In the Dark by Karli McNeill
With rainbow lights rolling
And white noise humming
A request to snuggle will be made
Blankie wrapped loosely
And Ellie tucked closely
Together we sing, a sweet serenade
His skin tacky to the touch
Am I doing enough? Or too much?
I pray rashes from today will fade
Sleep well. Dream well.
Rest well. Please . . . be well.
Please don’t take my sunshine away.
The Weight of Food Allergies
I wrote this poem after a tough skin day with my son. We went through our bedtime routine, which involves layers of skin products. I was debating if I needed to give him a dose of Benadryl to help with him scratching at his legs. I’m always weary of over-medicating, but also don’t want him to be in any discomfort.
I hardly made it through singing our normal bedtime song You Are My Sunshine before the tears started flowing and the weight of the mental load of his allergies and skin issues became just a bit too heavy for me at that moment. Getting my feelings out through poetry helps me cope.
He is my youngest of two sons and will be three in June. He has seven food allergies, eczema, sensitive skin, and asthma. We have had countless doctor’s visits, ER visits, and pokes and prods. He has become a professional patient and honestly handles blood draws better than I do. He self-soothes with deep breathing when things get tough, and he knows what his EpiPen is for.
This little boy also has the most infectious laugh. He will brighten up any room with his loud singing and phenomenal dance moves. He goes with the flow and is happy to chill as long as he has a good snack and someone to share it with. My son is so much more than his allergies. We try our hardest to build a life and systems that allow him to move through life with as few barriers as possible.
Moving Through the World with Food Allergies
Taking a two-year-old into the world with multiple food allergies is scary. He can’t tell me when he feels a symptom coming on. We don’t let him eat certain things, and he doesn’t quite understand why. He can’t speak up for himself when an allergen is nearby. His big brother is quick to ask, “Will that hurt Mayer’s belly?” when a new food or treat comes along, but my span of control does not cover every situation he could encounter.
Food allergies can be life-threatening. According to Food Allergy Research and Education, there are 200,000 people in the United States each year who require emergency medical care for allergic reactions to food.
I notice every scratch, every new rash, every heavy eye blink, and every cough. I also notice every belly laugh, every new word and phrase, and every smile gifted to us. The constant body scan my mind runs on him collects every piece of information–the goodness of my son, and also the potential red flags of a life-threatening allergic reaction.
As a family, we make hard decisions of what events to attend or what restaurants to eat at. Each decision, we evaluate if we have the mental resources at the time to ask enough questions to feel “safe enough” to go somewhere, or if our own tanks are so empty that it’s just safer to skip the evaluation and stay home. As he gets older (and outgrows more allergens–in 2021 we were working with ten food allergies) and we get more seasoned with this lifestyle, I hope things will be a little easier. For now I will always have two EpiPens, a day’s worth of snacks, and a Mayer-safe cupcake and pizza slice in tow for every birthday party we attend!
How You can Foster Allergy-Informed Visits
We are lucky enough that our close friends and family take a couple extra steps to think about our son when they are hosting us, whether for a birthday party or just a play date. Each allergy parent handles situations differently–the best way to be prepared is to offer information to the parent up front. Here are some examples of what friends and family have done to lighten my mental load when Mayer is invited:
- Asked about allergies when the invite was extended. This lets me know that the parent is open to conversation and at least conscious of allergies, and lowers my anxiety levels when I go to ask them questions about the event. I try to do this when I plan events for work as well.
- Informed me of the food, drinks, and treats that will be served ahead of time. This lightens my mental load of wondering what to pack for my son. I can prepare safe food that matches what you’re serving. Or if it’s safe food, then I can pack a little less stuff than normal. I don’t expect everything to be free of all his allergens. But simply knowing what will be there helps my risk evaluation. It’s a huge bonus if the original packaging is available for me to look at the ingredients label!
- Made a goodie bag without food, or asked ahead of time what his favorite snacks and treats are. I know that sometimes the small trinkets can be annoying or seem like a waste, but both my kids love them and it’s great to not have to “take away” a gift because my son is allergic to it. If it is a treat-based goodie bag, it was so nice when my friends reached out to see what safe swaps they could make for him.
- Be open and pleasant during conversations. I hate feeling like a burden or an inconvenience, but I really do ask questions to ensure my son will be safe during our visit. Please don’t get defensive or offended with my questions–I’m not doing it to make you feel bad, I legit just have to weigh out the risks before we go anywhere!
As an allergy parent it is my responsibility to seek out information and evaluate the safety of my son at any location and I do not expect accommodations everywhere, but these are simply small steps you can take to make it a little easier for your friends with allergy kiddos in tow. Even just knowing that my friends care about the safety of my son helps so much, and I hope these prompts can help you foster an inclusive environment for the allergy kids in your life too.
