Food Allergy Awareness Week (FAAW)

This week has been Food Allergy Awareness Week with over 20 states across the nation having formal proclamations to that effect.  I had planned to have a blog post or two about it, similar to what I have done in the past – share a few statistics, challenge a few people to ‘eat like we do,’ and praise my children for being mature beyond their years.  But statistics only matter if you are the 1 in whatever number, food allergies are about so much more than just eating, and there are days my children act their age.

Its been 4 years and 2 months since we recieved Caden’s diagnosis I’m just not up for the traditional FAAW outreach.  So please, forgive me, if I wax philosophical for a moment and share just exactly what FAAW has been for me this year.

Sunday was Mother’s Day.  I had the opportunity to reflect on motherhood and what it means to me, and inevitably how it isn’t at all what I thought it would be.  I realize most mothers likely carry similar sentiments about life being different than envisioned, but for me almost all the differences between the fairy tale in my childhood dreams and the reality I’m living now is linked to food allergies.  It was an odd way to start the week, thinking not about how food allergies affect the afflicted, but how they affect those around them as well.

Monday dawned with a Facebook link to a teenager who had passed away Sunday due to an allergic reaction.  The third such death in that state in the last year.  The seriousness of food allergies was all to real for me that day, and I couldn’t bring myself to blog.  I ignored the world for a few hours and just treasured my little ones – my three little ones who spend each day at a heightened risk of death, and for whom every social activity is potentially lethal.  We were 20 minutes late to meet a friend at the park due to life complications related to allergies.

Tuesday was brighter.  We had a get together with the support group to look forward to.  I wasn’t able to blog before we left because I was making 4 different meals for the 4 mouths that needed feeding, then spent an hour packing the food and supplies necessary to leave my house for a 3.5 hour period of time.  I meant to take pictures, but I was busy talking with other parents and chasing Eric around with a wet wipe since he was having a mild contact reaction.  Just a runny nose, red watery eyes, and general itchiness.  At least he didn’t break out into full body hives like he has the last few times we’ve been at the park. 

Wednesday was supposed to be my day for the blog.  Caden and Eric had entered the FAAW art contest and I planned to go see their art on display, take pictures of them with it, and post it all on the blog.  We just needed to swing by Caden’s GI doctor on the way.  Getting out the door was crazy hectic as we did breakfast (again, short order cook style), tended to Caden’s tube, did Caden’s therapy, and went through the hour long process of packing up to leave the house for an extended period of time. 

Eric and Kyle got dropped off at my parents house while I took Caden to what was supposed to be a short 20 minute appointment.  An hour later, we left the doctor’s office with orders to go to PCMC in Riverton for a test.  I checked in with my babysitters, grabbed a bite to eat (Caden begged and cried for food), and drug my terrified crying 4 year old to have the test done.  I promised him it would be okay and it would help us help him feel better.  I lied. 

The test showed us nothing useful.  He had an allergic reaction to the solution they gave him as part of the test (only 1 in 500,000 people will have a reaction).  We left the hospital and he spent 3 hours holding as still as possible to minimize his pain, 2 hours screaming and crying in pain, and then 3 hours vomiting every 5 minutes while still screaming in pain.  We desperately called every number we could think of to try and talk with anyone who could help us after hours and finally gave up and took him to the ER.  The ER doctor remembered us.  As he put it, how can you forget a child as unique as Caden?  “Unique” isn’t really a comforting word in the ER, but they were able to get the vomiting and pain under control.

Thursday morning I again spent hours on the phone nailing down the exact cause of the previous day’s allergic reaction.  The ER called to follow up with us; the GI called to go over a next steps sort of plan; the 8 people I left phone messages with after hours finally got around to returning my calls.  We spent the day at home as Caden continued to work through his reaction – you can’t really send a boy who is still in too much pain to walk to play group.  More weeping and wailing and gnashing of teeth from Caden.  Another link on Facebook to another news article about a teenager having a severe allergic reaction in a social setting.  This time the girl lived because she had her epi pen nearby, but it hit a little harder for me because this one was in Ogden.

Friday at 5 am I’m awake and typing a blog post that is much too long.  Caden’s pack beeped and woke everyone up.  Eric is back to sleep, but Kyle is still fussing in his crib.  Even though I'm tired, I have too much on my mind to go back to sleep.  In the 6 hours I was in bed last night, I had to get up to fix the pack 3 times.  I don’t really have time to go back to sleep anyway, because I need to research a medicine Caden’s doctor wants to try.  I’ve to go find a delivery method that doesn’t contain any obvious allergens (milk and corn are the most common offenders) before she calls me back at 9 am to discuss our options. 

Ryan has the day off work.  I’ve been needing to take Eric to the hospital to get his blood drawn for his annual allergy check for a few weeks now, but didn’t want to drag all three kids.  Maybe if Caden is feeling well enough I’ll leave the two extras at home with Ryan and get that crossed off the list today.

Its Food Allergy Awareness Week.  I don’t know about anyone else, but I’m pretty aware of how food allergies affect every single aspect of my life every day.