What I want you to know about having a child with severe allergies

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here.  Today’s guest post is by  Erin.

I have four daughters. Each of them is beautiful and equally brilliant. They all love to swim, tumble, dance, read books, play, and snuggle for movie dates with Mommy and Daddy. My oldest has curly hair, glasses and a fierce competitive edge. My two youngest both have big brown eyes, infectious giggles and imaginations bigger than Never Land. My second-born, Ava, is the only blonde and the most caring of the bunch. She is genuinely kind to everyone she meets and loves to help others. She is also my only child with food allergies. 

In November of 2006, my husband and I welcomed Ava to our family. I had an amazing labor and delivery. After my water broke, she was born 45 minutes later (I know. I know. Don’t hate). My husband, a third year medical student at the time, did the delivery. She was the first baby he delivered on his own. Ava was the easiest newborn. She nursed like a champ and slept like a rockstar. When Ava was about three months old, she started developing many different skin rashes. She was diagnosed with atopic and seborrhoeic dermatitis (various forms of eczema). We spent the next few weeks back and forth at the pediatrician and dermatologist to try different creams for treatment. Over the first couple of years of Ava’s life, we worked to find a balance of many natural and organic products to keep Ava’s skin clear and healthy. We use unscented, homemade goat milk soap for showers (bathing is a no-no for her), a natural laundry detergent and we use organic coconut oil on her skin. She wears cotton clothing and will probably never have a bubble bath. Unfortunately, managing her eczema is not the only challenge she faces. 

When Ava was three, my mother took her to an art class with my oldest daughter. When they got in the car to leave, the girls were hungry so my mom got a bag of walnuts out of her purse. Within a minute, Ava’s face began to swell. My mom drove her to meet me down the street. As soon as I saw her, we drove to the hospital immediately. By the time we got there it had been five-ten minutes since she ate the walnut (fortunately, the hospital was also down the street). Her eyes were nearly swollen shut and she was wheezing. Her face was nearly unrecognizable. A nurse in the emergency department asked me two or three questions, pulled down her pants and gave her a shot of epinephrine before we had even checked in. They cracked open Benadryl capsules mixed them with some applesauce and began pouring them down her throat. Thankfully, the medicine began to work immediately. We stayed there for several hours until we were sure it was safe to take her home. 

During our time at the emergency room, I was so focused on making sure Ava wasn’t scared and cuddling her to keep her calm, the seriousness of the situation didn’t hit me until later that night. The reality was that my daughter could have died. She was struggling to breath and the struggling could have turned into lack of breathing very quickly. We had no idea Ava had any food allergies. I’d never thought to have her checked for any food allergies. After testing, we determined Ava is severely allergic to all tree nuts: walnuts, cashews, pecans, almonds, hazelnuts, etc. Fortunately, she is not allergic to peanuts. (Peanuts are a legume and therefore a different allergen).

Fast-forward three years and here’s what I want you to know. I have a child with a food allergy. We manage it and live with it every day. Every parent makes different choices for their child. Parents of “food allergy” children are no different. We have lists of safe foods and rules for foods we are not comfortable with. Our family rules may be different than other families and that’s okay. Please do not do the following:

-Tell me that food allergies are in somehow my fault or anyone’s fault. I followed the “rules” of baby care. I nursed exclusively (I never even pumped. Direct from the source every feeding). I didn’t smoke, drink, do drugs, eat crappy food, etc. Whether there was anything I could have done to prevent this is a pointless conversation. 

It is here, it has happened. She will never outgrow this and it is not going away.

-Tell my daughter you feel sorry for her. She doesn’t want your pity. She has an allergy and she deals with it. Please don’t make her badly about it.

-Tell me it’s okay to let her have something to eat after I’ve said no. I realize you think the cupcakes you made are nut free, but we’re not taking any chances.

-Tell me that allergy parents are over-protective. Have you seen your child’s face swell and airway close? Don’t judge, okay? It’s scary. We’re doing our best to keep our kiddos safe.

-Tell me how you never knew anyone with allergies growing up and it’s overly diagnosed now. Well, okay. How do you want me to respond to that? My daughter does so it doesn’t change my reality.

This year, Ava will be in first grade. She knows her allergy and knows it well. She will be carrying her Epi-pen and Benadryl with her in a trendy waist-pack every day. She knows how to use it and prays she never will have to. As a parent, it’s scary to send her off. I know there are nuts in the school (and grocery store, and restaurants, and friends’ homes, and snacks at extra-curriculars). As a parent, I can’t keep her locked up in our safe, nut-free zone. I have to let her experience the world. I also have to educate as many people as I can. Her teachers, her classmates, friends, parents, coaches, neighbors, and family will know about her allergy and I will be vigilant.

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