No, it’s not for attention.

I know some people may think that I’ve shared too much. They may feel that information about my daughter’s allergies has been shared in an effort to get attention or that it’s disturbing that I’ve shared so many details about my child’s health publicly, and on the internet.

I’ve chosen to share this information because food allergies are something that my husband and I have become incredibly passionate about. Our daughter, along with 15 million others in our country, has life threatening food allergies. We have realized, a year into our research and struggle to adapt and understand, that even our closest family members cannot begin to understand the challenges we face or how difficult it is to keep our daughter safe.

We’re sharing this information because one day our daughter will have to share it too. She will have to feel knowledgeable and confident when she shares it. Every time she meets someone she will have to explain her food allergies. She will have to explain why she has to bring her own food to the catered lunch meeting, she will have to explain why she can’t eat out with her colleagues, and even why maybe having a first date at a restaurant isn’t in her best interest. She’ll have to explain this information far earlier in her life – when she starts kindergarten in a public school – and she’ll hear me and her father explain it when she goes to pre-school.

This is our norm and we have to talk about it. We have to turn her into her own biggest advocate before most children ever consider their health and consequences of health-related decisions they make. She will have to be comfortable talking to children and adults in a way that I don’t think I was able to do until I was in my late teens.

She’ll have to justify her reasons for not engaging in an activity with her peers. She will have to convince unaware people that she’s not just being a pain, but that she has deadly allergies. She’ll probably have to detail her emergency room visits as further evidence of her allergy.

Think about it: How many times have you asked someone to go through this song and dance when they share something personal and invisible with you?

Our daughter will be able to do all of these things because she’ll have witnessed us do it. We’re practicing now so that we can show her the ropes. So many of our friends have told us that their kids with allergies are super confident. They have no problem eating alone in the cafeteria and explaining their allergies to adults. They are their own best advocates. This is because they have parents who advocate for them and teach them not to be shy about it.

Our daughter’s response to her first job offer will go something like this:

“Yes, I’d love to accept the position. I can start as soon as you’ll have me, but I’ll need a place to keep my own mini-fridge and maybe a private microwave, because I have to bring my own food every day. It must be kept away from everyone else’s food and sticky office spills.”

Our daughter will be making requests like this from the moment she’s able to verbally make them. Maybe it’s different from the norm, but it’s not unique and it’s required for her safety.

She’s learning from us every day. We share this information all the time. Sometimes it’s uncomfortable, but it won’t be by the time she goes to school and the stakes get a little higher. I am passionate about spreading information about food allergies and my daughter will learn from that.

I’ve learned so much about food allergies that makes me want to spread this information. I feel like I need to spread this information.

15 million Americans have food allergies and the number of new cases developing each year is growing (the CDC states that food allergies increased 50% between 1997 and 2011). We didn’t hear about food allergies before because there were significantly fewer cases.

Millions of dollars and researchers are working on finding a cause and a cure, but they haven’t yet (and no, I didn’t cause my daughter’s allergies in utero or while breastfeeding – but that’s for a different post.). Food allergies can develop at any point in your life; I just heard about a 54-year-old suffering anaphylaxis while eating a fish he had always eaten. Everyone should be paying attention to this issue.

I am passionate about stock epi laws. Laws that will protect people suffering from anaphylaxis in schools and in public, that don’t have an epinephrine auto injector prescribed to them. We’re prepared for anaphylaxis. Families with food allergies are prepared. Are you?

I am passionate about changing the way our country labels food. Only the top 8 allergens are required to be explicitly labeled. Other countries label 10. These countries also tell you EXACTLY what you’re eating on a label, so if you’re allergic to something outside of the top 10, you’ll see it on a label. That isn’t the case in this country. Even if you don’t have allergies, this should be disturbing to you.

I am passionate about the fact that food allergic children fed with food stamps can’t afford the allergen-free foods that I buy for my daughter; sometimes their non-allergic siblings go without food so that they can have safe food. I don’t need to say anything else about this topic. It’s disgusting and if you don’t agree, you’re a jerk.

I am passionate about the fact that food allergic children are more likely to be bullied in a school setting than their non-allergic peers. Parents don’t understand food allergies; they just know that they suddenly have to be more creative than a peanut-butter sandwich and that really ticks some of them off and they talk trash…about my baby and other children. Their kids learn from them, and that puts my child at risk for bullying AND anaphylaxis at school. Not okay.

These are some of the many reasons why I’ve chosen to share our story, most of all, because one day my daughter will have to share it too. She’ll be sharing it to everyone she meets and wants to share a meal with her. People that want to eat around her will have to know, too. I can’t count how many people who have eaten around me, but it’s a lot of people. My daughter needs to be prepared for this interaction and every question that may be asked of her.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s