Food allergy and daily bread (this is an older blog)

That picture is from Asher's last skin test. We do one every year (along with blood work) for certain allergies, just to give us points of reference for the coming years and to warn of us new allergies. He was first diagnosed at 14 months with allergies to peanuts, egg and milk. His allergy list is now (at almost 7 years old) peanut, tree nut, egg, soy, sesame, chick pea, green pea and penicillin. For now, we are staying away from all legumes and fish, pending oral food challenges done in the doctor's office. If you're unfamiliar with an oral food challenge and are curious, here is a good resource: What is an oral food challenge? 

Oral food challenges are hopefully long and boring, just waiting for hours.  iPad to the rescue! 

Now to the point of this blog. Do you know what I've come to realize? It's a new awareness of what we're dealing with stemming from recent test results. I think since Asher was diagnosed at 14 months I thought:

1. He will MOST definitely grow out of these allergies. 

2. (This one is hard to admit) Maybe I've made a bigger deal of it than I needed to. I mean I've epi'd three times YES but maybe I jumped the gun. Maybe he wouldn't have reacted as bad and I was just being cautious. Maybe it's even sort of in my head a little. OF COURSE I KNEW THESE THINGS WEREN'T TRUE. I can't stress that enough. I mean there are reactions on record. Skin pricks. Blood tests. His infant medical history is scary terrible. Ambulance rides. ER stays for hours and hours. We've always acted as if each allergy is THE WORST level of allergy in order to protect him because each reaction can be different/worse, but I hoped...

I think that I was trying to protect my heart.  I mean, I know that hope doesn't disappoint; I believe this. But this current round of blood tests really made me face reality. It's almost like he's been newly diagnosed all over again 6 years later. 

Except better because I'm armed with so much experience and information. 

And worse because I'm armed with so much experience and information.  

Now I have a child with food allergies and absolutely no delusions that it's not as bad as we all hoped. This is our life; this is who we are. His component tests for peanut and egg came back as the worst kind to have. He can't even eat eggs baked in things, like many kids with egg allergies.  (Here is a link explaining component test for peanuts if you're interested Peanut Component Testing ) 

He's always carried this faithful friend, his epi-pen bag.  

Today is actually the first day he'll ever start self carrying his epinephrine.  He'll also be wearing it all times at school.  It makes me a little tense because I can't SEE our faithful friend up there.  The public can't see that bag with allergy alert buttons.  I'll probably still carry that, actually. 

Assuming what the results would probably say before we even got them didn't help the cold, hard truth from sucker punching me in the throat. His peanut allergy is in all ways the worst you can have.  At age 7, we are STILL adding allergies to foods when I thought he would be progressively outgrowing them. His reactions are the scariest kind (includes cardiac). His reactions are unpredictable and atypical so we have to tell everyone he comes in contact with, "if he gets sleepy suddenly, use the epi-pen. If you question a reaction USE THE EPI-PEN" and no one fully understands it.  Hell, I DON'T EVEN UNDERSTAND IT.  He has asthma which exacerbates everything. In all ways, it's just the worst combination of issues you can imagine. And here is where I am: 

I am a mom to a child with food allergies. 

I am Asher's mom.

Asher is a child who can eat something one day and the next day it tries to kill him. He also loves Doctor Who, Legos, science and playing outside. Food allergies aren't the only part of Ash, but it's a big part.  

Constant vigilance has made me an anxious mess. I never know the "right" thing to do for him regarding child care, school, medication, who to trust, how to educate others and not wear them out with information, how to assure people they don't need to feel guilty because they have nuts in their homes and so Ash can't visit, how much to expect from his school, how much I should read on the internet. It has affected all relationships I have. Zoe has severe anxiety about it, Asher can't go to friends' houses, Isaac and I have different opinions about some aspects and so it affects our marriage. I am hyper-aware of everything Willow puts in her mouth because allergies can manifest at any time. (She has an oral food challenge this month for peanuts, even though she has tested negative.) 

Regarding peanuts, specifically: My child is allergic to peanuts. It's hitting me hard all of the sudden, it kind of feels like it should have all along. So, among other titles, I am a peanut allergy mom. A food allergy mom. One day, I'll have to loosen my hold on him and let Asher take over. Go to college or the mission field or the working world, trust girls to eat lunch and then kiss him, trust him to not worry about what people think about him and always carry his epi-pens and then USE THEM even if it's embarrassing and ruins plans.  I can't stop myself from getting ahead of myself right now. I used to have seasons like this but I knew I would come out of it and feel better. 

Now, I realize I won't come out of this season. This is our life and it's not a season.  I have to learn to navigate it and it not ruin our lives.  It CANNOT be the only thing we focus on because there is a big huge life out there and I want ALL OF US to live it to the fullest!!!!  At the same time, it's not something that can just be in the back of our minds. It's at the forefront all of the time.  I have to teach everyone around us how to navigate this life when I don't even know how to do it. 

So. Now what?  Now, we all learn a different way and I have no idea what that is.  I'm pretty sure it has something to do with daily bread, though. I've been pretty focused on that for about a year.  

Give us this day, our daily bread. 

This day = Daily bread. We wake up and ask for grace to get through THIS day only.  It's all we have; sun up to sun down. It's all I'm responsible for addressing. It's a freeing way to live, if we can grab onto it.

Here's the thing, I know if God gave me provisions for the whole week at the beginning, I'd gorge myself on all of the bread on the first day and starve the rest of the week. I see His wisdom. I do. So everyday I'll wake up and ask for HIS clarity, HIS wisdom, HIS strength for us all. I can't do it, I know this. It's been taken out of my hands anyway. I don't know which foods will suddenly rise up and wage war on my baby. All I know is that Jesus sustains me, He holds Asher and his mama and we have epi-pens. 

Jesus and epi-pens 

Last week, I came to church shaking and scared because Asher seemed unusually sleepy, hard to wake up and anxious about going to class. All could be normal, summer time woes for my boy and all could be potential reactions to an unknown allergen. 

All the way to church I asked myself, "is he just sleepy or reacting? Do his eyelids look swollen?  From lack of sleep or reaction? He's never nervous to go to class. Did he just stay up too late or is this a sign that something is wrong? ('Sense of doom/sudden anxiety' is how he reacts at the start of anaphylaxis).  Do I push through this or keep him with me? I'd rather him be alive than to assume that I'm overreacting." 

Thoughtsthoughtsthoughtsthoughtsthoughts

He decided after he got to church that he would go to class and as soon as he saw his friend Elijah, he took off running and was "normal." I was ok because my mom was teaching.  She knows the drill as much as anyone can. During worship, I practically begged God to do the very things He's promised to do: sustain us, hold us, get us through whatever this day holds. At the end of worship, I felt ok. It was war though, getting to that place and I felt exhausted and battle shocked. Off I went to teach 3-5th graders, faking it. 

You just have to live anyway and soak up the lessons you learn to use as fuel for next time.  Use those lessons to help one another. None of us are promised tomorrow, I've heard that a million times.  I believe it and I live knowing that as I worry about food killing Asher, it could be falling down the steps or getting hit by a car or at the age of 105, peacefully in his sleep. It can't consume me and I may fight it until the day I die, but I'll go down fighting for my family's joy. 

I don't know why it has suddenly sunk in in a way that it never has before. That's ok, though. It's good for me, I know it.  

I'm starting today, new.  Every day, new.