Tuesday, March 3, 2015

No guilt. No shame.


I know I'm a rare bird because I don't feel guilt when it comes to my first born son's food allergies.  I know nothing I did or didn't do caused them.  Well, once upon a time I did.  I distinctively remember reading Robyn O'Brien's book 'The UnHealthy Truth' while pregnant with my second (because when you have one child with life-threatening allergies, you try to prevent it in your next child.  I read everything I could).   When I got to the part about peanut allergies being caused by genetically modified soy, I bawled my eyes out.

See...when my son was an infant, I nursed him.  But he was obviously struggling.  He was colicky and miserable.  He cried all the time.  He was rigid when you tried to cradle him in your arms.  He didn't sleep well at all....waking 4-7 times every single night until he was 13-months-old.  He had eczema on his cheeks, arms, chest.  Something wasn't right.  Pediatrician suggested for me to take dairy out of my diet since I was nursing.  I did that.  Nothing changed.  So I thought maybe if I switched him to formula, he would be happier.  I tried normal dairy formula first.  Nothing changed.  In fact, now he was spitting up and swallowing it...indicating maybe he now had silent reflux.  Then, I switched him to soy formula....the cheapest I could find, Target brand.  By 7-months-old, he was completely weaned from nursing and completely on formula.  He was finally showing some improvement in some areas, but not all.  He still didn't sleep.  He still had eczema.

 I ate peanuts and tree nuts every single day while pregnant with him and while I was nursing him.  I thought I was doing the 'healthy thing'.  I didn't know not to.  I didn't know he was allergic.  I didn't know I was causing all his pain and discomfort.  BUT did I CAUSE his allergies?  No.  At least not knowingly.

I have had people try to blame me.  I've had someone close to me say, "You know he has food allergies because you didn't vaccinate him when he was a baby."
HE IS FULLY VACCINATED AND WAS VACCINATED ON SCHEDULE.

 I've had people say to me, "Oh, he has allergies because you ate peanuts while pregnant."  "Oh, he has allergies because you ate peanuts while you were nursing him."  "Oh, he has allergies because you use Wet Ones to sanitize everything."  First of all, I didn't start using Wet Ones UNTIL AFTER he was diagnosed with allergies.  Second of all, we don't sanitize everything....hardly enough.

The thing is...all these people are outsiders.  They don't walk our steps.  They don't live our days.  They don't read what we read and go to our son's doctor's appointments with us.
THEY HAVEN'T SEEN OUR SON'S REACTIONS.  

 I have learned to have thick skin like a rhinoceros.  Everyone has an opinion.  I have learned to not care what other people think or say.  We have had people say that we keep him in a bubble.  That we shelter him.  That we smother him.  Again, they don't live our days.  Our sons are the least sheltered people I know.  (Have you heard?  The RV lifestyle is the furthest thing from being in a bubble!)

Food allergies don't prevent us from living our lives fully or how we want.  Having food allergies simply means we have to think ahead, call ahead, and be prepared at all times.   I'm the person who thinks 16 steps ahead and about all the possible possibilities.
THAT IS MY JOB.  MY RESPONSIBILITY.
It's not called 'smothering'.
It's called 'keeping my son's heart beating.'
I've had someone say in a snarky tone, "But you don't know that he will die from a peanut."
 I DO NOT WANT TO FIND OUT.  Why does that make me a 'crazy and smothering mother'?

Walk out in front of a truck.  It might kill you.  It might not.  But do you really want to find out?!?  NO!  You don't.  Hold this gun to your head.  Pull the trigger.  It might have a bullet in it.  It might not.  But do you want to find out?!  NO...you don't!

So when your son has suffered a severe allergic reaction to peanuts, his allergy testing proves that he is indeed deathly allergic to peanuts, and when his board-certified allergist tells you to 'do everything to keep him away from peanuts', BY GOD I'm going to do it.
Without shame.  Without guilt.

 If we inconvenience you in the process, then get out of our way.  We have some living to do with people who respect us, who have compassion for him, who accept the steps we have to take to ensure his safety, and who will protect our son's life the way it deserves to be protected.  (And I have no doubt that you would do the same if faced with the same).

When your son's allergist looks at you and says, "Whatever you are doing, keep doing it.  It's working."  You listen to your son's allergist!  You don't take 'advice' from people who don't walk in your shoes.

When your son's pediatrician gives you a big hug and says, "You're doing a good job, momma!"     You listen to your son's pediatrician!  You don't listen to the criticism that people spew at you that don't walk in your shoes.

I will keep planning 16 steps ahead.  I will keep reading food labels over and over.  I will keep calling manufacturer's to inquire about the factory that the food was made in.  I will keep calling restaurants to speak with managers and chefs to see if the restaurant is safe.  I will keep researching restaurants menus online.  I will keep turning the truck around when we realize that we have left the Epi-pens at home.  I will keep involved in all the food allergy Facebook pages I'm apart of.  I will keep avoiding places and people who are not safe for my son.  I will keep listening to my son's allergist and pediatrician who know what is best medically for my son.

AND TRUST ME WHEN I SAY...my son knows without a doubt that the world does NOT revolve around him.  He is reminded this every single day when he has to carry life-saving medications with him EVERYWHERE he goes.   Taking precautions to keep his heart beating, does not equal a spoiled child.  Learn the difference.



My son just asked me two days ago, "Mommy, why do I have all these allergies?"  (In addition to peanuts and tree nuts, he is also allergic to all trees, all grasses, all weeds, mold, dust, cats, and dogs).
What do you say to that?  Well, my answer was, "I don't know, babe.  But maybe God thought you were just the right person for all these allergies because He knows you are brave enough and strong enough to handle them."

We have been on this food allergy journey for 9 years now.  It is easier in some ways now (no more toddler at peanut-laden playgroups...can I get an AMEN for that one!? ), but harder sometimes when your son wants with all his heart to not live with the fear of a reaction by simply playing with a new friend.

I could go on.  Oh, could I ever.  Do I know what caused his allergies?  No.  I don't.  Will there ever be a true cure for his allergies?  I don't know.  All I know is that I will protect him and advocate for him all the days of my life.

Without guilt or shame.

And God knew that when He picked me to be his  mom.



3 comments:

  1. Replies
    1. Thanks Laura! Keeping my son alive is something I'm a little passionate about! ;-)

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  2. Way to go Momma!! You are an inspiration to all of us who are trying to be faithful to the calling God has given us as mothers of kids with allergies! Keep up the good work & stay strong in Him! I am with you, friend :) God bless!!!

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