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.