Interview with My Oldest Life Threatening Food Allergy Child

Tell me what it is like having food allergies:

I"t is HORRIBLE because my friends are not allergic to anything. Some of them are a little allergic to dust.  I wish I were only allergic to dust.   It would be much better not having food allergies.  It would be much happier and I would feel free.  Even though it is horrible to have them, it is REALLY nice when people think of me!"

Mommy’s thoughts:  I know my little guy has a flair for the drama.  Smile.  My heart was particularly struck when he said that he would feel “free” without food allergies.  Sadly, I would say he is 100% right- it would feel freeing.  I cannot imagine life without thinking about what/how we will safely feed them (and me) and allowing him to play outside without taking survey of the grounds.

 

How does it make you feel when you eat different foods than your friends?

My oldest: “I feel sad because I’ve never been able to taste what they are having.  I want to know what it tastes like.  Other people would feel sad too if they could not eat what everyone else was eating.  I am curious even though I may not like it”.

Mommy's thoughts:  I was actually a little surprised about this response.  He has made complaints in the past in passing, but I was actually a little surprised about this response today.  I usually am able to put a positive spin on things by telling him he his able to bring his favorites while others do not get to choose.  He usually smiles and then scampers off to play.



 

A cake I made to go to a friend's birthday party with a Buzz Lightyear theme and a graduation themed mini cake.

 

How does it make you feel when people around you are eating something you are allergic to?

It makes me feel uncomfortable and unsafe.  I do worry about myself, but I know what I cannot eat.  I actually worry more about my brother because he does not understand.  I worry about people eating around him and then sharing.  I also need to make sure they do not touch his toys. 

Mommy’s thoughts:  He tugged at my heart strings yet again by letting me know that he felt a responsibility to keep his little brother safe.  That is a lot of weight and worry on such a young man's shoulders.

Our little one eating food we prepared from home.  It offers peace of mind.

Do you know how to use your epipen. 

“Yes, I would use it if there were ever an emergency.  I could stab it in my leg and then count to ten.  Then I would use my asthma inhaler and call 911.  I would do the same thing for my brother too”.

Mommy’s thoughts:  We are working on his ability to self-carry and self-administer.  He is showing signs that he is ready by asking more questions, being more responsible for his medical needs, and he has been advocating for himself more.  I am proud that he is starting this step towards independence.

Look at the innocence in this picture!  I hate that he needs to understand life and death as much as he does!

 

 

Which allergy scares you the most?

"Both eggs and fire ants scare me equally". 

Mommy’s thoughts:  Me too baby, me too!!!  And for my littlest one I fear his anaphylactic food allergies of eggs, peanuts, and tree nuts.  For myself, I fear fish and shellfish. For daddy, I fear coconuts, pineapples, and pears.   And while they are not anaphylactic food allergies - I know how sick you and I get my little one- so I fear dairy products and gluten!
 

 

What does it feel like when you have an allergic reaction?

It makes me feel like I am going to die.  I get really scared.  When it first happened I felt like I could not breathe.  But, honestly, it has been such a long time since a reaction I do not remember it well…. I just remember feeling like I would die.

Mommy’s thoughts:  There are no words to explain how a mother feels to hear these words from her child… but this is not the first time I have heard him say that.  When he first had his anaphylactic reaction he would cry that it felt like something heavy was sitting on his chest while holding him underwater until he could no longer breathe.  We have worked through his nightmares... admittedly, I still have them once in a blue moon.
 

Happiness... I wish this was all my babies (and the rest of the children in the world) knew.  Happiness & love.

 

What would you like to teach restaurants about food allergies?

I wish restaurants had an electronic scanner and I could scan something I want from a menu with a smart phone and see if it was safe.  It would be awesome if I could put my own allergies into the scanner and it would let me know if I could eat something or not.  I think it would be a lot faster than waiting on other people.  When we eat out we usually have to wait a long time for our food. 

Mommy’s thoughts:  Not a bad idea kiddo!

Until then sweetheart, we will continue to make safe foods.

 

What do you want the world to know about food allergies?

"I want people to know not to eat food all around the parks, but to eat at picnic tables and then wipe then hands off so they do not get food on the playground.  When people are done, I want them to know they need to throw away their trash.  I want them to know their contamination of people’s allergies can kill people.  I also wish I could have spy cameras around the world so they could capture people being bullies to people with anaphylactic food allergies.  The police would be able to teach them it is wrong so they would learn not to do it anymore."

Mommy’s thoughts:  This happened about 2 to 3 months ago.  He brings it up often.  It really did bother him.  Sadly, we were pressed for time and would have only been at the park for 20 minutes. There was no time to choose another park and head there.  I have discovered this is a common theme among food allergy parents.  We all agree, we just leave and head to another park. 

This is one of my all time favorite photos.

 

How could people learn more about food allergies?

"I think they could read a book or talk to you, Mommy.   But, I think I know the best way people could learn!  I think that people should have to pretend for a week that they have to eat like us.  If they had to eat like us then they would know what it feels like when they cannot eat things too.  They would also need to pretend to get sick if they made a mistake.  Maybe then people will understand it better."
 

Mommy’s thoughts:  I love the way this little man’s empathetic heart works.  I challenge you my dearest readers without food allergies, to try just what he said- no eggs, peanuts, tree nuts, shellfish, fish, or fire ants. I would love to hear back from you if you decide to attempt this challenge.  The best way to understand a person is to walk a mile in their shoes. 

Will you try to follow in our footsteps?  Help us change the world- one day at a time, one person at a time!