What I Wish You Knew

     First of all, allow me to start this blog post by saying one thing: I know that food allergies are not the end of the world as we know it.  I know that having a child with food allergies is NOT a curse...and I THANK GOD every single day for my son, just the way he is, because I know there are so many things in this world worse than food allergies.  Now that we have gotten that straight...let's get down to business.....

What I wish you knew:

1.  I am probably the MOST laid back "food allergy mom" that you will ever meet.  My son who has food allergies is our third child -- everyone is a bit more laid back by their third child.  I find myself saying things like...."Please don't climb up the outside of the stairs without at least holding on...."  "Yes, you can have dessert before dinner as long as you quit asking me questions...."  You get the drift.  Plus, my son's food allergies grew over time (as most food allergies do)...he started out only allergic to egg, that grew to include peanuts and tree nuts the following year, within 3 years as he started kindergarten his allergies had grown to include soy, all seeds, and latex.  So....yes, as overwhelming as that all is, I did get the chance to digest and learn to live with reading labels/questioning restaurant staffs/finding alternative foods a little at a time before a new allergen was thrown at me.  And, finally...probably because he IS our third child...we try to live in a balance of real world versus safety precautions.  We don't inspect the table when we sit down at a restaurant (or at least not unless something is GLARINGLY dirty)...we order food for ourselves that he can not eat even if he is sitting with us at the table.... The bottomline is that these things are GOING TO HAPPEN IN REAL LIFE...so we practice them.

2. Please...keep #1 in mind as you read the rest of my list...I AM THE LAID BACK ALLERY MOM.  I will guarantee you that most other moms you meet in my shoes would scare you to hell and back if they found out that an allergen got within 10 feet of their child.  Why?  That's simple...because you are, quite literally, dealing with life and death.  The life and death of MY CHILD.

3.  I have made a LOT of mistakes as a mom....and some are scary food allergy mistakes.  I do not EVER want you to feel that way.  I never want you to see my child react violently to food that you have given him without knowing what could happen.  It is one thing for ME to live with mistakes I make as a mom that must deal with food allergies 24 hours a day, 7 days a week, 365 days a year.  It is quite another situation when I entrust my child to your care (be you school, church, babysitter, summer camp, etc), and I make sure that you are FULLY aware and trained about his food allergies and YOU make a mistake.  That is simply not something you want on your conscience...because believe me, those pictures of a child having an anaphylactic reaction that COULD have been prevented is NOT one that you want seared into your brain.  You do NOT want to live with the "What ifs?" that crawl around in my brain constantly.

4.  I wish you knew what a helpless feeling it is to send your child into any setting where there will be food and spend the time PRAYING that your 7 year old is wise enough to ASK if he can have an item of food before eating it.  Or the prayers I say in hopes that my 7 year old son doesn't just want to "try a bite" of his friend's snack.  The bottom line is....my son is SEVEN...and I have to trust him to, at least to some degree, be his own best advocate because I can not sit beside him all day, every day.

5.  I wish you knew the real reason why his father or I are sitting through most all athletic practices, extracurricular activities, and playdates when (YES!) we have 100,000 other things to be doing.  It's because we are scared.  We are scared that someone will unknowingly offer our child something that they think is "safe" for him to eat or drink...  someone that he sees as a trusted adult...and that will be  the time the epi-pen will have to come out and literally spring into action.

6.  You know that lost feeling you get for a few moments when you realize that you have left your cell phone at home?  Take that feeling times a million and then you will know the tip of the iceberg of how it feels to realize you have left your house without benedryl, two epi-pens, and latex-free bandages.  Those three items can be, and often ARE, life saving.  It's why allergy moms and dads have epi-pen stashes in their purses, briefcases, glove boxes, at home, at grandma's, at school, with the babysitter, etc.  We need to know that our child is safe wherever we go...and without that epi-pen pack, we are lost.

7.  I wish you knew that benedryl only masks and helps with allergic reactions to food until it wears off (3-4 hours later)...if the allergen that was ingested in still in the system, a child with a food allergy will have a "rebound" effect...the benedryl wears off and the child begins to react all over again.  The body is still fighting the allergen that is in their system.  It's why we let our children sleep on our floors at night...or sleep with them...with our hands on their chests...to make sure they are still breathing easily after they have needed benedryl from "feeling funny" after eating.

8.  I wish you knew how it feels when I see my son begin rubbing at his ears, sneezing, or pushing his plate away from himself during a meal.  Could be the signs of a picky eater....could be the signs of a child who is reacting to an allergen in the food.  I have learned...I do not ask my son to "eat more" when he pushes his plate away.  I quit trying to guess about itchy ears or him telling me that his throat/tongue itches, I just go straight for the benedryl with no hesitation.

9.  I wish you knew how it feels to not be able to even step foot into certain restaurants.  Any steakhouse that throws peanuts around or has bags of peanuts/peanut dust lying about is OUT.  It does not matter if it is the favorite restaurant of every family member...when your child with food allergies can not even grace the doorway??  It's OUT.  That includes the coupons that food allergy children get for reading books or the free ice cream coupon in a kids' meal....they are no good to us.

10. I wish you knew my son's allergen numbers...so I am just going to TELL you!
IgE  = in a blood test can show the amount of allergen-fighting your body is putting up for various food/environmental items.
an average person has an IgE of 12.0
+1 standard deviation from mean = 48.0
+2 standard deviations from mean = 192.0

My son has an IgE of 3511.  No.  You read that correctly....three thousand, five hundred, eleven.  When I first saw this number my gut reaction was: "His body is attacking EVERY bit of food that he tries to eat as an allergen...."

In this same battery of blood testing, it was shown that my son is allergic at an anaphylactic level to:
egg white
egg yolk
peanut (off the scale the # was high)
soy (off the scale the # was so high)
latex
Brazil nuts
almonds
coconut
pecans
cashews
pistachios
pine nuts
walnuts
sweet chestnuts
macadamia nuts
hazelnuts
sunflower seeds
sesame seeds

11. I wish you knew how much it means when my son is invited to a playdate or a birthday party for that mom to contact me and ask about "safe foods". It truly is the biggest gift.

12. I wish you could watch my son's friends (also 6, 7, 8 years old) be HIS advocate.  I have seen his friends tell birthday party hosts "Now, Vince will NOT be able to eat that cake...he is allergic to eggs."  It is beautiful and a true testimony that CHILDREN love one another, unconditionally.

13.  I wish you could feel the disappointment that I feel as a mother to a child with food allergies when I have done EVERYTHING I can do to help....volunteer, serve on boards, stand as an advocate to all children with food allergies, offer to share my son's story (and my mistakes as a parent) as an example to those who work with him and me most closely ... only to hear responses such as "We have already been trained for food allergies."  or "Well, kids with food allergies will just not be able to eat at the event."  Both of those statements are ignorant, short-sighted, and exclusionary.  As a society, we have made buildings accessible to those who are in wheelchairs, helped children with special needs  join the "regular" classroom setting.  How are my son's food needs any different?  I would never ask for special food to be provided for my child...I pack his lunch for school every day; we pack food and snacks anytime we go anywhere in anticipation that the food available may not be safe for him.  But, as a mother, I BEG of you.... a. supply me with a list of ingredients for items you are serving...yes, I will need to see the packaging label  and   b. do not offer food to ANY child without asking their parents beforehand.  You never know what that child may be allergic to, sensitive to, or intolerant of.

14.  I wish you could find a way...a language..that does not minimize food allergies.  I TOTALLY get that unless you HAVE a child that is severely allergic to something that you will never feel the deep, hollow, scary feeling that I hold onto.  But, please do not minimize my emotions...because by doing so, you are minimizing my child's life.  He will, quite literally, die if you feed him the wrong thing.  Please remember that.

15.  I wish you knew how very much I appreciate those of you who try to walk this journey with me.  Those of you who have been trailblazers and cleared the way for me/given me advice and tips on how to survive and help my child survive too/given me the voice to stand up for my child - those of you who educate yourself and ask me questions to keep my child safe and alive - those of you who find a way to show empathy in the face of a scary situation that you are not familiar with....you are the heroes to me.

And that last group deserves a huge mention!  It is very hard to understand food allergies, their seriousness, and the emotional toll they take on the family without having experienced this yourself.  To you, I say THANK YOU.  Thank you for trying to learn more and understand more...and I will FOREVER be grateful that you do NOT know these feeling first hand.  Just like I will forever thank God for giving us food allergies to deal with as a family....because things could certainly be worse.

Much love to you all!
Learn more by visiting foodallergy.org

I guarantee you will learn something you had NO IDEA about....like did you know bananas, latex, and kiwi all fall into the same allergen category???
Strange but true!

xoxo Jennifer