Hate is the answer.

When Asher gets mad his first reaction is to scream "I hate you," and run off. It doesn't hurt me. It turns his pain inward and that doesn't help anybody. But his little heart can't hear me just yet. He is created of pure passion and steering that in the right direction is my biggest parenting responsibility right now. 

I'm trying to teach Asher that there's no power in hate. At least not in the way he thinks. He spews out "I hate you" thinking "that'll show em and hurt em" but it does more damage to his own heart than anyone's. The dagger stabs inward not outward; we just don't need daggers anyway, when are we going to realize this? 

Now love, however. Love is the most powerful thing on all of the earth. You want change?  Use love not hate. Love will solve problems you didn't know were there, while hate creates them. Love carries such transformative power that catches people off guard because it doesn't always make sense, while hate only serves to cause expected division. 

Hate is its own master and there's no controlling it. It's why you should do yourself a favor and not even deal with it at all. Left alone, hate will destroy itself and show you its true colors. Hate destroys and if it has nothing to attack, it'll turn inward and fizzle out. 

You want to cause more problems and pain than you started with? 

Hate is the answer. 

Daily Bread: Our Story; Asher's story

Hello, thank you for taking the time to read our story. I write...it's what I do/how I process...so this is sure to be long. I am Courtney, mom to Asher who has multiple medical issues. I'm also wife to Isaac (we've been married 11 years), and mom to Zoe (10) and Willow (2). 

Who I'll be talking about in this blog is Asher.  He's 7, loves Star Wars and playing football with the neighbor kids. He's never not been sick. For his first year of life, we didn't know why. Oftentimes, we were at the doctor's office 10+ times within a month. 

Then at 14 months old, he had an anaphylactic reaction the first time he had eggs and after testing, we realized that he had food allergies. Food allergies weren't even on our radar.  We knew no one with food allergies and we felt very alone.  Not only did we have to educate everyone around our family, we had to BECOME educated ourselves.  We made a lot of mistakes, went through a couple of doctors and then last year found the most amazing allergist in all the land.  A support group was started and now I know lots of food allergy parents.  I even feel like a veteran myself!  It doesn't get easier necessarily, but your "normal" changes. I forget that people just go out to eat and grab anything they want off of the shelf at the grocery store. I forget that other people don't watch their children as closely as I have to. Our normal is someone else's crazy. Ha!

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 7 years old):

peanut, tree nut, egg, soy, guar gum, sesame, sunflower, chick pea, green pea, lupin/lupine, lima bean, lentils, quinoa, coconut, poppyseed, flax seed, pumpkin, buckwheat, rice, and penicillin. 

This year, another diagnosis hit us out of nowhere.  Frontal lobe epilepsy. Asher had what we assumed were night terrors for a couple of years.  They came every other month, but this year he started shaking and vomiting with them and wouldn't you know it, they sort of look like a reaction to food, except it happened in his sleep. It took a whole year of investigating and doctors before he had a major seizure with full body shaking. He had an EEG and they called us the next night and told us to keep him home from school the next day and bring him to neurology.  You know if they call with results the NEXT NIGHT (I'm talking past 7pm) that it's not good. 

We're still so early in the diagnosis and awaiting lots of other tests that I don't even know how to talk about this one... Now we're up all hours of the night again monitoring because guess what?  There's something called SUDEP (sudden unexpected death in epilepsy) that can happen to any person who has epilepsy but especially those that have seizures at night.  

All of the tests for epilepsy are made harder because of food allergies. Many of his allergens can be found in pharmaceuticals (ex: to be put to sleep, many docs use propofol but that is egg and soy based, so Asher can't have it). I have to look at the goo they use for the EEG and tell everyone that comes in to touch him to use baby wipes because hand sanitizer doesn't remove food proteins and maybe, who knows, they had a pb&j for lunch. 

It almost feels like no matter what tests we do with him, they always surprise us with bad results.  Right down to tubes in his ears and needing glasses. 

This is our life; this is who we are. Asher doesn't just have all of these food allergies, they are all the most severe cases you can have. We're praying that the epilepsy is mild and he grows out of it.

He wears this around his waist every second he is out of our home and it hangs on a hook on the front door to remind him to put it on.

He takes Keppra for his epilepsy at the same time, every day. I have alarms for am and pm and we canNOT forget or it will induce seizures. 

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. Now, we add the epilepsy diagnosis and we have to retrain everyone on what to look for regarding seizure activity. It's most exhausting when I sit back and think about it, so I just don't. 

And here is where I am: 

I am a mom to a child with food allergies. 

I am a mom to a child with epilepsy. 

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 and epilepsy aren't the only parts of Ash, but they are 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, it's hard to keep friends who want "normal" friendships. I am hyper-aware of everything Willow puts in her mouth because allergies can manifest at any time. 

I am forced to look at Asher so closely at all times that it sometimes leaks over into other parts of my life. I start looking at my own body so closely that I see medical problems where there are none. Some days, the finances that are choking us become the biggest issue in my mind because it's easier to obsess on those rather than my child dying. Isaac takes the brunt of my frustrations because I can't very well yell at food allergies and epilepsy. 

One day, I'll have to loosen my hold on Ash and let him take over. Go to college or the mission field or the working world, trust girls to eat a safe 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 half the time. People expectantly look at me for clarification and I want to scream, "I DON'T KNOW!" but I can't because THEY HAVE TO KNOW if they are taking care of him and I need to appear confident.  I'm pretty sure it has something to do with daily bread, though. I've been pretty focused on that for about two years.  

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. Most days, I can, even if it's 6pm before it settles me (which is still a victory).

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 and Keppra.

Jesus, epi-pens and Keppra

So how do we move on? How do we move at all?

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. But that doesn't mean I don't have days where I mourn our normalcy. Below are the remnants of worshiping Jesus in church and losing it with my Savior. 

I'm sure it was a good thing, but I'm not like a lot of people who like a big cathartic cry. Especially in public. I know that, if anywhere, I should be able to lose it with my family. And I did...but I hated every minute of it.  

While it's good for your kids to see you process and cry, Zoe (10) kept putting her face in front of mine to stare at me.  I wanted to scream "STOP LOOKING AT ME!" but instead I kept reassuring her how good it feels to get it out and how important it is to cry when you need to cry.  Parenting is so hard in these moments when you have to keep teaching but when you want to fall apart and shoo them away. 

Sometimes I want so desperately to quit epilepsy/food allergy life but since I can't I'm trying my hardest to quit living in future epilepsy/food allergy life.  

Finally, let's address the guilt I feel (we all feel at times). I'm filled up with 2 things: guilt about not being the kind of woman who can homeschool her child and confidence that this school, this moment is what is best for him as a child. Those two things war against one another in my head at all times. 

I'm confident that under the right circumstances they can keep him completely safe, but I worry that another food will rise up against him and take us all by surprise. I worry that he'll have a sudden drop seizure in the middle of the day that we don't expect and hit his head. I worry that I put too much responsibility on them and it's taking away from the other children. 

I'm assuming everyone is thinking, "What kind of mother would choose to send her child to school outside of the home when she doesn't work and he has these medical conditions? What kind of mother would put him in someone else's hands? What kind of mother would put that on someone else?" 

What kind of mother?

I'll tell you what kind of mother. A mother who is living one day at a time with enough bread, enough sustenance to get her family through that one day. It's all we have and it's enough, friends. We need to grab it, smell its freshness, thank God for it and KNOW tomorrow will bring however much we need for that day.

Let's lock arms and do this together.  

They run to my arms for comfort

I'm so thankful that my kids are still in the stage where even though it's my voice that corrects them, they immediately run to my arms for comfort. One day, they'll want distance and that'll be hard. 

Even Zoe at 10 comes back to us, not because she's super well adjusted and we're awesome parents, but because that's how God made her. To return to the people who love her enough to correct her to gain comfort from the same voice. 

We are just wired for this. Sometimes we don't understand why kids who get beat -- because they have caregivers who take things out on them --then yearn to return to the arms that beat them. But it's what our instinct is. It makes loving a little person such a responsibility. 

So if we're wired that way who wired us? I think our creator. Our father. The one who corrects and redirects us until it hurts and our gut response is: 

God, no!

God, why?

God, please?!?!

God, it hurts. 

God, thank you. 

God. 

We return to him in question, in anger, in frustration, in pain, in peace. But we always return. To him. 

I will give them a heart to know that I am the LORD, and they shall be my people and I will be their God, for they shall return to me with their whole heart. Jeremiah 24:7

It's ok to rant and rave a little first, but your heart will always lean toward Him.

We won this day!!

This morning was a little intense and we had to ON PURPOSE fight for this day. To not get sucked into the cyclone of anger and getting the last word and letting our circumstances rule our emotions. 

We fought and fought and fought. For the day. We kept having to reset. To be reminded. 

As I was carrying Willow inside from shopping (we just wanted a normal family day out) and I felt her little diaper beneath my arm, and the weight of her on my chest, I thought...we won. 

And we did. We won this day. We fought in His strength and we won. It's ok that it's just one day because one day may as well be a million. 

Jehovah Nissi!!!! 

The Lord is my banner and His banner is victory. 

No one else can water your garden (cheesy metaphor alert)

Dear you, 
I am the vine; you are the branches. If you remain in me and I in you, you will bear much fruit; apart from me you can do nothing.  
Love, Jesus  

(John 15:5) 

Apart from Jesus, we can do nothing... Look at those branches and leaves up there. You pick them, they die. They drop from the branch, they die. No fruit can grow on a branch off of the vine. A dead branch. 

Take note that branches, leaves and fruit on a vine are very close together.  There are places where you can't even tell where one branch begins and another ends.  We're all woven together, yet each connected to the vine separately.  Relationships with one another are so important because we're in such close proximity to one another.  We just have to be careful not to grab someone's hand and cut ourselves off from the vine...

**

Sometimes we rely on friends and spouses and partners and family members to constantly remember us. Constantly make sure we're ok, constantly stay in contact. Constantly affirm. Constantly defend. 

Constantly

If we are a garden, and water is validation/affirmation, then they must water it. Prune it. Adore it. Gardens need constant attention and pruning by a Master gardner who loves the garden. A vine pruner. A Master capable of the purest love. The kind of love that benefits the garden, even if it hurts it. Pruning love. 

Humans aren't always (ever?) capable of that. Humans might leave the water hose on and water one area so much that everything dies. Leaving 2/3 of your garden dry and dead for another reason. The water ratio is a hard one to perfect and then depending on the weather, it must change daily. Leave that to the One fully knowledgable in what gardens need...what YOUR garden needs. 

In Genesis 2:18 it says  "Then the LORD God said, ‘It is not good for the man to be alone, …" That was "in the beginning." I want to highlight this because I'm not trying to say that relationships are irrelevant.  They are very relevant and God put that need within us. So don't isolate yourself. Just go to God first. Go to Him often. Don't consistently look for validation from the world over the word. We need people. We do!!! But not more than we need our Creator. 

Friendships and relationships are amazing. God didn't put the need for community into us for Himself only. So many scriptures mention standing alongside people, carrying their burdens, giving/receiving wise counsel, hearts being knit together in love. Friendships and relationships that glorify God are amazing and benefit everyone. 

Serving with a sister whose shoulder you cried on the night before might be the most beautiful thing in the world. 

So while those relationships are to be cherished, we aren't supposed to yearn for that type of communion with anyone OVER God. When we do, it only causes strife and an ache in our heart where we don't have the right to be hurt. 

People will never validate us in the way 

we need to be validated. 

Here is what I think happens: God puts within each of us a need to communicate with Him, but when we are not in constant communication/praise/worship/prayer with Him, we seek it elsewhere instead of seeking it additionally. It's sort of a natural response if you get what I mean. We just need to direct that natural response onto the correct person. Which is always our Creator. 

When misdirected, not only do we miss out on precious communication with God but we become bitter toward the people in our lives who we've placed in an impossible position. People who we've placed an unfair expectation on that they can never meet. That hurts everyone. 

Our friends are not our gods.

Relationships in our lives are so important to US because God put that need within us to communicate and check-in often with HIM. We need His affirmation, direction and validation. 

The most important friendships in our lives

 point us to HIS face. 

Checking in and communicating is hard-wired into us; we need it and when we don't know where to direct it, sometimes the closest people in our lives become the target. The problem is, they just weren't meant to be that for us, completely. They aren't equipped to handle that and that is where disappointment creeps in.  The roots of discord are fierce and silent. Be aware, be vigilant, guard your hearts against it.  Don't let anything grow in the soil of your soul but what your Heavenly Gardener has planted. 

It applies to Facebook, too. Don't get bitter when no one likes a status that you put a lot of thought into and tried really hard to make affirming. I'm sure it was awesome and who knows who saw it and is taking it with them, but likes mean nothing.  And what happens when you get a lot of likes and then they stop? You start another status and get that little thrill when people like it.  Then what? Another? IT'S NEVER ENOUGH. On Facebook OR with people. They can never affirm you enough. Ever. God is the only One big enough to handle you and your ego (ME and MY ego).  Truth?

Don't let other people be the main source of water (validation, direction) for your garden.  Go to God for that and let everything else be a bonus.  I know this is a cheesy metaphor, but it rings true for me because I struggle with it.

It brings such freedom to let that expectation go and just go to God in communion with Him before (and more often than) anyone else.  Then, guess what? You won't need that affirmation from people and the soil of your relationships will be holy ground.  You bring God and the other person brings God and there are no idols being made of one another.  It's such a freeing way to be in community with other people. 

My wild boy: thoughts after Asher's anaphylactic reaction on 8/20/15

When you're Courtney Hutchinson you tend to have a lot of "biggest fears." One of them came true (again) and I'm going to write about it.  Writing out my feelings is one of the only defenses that I have, and it also acts as a healing.  It doesn't feel like it because it makes me feel, and I'm not good at feeling. I'm writing anyway. This is the story of what happened and as I write this, I'm not sure if/where I'll share it.  I just probably need to get it out right now and I'll worry about the rest later.  

***

I do lunch duty at Asher's school on Mondays and Tuesdays, they don't eat lunch on Wednesdays, and then on Thursdays and Fridays one of his teachers is always on duty.  He's covered by people educated on reactions and epinephrine! 

Mondays lunch duty went perfectly. On Tuesday toward the end of lunch, Asher grabbed me and said, "my tongue hurts."  

Food allergy mom alert!  
Food allergy mom alert! 

Mission: Pretend to be calm while internally 
FREAKING OUT
and taking note of all foods 

in his own lunch box and those around him. 

All looked ok, but in Asher's world that doesn't necessarily mean anything.  He develops allergies like other kids develop colds.  I remembered that the day before he ate at least 5 dum dum suckers and figured they had scraped his tongue and the food was aggravating that.  You just can't assume in food allergy world, though.  I told him I was proud of him for speaking up and telling me (because it's so scary to admit you may be having a reaction when an Auvi-Q is strapped around your waist ready to jab you with a needle) and I told each of his teachers.  I walked him upstairs to his classroom and waited around for a little bit. 

I went to the parking lot and waited in my car.  I told him and his teachers what to do if anything else happened (they already knew, of course but I had to say it) and where I would be; thankfully, nothing else happened.  

Fast forward to Thursday morning at 7:20.  He wanted a package of Star Wars fruit snack gummies before breakfast and I didn't mind if it got him to actually eat breakfast in the morning.  Immediately he said, "my tongue hurts" and it all clicked in my head.  He had those gummies in his lunch on Tuesday.  He ate those gummies just now. I checked the label (Again!!!  We check the label at the store when we buy it and then every time he eats whatever we're checking and sometimes just because I have a feeling. I NEVER ignore gut feelings, whether they are mine, Asher's or anyone's.). Everything on the label was safe. 

It could be subconscious, as in his brain knew he ate them last time his tongue hurt or it could be the real deal.  It could be mild, it could be serious.  I had no idea and so I texted his teachers that I would keep him home for 2-3 hours to monitor and then send him in.  

He rode with us to drop Zoe off and was fine in the car.  As always, he was wearing his epinephrine. We got home at 7:50 and he said his throat felt "thirsty and dry." He drank water and by then, I knew that this was probably going south. Kids use many different words to describe what is happening to their bodies during a reaction and Asher used words to describe things he's felt before outside of a reaction. Pain and thirst. 

It's amazing that with all of the planning in the world, your mind still doesn't want to believe it.  That's why it is so important to have a plan in place, so that you can let the plan take over and shut your brain and your heart off.  Which sounds crazy to shut your brain off, but my brain was telling me, "this may be in your head...just calm down, Courtney." My heart was encouraging those thoughts and trying to soften everything. I'm glad I didn't listen to them. 

His stomach started to hurt and I knew. That was 2 body systems and three different areas of his body.  As I covertly grabbed the epinephrine, he went to the bathroom and had diarrhea; I grabbed it, called mom and said, "I'm using the AQ, get over here." I squatted down and told him, we have to use the Auvi-Q and he screamed loud, "I'M FINE, I PROMISE, DON'T USE IT!" 

He ran from me.  

I had the thing in my hand that would save his life and like the last experience with anaphylaxis, he ran from it and tried to hide. Ah, the human condition. 

I saw his head behind the couch and calmly made him come to me while internally I was screaming EVERY SECOND COUNTS!   Last time, I had to catch him and sit on him to administer the epinephrine, but he's getting older and he knows, which is a relief and makes me feel sad.  

He stood up, shut off his brain, and followed the plan this time.  

Before this had happened I thought, "the next time, I'm going to make him do it, or put his hand over mine so that he gets used to the fact that he'll have to do be responsible for using this one day," but all of that went out the window.  The Auvi-Q is quick and doesn't require a hard swing, so I just placed it on his leg, pushed down and as the epinephrine went in, he didn't even flinch.  He said, "I can feel it going through my body," and he kind of sighed.   

THAT was the first moment I thought, "I did the right thing." I got to anaphylaxis before his throat swelled shut. Even if you aren't sure if your child is reacting and you use epinephrine, it's the right thing.  The only wrong thing is not using it or waiting too long.  Still...a huge sigh came out of me too and I thought, "thank God for this device." 

He immediately got really sleepy as I called 911 and asked for an ambulance with epinephrine.  Mom got there first (she was really close already) and as I elevated Ash's feet, we got some things together for her to take Willow (my 2 year old). We were being OVERLY normal as if Asher wasn't lying on the couch with his feet up.

We lucked out and got the pediatric ambulance and the man who helped us was great.  One minute after we pulled away from our home, I noticed that Asher kept nodding off and his lips were white.  I told the EMT that he needed more epinephrine and before he could act, I just gave him the other Auvi-Q.  He said, "wow you're doing my job for me!"  He then reassured me it was the right thing to do because "the sooner the better." 

Asher perked up a little and again, he didn't react when the needle went in.  I thought he would...

The EMT placed an IV while we drove and I watched Ash the whole time.  He wasn't perking up, he wasn't asking questions like the other times and for the first time ever I thought: 

What if this doesn't work? 

What if he never wakes up? 

What if I did everything right 
and it's still not enough?

We arrived at the hospital as I was drowning in these thoughst and a lot of action happened so I didn't have time to take that last one apart and look at it (thank God).  

They ask a lot of questions when you're in the ER, so I was looking at Asher and answering questions and kind of faking an optimism that I wish that I actually felt.  As if my optimism would perk Asher up and we could focus on just watching him to make sure nothing else happened.  

He was hooked up to a lot of things and aside from his heart rate spiking really high a couple of times his vitals looked great. The ER doctor said it was ok if he fell asleep.  Everything in me rejected that idea.  As he slept, his vitals remained steady. I spooned up behind him, put my hand on his back and felt it rise and fall; I was breathing much faster than he was. 

But, we were both breathing. 

I didn't pray, I just asked everyone else to via text and social media. I tried to remove myself from my head and just be. Be with him. After he fell asleep, his daddy arrived from work and my mom went to the waiting room to help my dad with Willow. The commotion calmed down.  

We waited. 

While waiting, I got the most amazing Facebook message from Courtney Brumfield. I only know her from Facebook; I tried to buy a costume off of her for Willow and we became social media friends.  We like one another's pics and statuses and I think she's pretty cool.  That's the extent of our relationship.  This is what she messaged me: 

Weirdest thing. I had a dream last night that I was somewhere and your family was there too. Asher had a reaction to something and had to be given epi and taken by ambulance. It woke me and made me pray for him. Then I just got on Facebook and saw your post.

God is awesome. I don't even really know your family but I feel like He put me in that dream for a reason. So crazy. Praying for you guys.

That was the little ray of light in all of the darkness. God knows. Of course He does, but He put this scenario into the dream of someone I barely know to say, "I'm with you." God is real, of this I'm sure. 

When Asher woke up 2 hours later-TWO HOURS LATER-he was completely back to normal, it was amazing.  In all of the rush, my mom remembered his iPad and he played and played.  He was so  hungry and all I wanted to do was avoid food. After all, we didn't even know what caused this reaction. How could I look at a label in that moment and feel safe? You don't realize how scared you are of food in the days following a reaction.  Almost nothing they offered could be 100% safe.  Then they found individually packaged crackers that we read and none of his known or suspected allergens were in them. They also brought some orange juice and my hand was shaking so bad when I held the OJ to his lips that it spilled over and choked him.  

Good timing, Courtney!  

He finally wakes up healthy and happy 

and you try to choke him?

**applause** 

From that moment on, he ate a lot of crackers, refused most liquids and we just waited it out.  I waited in such relief, it felt like its own kind of epinephrine running through my body.  His allergist (who is also a friend) called me and we talked it out, trying to nail down what hurt him in those fruit snacks (we suspect sunflower). 

People texted, cracker crumbs were everywhere, and then they said, "ok, you can go home!" I think it was at 1:15pm. 

We packed up our things (I forgot my phone charger in the ER, OF COURSE) and left.  We bought lunch on the way home (Chipotle, his safe place) and as I walked in my door the same thought hit me that hit me when I walked in from bringing him home from the hospital as a newborn. 

Now what? 

The what ended up being pretending that nothing had happened. 

Pretending.

Asher kept saying, "I can feel that stuff in my body, it's weird.  I feel wild inside."  Wild inside sums him up on a good day, people.

But I understood what he meant.  Epinephrine is adrenaline and he had it twice.  Plus, he had a wild morning.  Lots of fear, lots of relief, lots of rest and then lots of excitement. 

My wild boy.

Right now it's the next day.  I woke up this morning on high alert and immediately remembered what had happened.  My insides are shaking, I'm fighting tears every moment and I didn't send Asher to school. I told his teacher and I told Asher that he needed another day to recover, but that's a lie.  His mama needs another day to recover.  To watch him play, to make plans, to decide what to do with him to keep him safe.  Even though he was with me both times he had a reaction this week. 

UPDATE

Asher's allergist called today (one day after the event with the fruit snacks) with results from blood work we had done last week. Perfect timing! 

VERDICT: It was the sunflower oil in the Star Wars fruit snacks.  We didn't know of this allergy and he used to eat it fine.  We suspected, but it's so good to know for sure. 

That's the second seed to show up this summer (sesame being the other one). He had no known ingestion of sesame so we weren't sure what that meant (his skin test was very low and his blood test was significant) but now we know to keep avoiding as we have been. No challenging sesame.  We also added lentils and lima beans this time.  We've added 4 allergies just this summer and I'm pretty bummed about it.  

His new allergy list

peanut

tree nut

egg

soy

sesame seed

sunflower seed

chick pea

green pea

lentils

lima beans
lupin/lupine 

penicillin 

*We avoid finned/shellfish 

pending food challenges next month 

On a good note (besides the fact that he's alive!!!) is that the following came back negative: avocado, olives, green beans, mustard, kidney beans, black beans, and rice. 

But he says rice makes his tongue and tummy feel funny and it was a .64, which isn't really a positive. We'll be cautious and probably avoid that too. 

UPDATE 2

I went to church on Sunday and lost it. 

I'm writing this directly after.  I'm sure it was a good thing,  but I'm not like most people who like a big cathartic cry. Especially in public. I know that, if anywhere, I should be able to lose it with my family. I could have...actually, I did...but I hated every minute of it.  

I needed to once again mourn our "normalcy" and to fear what may come. While it's good for your kids to see you process and cry, Zoe (10) kept putting her face in front of mine to stare at me.  I wanted to scream "STOP LOOKING AT ME!" but instead I kept reassuring her how good it feels to get it out and how important it is to cry when you need to cry.  Parenting is so hard in these moments when you have to keep teaching but when you want to fall apart and shoo them away. 

Now my eyes are swollen and there are bits of tissue stuck in my eyelashes and I want to go to sleep.  But, I have to take care of these three kids and purge our kitchen of new, unsafe foods and then go to the grocery store where there are things staring at me in every aisle that could kill my child. We have to reevaluate all of his safe foods (AGAIN) and look up his safe restaurants (AGAIN) before we can go anywhere. 

I have to send him back to school tomorrow.  I do lunch duty and lunch duty has been terrible. It's been effective, it's been safe, but it just amps up my fear and the days I'm NOT there are actually better than the days I have my eyes on him. For me, seeing the possibilities is worse but I don't have another option. 

I just want so desperately to quit food allergy life but since I can't I'm trying my hardest to quit living in future food allergy life.  

UPDATE 3

Last night (Sunday) my Woven family dropped off a basket on my porch filled with the softest blanket EVER, pumpkin coffee, gift cards to my favorite places, cute Fall kitchen stuff and TONS of love packed in there.  It's been a tough week and they knew I needed loved on extra.  Woven is the women's ministry at my church, but it's SO MUCH MORE than that.  We're family :) 

I needed that love because I'm sending him back to school this morning. I'm filled up with 2 things: guilt about not being the kind of woman who can homeschool her child and confidence that this school, this moment is what is best for him as a child. Those two things war against one another in my head at all times. 

I'm confident that under the right circumstances they can keep him completely safe, but I worry that another food will rise up against him and take us all by surprise.  

I'm assuming everyone is thinking, "What kind of mother would choose to send her child to school outside of the home when she doesn't work and he has this medical condition? What kind of mother would put him in someone else's hands? What kind of mother would put that on someone else?" What kind of mother?

I'm sorry for putting those words in your mouth, it's just the commentary running through my head. 

Closing the computer as I prepare to leave the house and drop him off...

...

The drop off was uneventful and much like a normal day.  Because it is for him. 

I go back in a few hours to monitor lunch while they eat.  Seriously, they have this DOWN at Covenant.  I just open up containers they can't operate and wipe hands after they eat. I watch them play at recess and wander the playground.  It's a good gig...seeing him in his natural habitat haha.

I think that's all I'll write.  I could go on and on, telling you my process daily in the days to come but it doesn't feel purposeful anymore.  I just ask that you pray for my mind, pray for Asher's body, pray for our family.  This is our life and it's one of the hard parts, but I trust you with it. 

I'll leave you with a picture of my brave, strong boy!

This is a beautiful mess, nonetheless...

I talk a lot about how messy my spiritual journey has been and how messy my day to day faith is and how that's not only ok, but awesome!  It started when I started being transparent with God.  You may wonder why I would need to be (I did, too) when He knows every little thing about me, but it's something about the surrender and admittance into Courtney that He loves.  Transparency and obedience have been two words running through my head lately...

I've been hearing a lot of that out of other people, too.  (psst!  even my pastor).  I don't know...it feels so good to be messy and ok with it.  And to encourage messiness in others.  Before my faith was so...clean.  Clean because I wanted it that way.  Proper.   I thought I knew all about it, I knew all the right words to say but I'm sure I wasn't showing the kind of love and forgiveness I was supposed to show.  More like pushing ugly things under the table, hiding away my testimony, meaning well but missing the point of it all.

If you feel you're leading this clean, controlled life and you want/need a little bit of a mess to smack you in the face for authenticity's sake:

ask for it, yo

I'm not saying get messy for the sake of being messy.  Messy is kind of popular right now, so be careful. Actually, what looks like chaos to me may seem pretty solid to you. And what peace looks like to me, may look like madness to you. What I'm trying to say is here is what I know: 

Be transparent with God and He'll blow your mind!  

This is just how He works.  

Fight for mercy, not blood

One Sunday morning Willow wasn't feeling well and Isaac was working. I'm not one to feel bad for missing church when we need to, so Isaac and I had some text church. This is what flowed from His Holy Spirit within me before I even knew it and Isaac encouraged me to share it. Sounds like a couple of weirdos huh?  Well, we are.

Look at those weirdos

We are raising children, ladies and gentlemen

Pray for them 

Alright, let's get back to the serious blog, right?  Here is what I felt within me: 

Something about being Christians makes us fighters. Which is good, but not when it makes us angry fighters as opposed to defenders. 1 Peter 3:15 says, "but in your hearts honor Christ the Lord as holy, always being prepared to make a defense to anyone who asks you for a reason for the hope that is in you; yet do it with gentleness and respect."

But sometimes we fight the wrong things, thinking we're defending a God who doesn't need our valiant defending. When we use DEfense in the wrong way it looks a lot like OFfense. And we're accountable for that. Christians offended at every little thing and then fighting within that offense is wrong. 

Good sense makes one slow to anger, and it is his glory to overlook an offense. 

Proverbs 19:11 

A brother offended is more unyielding than a strong city, and quarreling is like the bars of a castle. 

Proverbs 18:19 

Do not take to heart all the things that people say, lest you hear your servant cursing you. Your heart knows that many times you yourself have cursed others. 

Ecclesiastes 7:21-22

God didn't say "be offended and then fight anyone that comes against you." He is not a God of offense. He wants us to have a reason for what we believe, no matter what anyone else believes.  A reason with gentleness and respect.

Sometimes we take a spiritual battle and try to fight it with earthly weapons (words). 

There is one whose rash words are like sword thrusts, but the tongue of the wise brings healing. Proverbs 12:18 

We fight for things that don't matter, with skewed intentions. We fight so hard so that the Ten Commandments can hang anywhere we want them to, while never locking eyes with widows and orphans. We use scriptures to fight against people instead of using them to penetrate, even to dividing soul and spirit, joints and marrow; to judge the thoughts and attitudes of the heart. 

We sometimes use the sword of scripture because we're out for blood, but blood has already been spilled. On our behalf, not out of our bodies, but out of HIS body. We shouldn't be out to cut people down with it, but to build people up. 

What should we fight for then?

We should fight for justice and mercy and against oppression and slavery. We should promote freedom, hope and love and share Jesus without arrogance, pride or the need to be right. Because we aren't right. He is. THE word himself, Jesus. 

Sometimes Facebook makes me crazy. Often, I want to maniacally shout:

I disagree with you in a way and I agree with you in a way. But that is based on the fact that I'm just relying on what I've been taught to agree and disagree with. BUT NOW I'm trying to find truth. Real Truth. So keep sharing your passive-aggressively angry memes and articles that make light of someone else's pain, while I stay over here studying and opening up and being confused and loving and willing to be wrong and knowing all of that's ok. 

Because I can be wrong and change but I CANNOT live my whole life being wrong and defending that wrong to my death until I get to Jesus and he says "child...where was the love and the defense? You fought against a lot of people and causes but who were you FOR?"

***

So, those were my thoughts on that Sunday morning.  I was wiping snotty noses and praying and texting my husband about Jesus. Here is what I'll add to that today.  Why does it not feel like Christians are bringing hope and love in the midst of the controversies swirling around? 

The scriptures they post are of love, but often reek of the Christian's pride and attitude instead of smelling like Jesus. The world can sniff that out immediately. And so can I. I'm disappointed but I don't have a solution. I don't know. It's confusing. 

What I wish would come as natural to us as proving our point is to love people by seeing them. Right where they are and seeing them through the eyes of Jesus. We need to be moved by compassion for the multitudes, not get angry at them for behaving in a way that is most likely a cry for help. WHAT ARE WE DOING?

Jesus sees them as worried and helpless like sheep without a shepherd. Not mean, rude, egotistical and obnoxious just because their view on life is different; because their histories are different. Let's pray for loving eyes, wisdom and the perspective of Jesus. Then, let's pray about the fact that we are ambassadors for Christ, to a lost and dying world.  How will we present ourselves? 

Above all

Above all, love each other deeply, because love covers over a multitude of sins. Offer hospitality to one another without grumbling. Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms. If anyone speaks, they should do so as one who speaks the very words of God. If anyone serves, they should do so with the strength God provides, so that in all things God may be praised through Jesus Christ. To him be the glory and the power for ever and ever. Amen. 1 Peter 4:8-11

Food allergies and daily bread (bread that doesn't have an ingredient list! Score!)

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.