Forget food fights, it’s a battle royal
Food allergies have taken a toll on my family, but social media has been my salvation
It is impossible to understand how lonely food allergies are until you have a child that struggles with them.
Here I was holding my brand new baby, having no idea how hard and isolating this journey would be. I spent the first 6 months of her life leaning against the wall while she slept. The beautiful crib lay empty because she had to sleep sitting up.
The doctor told me nothing was wrong even though she would vomit everything she ate. He said the full-body rash that bled and oozed was just baby acne and heat rash. When she ended up in the hospital with RSV (respiratory syncytial virus) that was the last straw. From there on I spent my life on the internet looking for the answer as to why this was happening. I found so many parents who were going through the same thing.
I took control and found specialist after specialist until my daughter was diagnosed with food allergies, eczema, acid reflux and asthma.
According to researchers at FARE (Food Allergy Research & Education; www.foodallergy.org.) 32 million Americans have food allergies, including 5.6 million children under age 18. That’s one in 13 children or roughly two in every classroom.
If this is true, why is it that so many parents must go through what I did to help their children? Children and their families with food allergies are often left to fend for themselves, partly because we’re considered an inconvenience or we’re just misunderstood.
After multiple skin tests and blood tests, we were handed a paper that listed all her food allergies then shoved out the door. “OK, now what?” I thought. With a list of allergies including eggs, soy, beef, dairy, shellfish, fish, tree-nuts, peanuts and gelatin I didn’t know how to safely feed my child. There was no more going out to eat, or easy-to-make meals.
Food labels were the biggest hurdle. We had to avoid “may contain,” “processed in the factory,” and “made on shared equipment,” There are so many ways dairy can be written on a label — whey, dried milk, casein. The scariest thing is that sometimes “secret” things have been added, so each time you feed your child something you hover and ask them a 100 times, “are you OK?”
The internet became my haven. We fought and won many battles over the years because of other parents. I joined food allergy groups on social media, sharing each other’s stories, experiences, and ideas for food recipes. Over time it became like a second family to me. I was able to vent when I needed to and these parents understood why I was angry. But the best was sharing each other’s successes, like when a child passes a food challenge or we find the perfect safe cookie recipe.
The emotional toll this has taken on me as a parent is indescribable. I have spent many nights crying in the bathroom or sleeping on the floor by her bed because she had contact with something she is allergic to. Statistics and facts can’t tell you about how hard it is for the children who have allergies or their parents. Being a food allergy parent is life-changing, but the internet has made it possible for us to come together with social media groups which can be a lifeline. Even Pinterest becomes your best friend, with recipes and ideas.
We are still battling this war. Some days are better than others. Birthday parties are still stressful, but each time they become more fun and less scary. From my experience, I can tell you there is a light at the end of the long tunnel. There is hope, I promise. All food allergy parents have your back. And if you know someone with allergies, just letting them know you care can make a hard day better.
Courtney Johnson is a YA Science Fiction writer and will graduate in 2020 from Southern New Hampshire University with a degree in creative writing and English. Courtney is a member of the International English Honor Society and the National Society of Leadership and Success. She lives in a small town in New Hampshire with her husband, three children, and crazy, but lovable dog.