Sunday, December 7, 2014

Dear Parents, Friends, Family, Strangers who have never dealt with severe food allergies

Dear Parents, Friends, Family, Strangers who have never dealt with severe food allergies,

I get it.  I get that you think we are overreacting.  That we are being drama queens when it comes to reading food labels, questioning every ingredient you put into your freshly baked cookies, when we have to shun your kid's birthday cupcakes because they contain an ingredient that we have to avoid.

You've never seen or experienced a major allergic reaction, so you don't know, really know, that this is serious.  Let me paint a picture for you of what it may look like when your child, or someone else you love, or even you eat something only to experience an anaphylactic reaction.

Picture this:

You are sitting around the dinner table with your family eating a delicious meal of tilapia, a food that your family has eaten on other occasions.  But this time, instead of your son eating it and going about his merry way, his face starts to turn red.  As you sit there watching him, his lips start to swell.  Then his tongue.  Suddenly he is drooling and has tears running down his face, but he can't actually make crying sounds because he is struggling to breathe.  His throat is starting close off.  You fly, not run because that would be too slow, so you FLY to the medicine cabinet and grab your arsenal of epipens, searching for the one with the most hopeful expiration date (cursing yourself for keeping the old expired ones around "just in case").  You fly back to your son, you tell him this may hurt but to stay perfectly still.  You shove a needle into his thigh and count to 15 and pray.  You pray like mad.  Then your husband whisks your only son away to the emergency room because you are too panicked to be trusted behind the wheel.  Your husband has a second epipen grasped in his hand--just in case.  Just in case the effects of the first epipen wear off before they make it to the ER.  Once in the ER, all you can do is wait.  Wait to see if he is going to go into cardiac arrest. Wait to see if he is going to relapse after the medicine wears off.  Wait to see if he is going to live or die.  This time you are lucky.  The doctors send him home with a week's worth of steroids and a new epipen prescription so you can rearm your epipen arsenal.  Now you are back on high alert as you wait to see if your son is going to wake up in the morning.  Will his last prednisone pill wear off in the middle of the night when you are sleeping?  Will he die before he has a chance to tell you he can't breathe?  You and God have never been so close.  But thankfully, this time, your son wakes up and lives to play another day.

This is my son's story.  I am the mom of a son with life-threatening food allergies.  This is the reality of my life:

Every day I am on alert.  Every. Single. Day.  No food can be trusted without a full accounting for its contents.   
Every grocery store visit sees me armed for battle.  Can we eat this food?  Let me read the ingredients to make sure it doesn't contain something that can kill my child. 
Every party and potluck is a parental nightmare of ensuring my child can find food he can eat--and yes, I do allow my child to rush to the front of the line so he can find food that he can eat before it's all gone.  I don't care if it's rude.  Or if you question my parenting skills.  I do what I must to keep my child alive. 
Every meal out requires to waiter to make special trips to the kitchen to question the chef about ingredient lists.   
Every birthday party took on new meaning as my son had to forgo the birthday cake with its "kill me now" eggs.  "Mommy, why can't I be normal like the rest of the kids?"   
Family recipes had to be thrown away or reworked.  I had to learn how to cook and bake in a previously unheard of way.  My cookbook shelf filled up with new options that sounded more like what not to eat than actual recipes--The Egg-Free, Peanut-Free, Dairy-Free, Nut-Free, Fish-Free cookbook.  Delicious.

I just want you to know that when we say that our child can't eat something, or we can't eat something, it's not because we don't like your food.  Or you.  It's that we really can't eat it.  Not even a little taste.  Not even just this once.  Not even if you put just the tiniest little bit of something in your wonderful cookies.  It only takes a minute amount.  One bite.  One time.  One exposure that sends us to the ER fighting for life.

You don't have to "get it."  You don't even have to believe me when I say that my child is allergic to this or that.  Or that I can't eat your seafood dish because the last time I ate salmon, it required benadryl and prednisone and shocked my heart enough to give me an irregular heartbeat for three months.

All I ask is that you honor me or my kid with respect for our situation.  That you say okay without rolling your eyes when I ask you to keep your child and his peanut butter sandwich away from my child.  When I ask what is in your home cooking.  When I request to read the packaging on every unknown food.  When we say no thank you.

And when accidents happen, like last night, that you understand my fear and trepidation.  Because once again we found ourselves at a potluck.  This time it was just desserts.  I knew better, but I didn't think.  I let my son go through the line alone.  I didn't check his plate.  I didn't even think about the peanuts and tree nuts because he outgrew his egg allergy two years ago.  So cookies are fine.  Until my girls informed me that David had a cookie just like mine.  My peanut butter cookie with a hershey's kisses on top.

I nearly died.  Right there on the floor.  My heart broke into a million pieces as my eyes scanned the room.  "Please don't die.  Please don't die." was the chant running through my mind.  Where is David?  Where is David??  WHERE IS DAVID???!!!!  Finally I saw him.  I ran to his side.  Did you eat this cookie?!  "Mom, I took a bite and realized it was peanut butter so I spit it out."  Oh, Lord.  My mind was racing--I have an epipen.  I have a phone to call 9-1-1.  There are two doctors in this room right now if I need them.  The allergist told us that David probably had outgrown his peanut allergy (an as of yet untested miracle if true).  So it's probably okay.  But on my sweet goodness!!!  What if the allergist was WRONG????  What if David is still allergic to peanuts????

He lived.  Not even a hive.  Nothing.  Thank God.

This is my life.  This will probably always be my life.  One day David will grow up and move out and be in charge of his own food allergies and his own life.  But I will never stop praying and reading labels and cooking in such a way that is David-friendly.

If you take only one thing away from this letter, let it be this:  We're not making shit up about food allergies to get attention.  It's real.  And mistakes kill.  "Just this once" can turn into being front page news--I've read about two guys who died in the past 6 weeks.

You don't have to "get it" but please respect it.

Lisa--Mom of a child who is allergic to tree-nuts, fish and mangoes and outgrew his allergies to peanuts, eggs, milk and soy.  Who is allergic to shellfish and fish herself.

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