Thursday, March 30, 2017

living with food allergies


I have noticed over and over and over that it is impossible to truly understand the impact and challenges of living with food allergies unless you or a loved one are exposed to the struggle daily.

When Bennett had his reaction last fall to the new nut butter we tried my anxiety went into overdrive mode and it is just coming down now (mostly due to therapy). Even though his reactions in the fall ended with hives and did not affect his breathing at all, I have spent the past few months in a panic about Bennett and his allergies. 

When I am at the children's museum, or the park, or church, and a child has a peanut butter sandwich, or peanuts are served, I want to explain to people how hard and stressful it is to live with a food allergy. If you haven't been exposed to food allergies, or lived in close proximity to people with food allergies, it's hard to understand how frightening it is to see a parent pull a peanut butter sandwich out of a lunch bag.

And Bennett isn't even that allergic! His allergy is triggered by ingestion, thankfully, but it's still stressful to to take him to the park and other kid heavy places because he has a terrible habit of putting his hands in his mouth (we hand wash and remind, remind, remind, but this is a hard habit to break!).

Our friends and family have been accommodating, kind and thoughtful, but if I had to tell a new friend about what it's like to live with food allergies this is what I would say:

It is very challenging and sometimes heart breaking to have a child with food allergies. My son feels left out, he knows he is different, and it makes him sad there are so many foods he can't eat.

I spend a lot of time shopping for food and preparing meals my son can eat. Every time I shop I check labels, even if it's the three ingredient rice crackers I buy every week. Ingredients can change at any time and assuming a food is safe can have harmful consequences. Please don't feed my child anything from your cupboard or fridge or child's backpack without my consent.

There are restaurants we cannot go to because they serve foods cooked in peanut oil or made with peanut sauce. We have to bring a separate dinner for our son if we are eating out. We used to be able to go to two places and get him something from the menu, but he's been too reactive lately for us to try. If we want to "eat out" we either bring food for my son or my husband brings food home and I make a separate meal for the kids (this is what we usually do).

Holidays can be a nightmare. Finding food substitutes and safe options is hard and time consuming. (Last Thanksgiving Bennett had a smoothie while everyone else had a full turkey dinner.)

I have cried because I don't know what to make for dinner / I'm tired of eating the same five dinners that are safe for my son / I am exhausted from cooking.

I have also cried because I want to take my son out and enjoy a treat with him. Seeing pictures of parents taking their kids out for ice cream, a hot chocolate, or a cupcake because they wanted to do something special makes me sad and jealous.

Despite the challenges there are positives as well:

We are all eating healthier. I still eat the foods my son can't have, like wheat, but I eat way, way, way less than I did before. Nearly all of our dinners comply with Bennett's diet restrictions, which means at least one meal a day (and usually two because I often eat leftovers for lunch) is free of gluten, soy, corn, dairy (mostly, I do love cheese) and preservatives / food dyes. 

My son is learning compassion for himself and others. He knows what it is like to feel different and he carries heaps of kindness and empathy in his little heart.

I've learned a lot about cooking and preparing meals from scratch with a handful of ingredients.

And here's some ways you can help:

Be considerate and try to remember the food restrictions. I know this is really hard to do! Right now Bennett's list of restricted foods is so long it is easier to list what he can eat than what he cannot eat!! But the kids who remembered my son's food allergies on Valentine's Day and made sure he had a non-food treat in his bag made my day - not to mention his.

Think twice about bringing foods with peanut butter to kid focused places and events. For kids with airborne or contact allergies just breathing in or touching the allergen can cause anaphylaxis.

If you have a child with food allergies over for a play date:

- Please wash your child's hands and wipe the table down after they eat.
- Don't let them play with toys while eating unless you plan on washing them.
- Don't let them wander around the house with food (my son eating a small bit of peanut butter cracker off the floor when he was 9 months old led to an ER visit and his Epi-pen prescription)
- Musical instruments that touch the mouth are not to be shared (whistles, harmonicas etc.)

Parents of children with food allergies appreciate your kindness and consideration! It is so stressful to be in an environment where allergens are. When there is a safe place for us to drop our time consuming vigilance and let our kids play and make friends our whole family benefits.

Does your child have food allergies? Do you have a friend who has a child with food allergies? What is living with - or near - food allergies like for you?

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