Kiley Oesterreich, creator of @allergy_mama_diaries on Instagram wrote a beautiful letter to her daughter with food allergies and EOE that touched our hearts. The letter captured feelings we should have expressed to our allergic son when he was small, but couldn’t find the right words of reassurance and the stillness to write in the thick of parenting little ones.
We’re passing it along to you — our community — to put heart-full thoughts into your day about your loved one(s) with allergic disease…
My daughter Lylah has food allergies and eosinophilic esophagitis (EoE.) While she currently avoids dairy and all nuts, at one time she was allergic to many things beyond dairy and nuts, including wheat, soy, eggs, bananas, pineapple, cauliflower, carrots, broccoli, honey, rice, oats and a few others. At one point it was easier to name the foods she could have rather than the ones she couldn’t.
Lylah was sick with acid reflux as a baby and needed special baby formula without cow's milk protein. The reflux made her a somewhat ‘unhappy’ baby much of the time. Around age one, the vomiting started. There was no pattern, no rhyme, no apparent reason.
We made endless trips to the doctor and were sent home because she didn’t present symptoms during the visit. After a year of not giving up, we were finally referred to a pediatric allergist and a GI specialist. She tested positive for food allergies to a long list of foods and her doctor referred us for an endoscopy to check for EoE.
After what seemed like forever we finally had answers. Lylah was allergic to so many foods, it was overwhelming. Plus she had EoE — this chronic disease — that was causing all the vomiting. It was a blessing that Lylah was only two at the time so it was easy to remove foods from her diet.
The impact on our family was huge. Her life was in our hands and she depended on my husband and me to keep her 100% safe, ALL THE TIME. Honestly, it was very stressful for me as her mom — to keep her away from unsafe foods, to stay on high alert around other people who didn’t understand her condition, to never let my guard down at parties and holiday gatherings.
But time passed and our way of life became our ‘normal.’ Now it seems almost ‘easy.’
But sometimes it’s not.
Now that Lylah is older and in school it can be hard because she’s around many other kids and their food. She packs her own lunch each day for school and isn’t allowed to eat any food unless she brings it from home. And socializing can be tricky.
I wrote a letter to my daughter to encourage her, to share important things I want her to know about her food allergic life. Sharing it here.
To my daughter with food allergies: I NEED you to know...
There is more to life than food.
Food is fun. It's delicious, but it's just fuel for our bodies. It doesn't define you. You are not less than because you can't eat everything someone else can.
Some people may make fun of you. You may even hear adults crack jokes, but I know God created you for a purpose. You can respond with grace and educate them.
You are not a bother.
You are not a nuisance. You are a daughter of a King and are perfectly made in His image.
Tonight you went to a birthday party where you couldn't have pizza or the cupcakes, but you didn't bat an eye. You had so much fun and it was just a joy for you to be around the people you love.
Remember that.
There is joy in all things, as long as you choose that joy and don't let the cannot's bring you down.
You are so smart and so brave.
I am confident in leaving you knowing that you would know just what to do in an emergency situation.
You are strong.
Remember that. Always.
With love, mom ❤️
My hopes for the future?
In the future I’d love to see food completely shut out from all school activities and lessons. I think there are plenty of ways to learn and food doesn’t necessarily have to be a part of the learning process.
I also hope to see more allergy friendly restaurants around. Some places are allergy aware, They're good with them. But other establishments don't have the knowledge required to keep a diner with food allergies safe. How awesome would it be if restaurants where every food allergic person could feel 100% safe eating were the norm, rather than the exception?
I keep working, along with many others in our community, to spread awareness about food allergies and to educate others on just how dangerous they can be. Some people literally have no idea — it’s not part of their lived experience — and it isn’t their fault. But I do think that our nation, as a whole, needs more education about food allergies and how to keep people with food allergies safe and included.
About the Author: Kiley Oesterreich is a working mom of three from Wisconsin. Her daughter has multiple food allergies, as well as eosinophilic esophagitis (EoE). She enjoys sharing their journey navigating life with food allergies and a rare disease on Instagram. On Instagram she shares safe foods that are nut and dairy free and takes you along on their journey using dupixent for her daughter’s EoE, all while raising awareness one square at a time. Her family’s faith has been strong and important to them throughout some very long and often tough years.
Image: Courtesy of Kiley Oesterreich