want him to have a full life of fun and regular activities and we do our best to provide him that. His face of joy heading to camp is proof that we can make this work. It just might mean that we as parents have a bit more work cut out for ourselves, but I have accepted this.
If you feel alone in this journey, rest assured you are not. The struggles we face as allergy parents can be worn as a badge of honor. We keep our babies safe, and we love them fiercely. And we do the ugly job of protecting them from family members, friends, at parties, social gatherings—wherever we might go and whatever we might do. We teach our kids to know the signs, and we make sure we do our best to avoid accidents. We are warriors, and we will raise them to be warriors too.
I was hand-picked for you Giovanni. And I love you to the moon, back, and all the stars.
Originally published on the author’s blog