How raising a medically complex child can affect your marriage

Welcome to one moment out of many in our life. Here is an example of what happens if Asher falls asleep earlier than normal: 1. Scour the house for anything he could have eaten that we didn't know about, while one of us stays by him to watch his breathing patterns. A sign of anaphylaxis for him is sudden lethargy.  2. Bring epi-pens close(r) by.  3. Charge our phones. 4. I put my bra back on to sleep in, just in case an ambulance ride is in our future. 5. Recheck all of the labels of everything he has eaten. 6. Worry about a new food allergy. Make a list of everything he ate just in case we need to investigate later. 7. Watch him for a rapidly rising fever which could bring on a seizure. Actually, any sickness could bring one on. Smell him because dogs can sometimes detect seizure activity and you wonder if it's a smell that dogs can detect.  8. Feel absolutely crazy for that last thought. Google it anyway. 9. Check on him again. Check breathing, feel for a fever, look over his body for hives, watch for shakes, be ready to videotape any seizure activity. 10. Wonder why his ear is so red suddenly.  Google that.    11. Wonder what it would be like to just assume that he played hard and was extra tired or that he is just normal sick...stop your wandering thoughts because as much as you yearn for a normal life, you know that there is no normal. 12. Husband thinks wife is too obsessed.  13. Wife thinks that husband is not as vigilant as he should be.  14. Both feel guilty for different things while they judge the other and fight about it. 15. Stay up all night.   Our 7 year old son Asher has asthma, frontal lobe epilepsy and over 20 anaphylactic food allergies.  Daddy and Asher before an MRI He has also recently been diagnosed with a visual processing disorder that requires therapy.  It took many years to diagnose his epilepsy and new food allergies pop up consistently. The medically unpredictable nature of his issues, the times we've wondered if we could get him back from anaphylaxis (6 times) and the not knowing what was wrong for years has been hard on our marriage. The money it takes to keep Asher healthy, the co-pays, the ER bills, the neurologist, the allergist, the eye therapy that insurance doesn't cover, the MRIs, the EEGs, the cardiologist, the ambulance bills and so on...all worth it but it's just hard. Plus, it's hard in a different way for my husband than it is for me.  Can you imagine what that does to a marriage?  It pulls on it and stretches it until you think, "this is too hard." But you're too tired to do anything about it and so it is sustained until better days. The exhaustion sometimes saves us.  Watching your child struggle to breathe changes you. I swear it changes you at the deepest, molecular level.  It takes what makes you "you" and it shakes it up. As the pieces fall back into place after the event, everything is a little off and it never gets back to where it was.  Then, maybe you get shaken again by a near loss of life or yet ANOTHER diagnosis.  And you never quite fit back together the way you used to be or the way someone wants you.   Imagine two people going through that process again and again and again and again...changing, being shaken, falling back together and sometimes falling apart.  Then being expected to make a marriage work with three kids.  It's hard. Sometimes you just survive it and sometimes it brings you closer than you could ever imagine.   It's unpredictable.  It also does really, really good things to us and for our relationship. Sometimes when I ask, "ok, how do we move on? How do we move at all?" the answer ends up being that we just have to live anyway and soak up the lessons we learn to use as fuel for next time. None of us are promised tomorrow, I've heard that a million times.  I believe it and I live it knowing that as I worry about food or SUDEP (sudden unexpected death in epilepsy) killing Asher...it could be getting hit by a car or at the age of 105, peacefully in his sleep. It can't consume us and I may fight it until the day I die, but I'll go down fighting for my family's joy.

It's wild to pray for healing while simultaneously telling God, "use this. We'll walk this out as long as you need us to, even if it's to death if it's for your glory in our story." God's grace and the lessons He's given us are the lifelong kinds that we could not have gotten any other way and THAT is what sustains us and our marriage. It's what enhances our marriage, against all odds.  We feel stronger.  We would not have willingly chosen this life but man, the lessons are rock solid.  Our marriage gets more solid with each medical disaster which doesn't make sense, right?  But each time we walk out of an impossible day, we walk out strengthened, even if we're crawling.  I look over and see my husband on his knees, crawling right beside me.  Sometimes we walk out of that day and he's carrying me in his arms. Sometimes, I'm dragging his exhausted body out, but either way we're leaving that day together. There is no other option.

It's been a long 7 year journey and the ups and downs have been crazy.  I wrote about marriage once and how it's much like a Willow tree (Willow happens to be my toddler's name) and I think it's true for this medically heavy life, too.  Ever bending; never breaking.  Digging our roots down deep as we let the wind have its way with us, bending with it instead of fighting it.  Some days we feel broken, but we are not.  Asher, Isaac, Courtney, Willow and Zoe (and an extra family member there in the back)

Are you confused about healing? Asher isn't and that's what scares me.

Today Asher has an eye appointment with a new Dr. (Leadingham) to check his vision for his yearly exam and address the problems he's been having in school. We want to make sure we aren't assuming it's epilepsy related when it's visual processing problems or something else. 

For months he's been saying, "my eyes are healed, I don't need glasses." It's the first mention of healing he's ever made on his own and he's adamant.  

We've encouraged him in this, gently reminding him that healing can come in the form of 20/20 vision OR God can USE his glasses as an instrument of healing. With either scenario God is still the same. 

God is still Healer. 

Isaac is better at talking about the miraculous healing of the body while I'm more adept (comfortable) at speaking on how God uses outside people, objects, medicines to sustain us as a means of healing. We both believe in both, but our brains are wired differently and we're constantly learning from one another. And we can speak on the subject as a family, with all different ideas on the matter, while coming together on the most important: 

God IS Healer. 

I'll be honest with you-a deep kind of unspeakable honesty-it's been hard for me. I want to encourage Asher's childlike faith while protecting him from hurt and disappointment. 

Because part of me doesn't fully believe in healing, 

even though I fully believe in healing. 

(I believe; help my unbelief). 

I want him to believe that all things are possible because all things are possible to those who believe, but healing feels tricky sometimes, right? We live in human bodies that fail. That's the temple God gave us. Maybe He gave us a progressively failing body so that we would fully rely on an unfailing God. 

Not seeing healing the way you want to see it isn't an indication that God has failed, it attests to the fact that our souls reside in fleshly shells. That's it. We can exhaust ourselves being mad at God about that, or we can accept it and live each day a little closer to Heaven.  

With Asher today, I'm mainly scared of ruining what comes naturally to him at this age: pure, undefiled by the world faith. 

Childlike faith. 

Not childISH faith. 

I also don't want him to equate physical healing with how much God loves him. To use it as a measuring stick. THERE IS NO MEASURING God's love. It's the most it ever will be and is immeasurable. "Most" isn't even a word you can use regarding God's love because it's a measuring word, but it's all we humans have to try to explain the unexplainable. 

I never want him to believe that pain and suffering 

equate to apathy from God.

I think I'm trying to get to Asher's heart, soften the blow, before he thinks that way but God never asked me to do that. He'll take care of Asher's heart and use his questions to make Himself known. Each expected healing and the results thereof will act as stepping stones toward a stronger faith.   

Today, I'm vulnerably asking you to pray with us that Ash sees God in this appointment however God meets him. To be honest, I wrote the beginning out planning on changing whatever I needed to change AFTER the appointment, to preemptively soften the blow of not receiving the physical healing Asher expects. But...I think I need to write to you openly, risking whatever it feels like I'm risking (I don't even know) because it's my truth and relationship with God isn't always understandable and explainable. That's ok. 

Constant Vigilance and Asher's EPIc Adventures

My 7 year old Asher is a child who can eat something one day and the next day it tries to kill him.  He's never not been sick and we didn't know why for the first year of his life. Then at 14 months old, he had an anaphylactic reaction to 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 us, we had to BECOME educated ourselves.  We've made a lot of mistakes, gone through a couple of doctors and then last year found the most amazing allergist in all the land.  It doesn't get easier, but your "normal" changes. I forget that people 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 the first moments of 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. At age 7, we're still adding food allergies instead of growing out of them.  His allergy list is now: 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.  After watching Ash so closely for 6 years, in 2015 another diagnosis hit us out of nowhere.  Frontal lobe epilepsy. Asher had what we assumed were night terrors for a couple of years until 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.  Now one of us sleeps with him, we have to keep him well because sickness can induce seizures and a baby monitor has once again become a part of our lives. We soon learned about SUDEP (sudden unexpected death in epilepsy) that can happen to any person who has epilepsy but especially those who have seizures at night, like Ash.  So, we watch for his breathing to stop in two different conditions.  The hard part is being aware of what can happen while not obsessing on it every second of our lives.  We want to take this life and LIVE IT, not allow fear to rule us.  He wears epinephrine 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 as we leave. We have administered epinephrine 6 times (the last time Asher did it himself!) and ridden in ambulances I don't know how many times. He takes Keppra for his epilepsy twice every day. I have alarms for am and pm and we cannot forget or it will induce seizures. We are vigilant about medications, we are vigilant about possible reactions, we are vigilant about impending seizures, we are vigilant about what other people around him have eaten, we are vigilant about chest colds, WE.ARE.VIGILANT.  We HAVE to watch him closely, we have no other option. Constant vigilance sometimes makes me an anxious mess, yet sometimes empowers me. 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 in hard and sometimes good ways. Isaac and I have different opinions about some aspects and so it affects our marriage, while bringing us closer together.  It's hard to keep friends who want "normal" friendships, but we have the MOST AMAZING support system/tribe in place.  From family, to friends, to support from his Facebook page and a church who has kept certain foods completely out of the building in order to keep him safe. I am hyper-aware of everything Zoe and Willow put in their mouths because allergies can manifest at any time, but we definitely eat healthier than before.  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 think about my child accidentally ingesting a peanut particle. Isaac takes the brunt of my frustrations because I can't very well yell at food allergies and epilepsy.  I look at Willow and suddenly SEE how yes, she definitely has epilepsy.  OHMYGOSH, how did I miss this?  Other days, I look at those same "symptoms" and think, oh no, she's fine. It just depends on the day and my mood and how much I've let myself google.  While constant vigilance is absolutely required in this life with Asher, sometimes it makes me feel crazy. But I'll take it in order to keep him safe. Life is often like that, just riding the waves. Usually when I write about Asher, I sprinkle equal amounts of positivity because it's good for me, but today...today, I'm just getting it out for the other Mighty warriors out there.   This is my life. Keeping Asher safe, constant vigilance, and my sanity are just a part of it.

Panic is not sustainable

Panic is not sustainable.

I read that line in a blog about food allergies and it has been running through my mind all week.  Often lately, I wake up in a panic for no reason. Do you know what it reminds me of?  The alien thing in the movie Alien. 

yep, I feel like this guy

As my eyes open, I feel it in my chest, wrapping around my throat and preventing me from breathing on my own. The panic seems desperate to grasp onto anything and thrive in my open mind. That anything could be a lot of things…a thought, a problem, a bill that needs paid, a doctor’s appointment coming up, a physical problem that I’ve turned into cancer, offense, anything.  Panic is running around blind until it finds something to attach onto; like a parasite, panic feeds off of a fear I have. Then guess what happens? It gives that fear power that it didn't have before; it builds it up. Panic is so desperately running around because if it doesn't attach to something, it dies.  That's why it's not sustainable. It needs a host. 

When panic finds a worry to attach onto, then I worry and obsess and feel anxious and sick.Which probably tricks me at first into thinking I'm doing something, but that's not true. 

Panic is not sustainable and worry is not productive.

But...I worry anyway. Until my mind fixes it, that is. It could be an actual fix or any way that I can trick my mind into just believing it's fixed. 

The problem is, there aren't always fixes. Sometimes I have to wait situations out and anxiety doesn't give two flips about that. In fact, waiting is anxiety's playground.  Example: On Monday, I may start to worry about how we will pay a bill but that bill can’t even be paid until Friday when Isaac gets paid. My mind won’t let it go. Friday is coming, but it’s a long way away and what if the paycheck doesn’t cover it and and and and…I have to just wait for Friday. Friday becomes my savior. Everything rests on Friday. Life will be fine, if Friday comes and goes and the bill gets paid. Then I can breathe.It gives me a little thrill of fleeting peace, but I want more than that.  I want steadfast peace and security no matter if there is a solution in sight or not. 

I fight all week to trust and be thankful and just…wait. Sometimes panic loses quickly and sometimes it wins, but it never wins for good, that’s what I’ve learned. That’s what I remind myself of over and over. Kicking panic to the curb while IN the unknown, while nothing is resolved is the ultimate win. It happens...not as often as I'd like, but it happens. 

So if panic is like a parasite that feeds off of my fear, then I have to starve it. And that becomes the battle of the day.  Some days I go to sleep exhausted, having fought it all day and some days I kill it early and move on with my life.  Some days it’s  back and forth. My weapons: prayer, scripture, being thankful on purpose, serving others, talking with my husband, asking my friends to take the worry from me and pray for the situation, to lift up my battle worn arms, to act as Aaron and Hur to my Moses.   

I go through seasons like this, usually with many months in between, sometimes it lasts many months. But man, I have learned to fight and each of those battles have taught me things which means that my panic and anxiety serve a purpose. It means more weapons for next time. Do I want to go through it?  NO. But if I’m going to anyway, how amazing is it that the lessons I learn from past attacks make me stronger for the coming ones? 

Romans 5:3-5 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.

Our sufferings (panic) produce endurance and character and hope. And I swear to you, I can FEEL that happening. I can look back and see where I was, and then look ahead and see how much stronger I'll be next time.  That is huge. In fact, that is something I will never ever access outside of trials, so I may as well USE it, right? In fact that scripture up there tells me to rejoice, to celebrate in my sufferings.  I'm working on rejoicing IN them (and I am getting there, even if I just speak it and don't feel it) but for now, I rejoice outside of them. I even thank God for them,which sounds crazy I KNOW. 

James 1:2-4 Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.

Steadfast: unwavering; firmly established.

THAT IS WHAT I'VE ALWAYS WANTED, and if these trials get me there then (while I'm outside of them) I can say BRING EM ON! 

I keep the following in my phone and read it when I need it. I wrote it a few years ago when I didn’t know how I would be sustained within the panic.

** 

I may experience panic. It doesn't mean God is not good or not for me.  While I acknowledge that God can heal me of this, I declare one thing:

Every second I have in life NOT filled with panic, I'll spend glorifying Him, being joyful even when I don't feel it and being His hands and feet. There are very short amounts of time when I feel panic compared to how big life is and I won't let them and thinking about them affect the crazy amount of time I have outside of them. 

While IN panic, I'll continually say that if God is in me, panic cannot be; it's a lie. 

It won't always be like this. Eventually I'll have no panic at all. 

If God is for me, panic CANNOT be against me.

**

Romans 8:18 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

I hope you see that there is victory in this. I feel it and I feel like a victorious warrior, even when I'm in the midst of battle.  Especially when I'm in the midst of battle. A warrior isn't always someone who looks like she's winning the war.  It's someone who gets up and keeps going when she's scared out of her mind. It's someone who cries out, "I NEED HELP!" It's someone who takes a deep breath of fear in and releases a big sigh of surrender out. 

Sometimes I feel like a failure and that's when I can let scriptures remind me that I'm not.  That life is hard and the battles are big and  they're even to be expected. They certainly keep me running back to my Creator. 

My Thorn Named Fear

"though if I should wish to boast, I would not be a fool, for I would be speaking the truth; but I refrain from it, so that no one may think more of me than he sees in me or hears from me. So to keep me from becoming conceited because of the surpassing greatness of the revelations, a thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from becoming conceited.  Three times I pleaded with the Lord about this, that it should leave me.  But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.  For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong."

 - 2 Corinthians 12:6-10

(a poem I wrote about my thorn)

Dear Thorn 

I hate you; I love you

Like a cancer that brings salvation

I try to pluck you out 

But I can't find you

Everywhere; nowhere 

When I look ahead 

You afflict me from behind 

I turn quickly toward the pain 

Wanting to face you

But it's another face I see

The very God I'm begging 

to remove you is standing there 

He allows you 

Permits you 

Uses you 

The very God I'm begging 

to remove you

Wore you 

Knows you

Knew you

Was pierced by you so why are you piercing me?

Can I pray for removal 

AND get to know you, thorn? 

Can it be both ways?

You draw me to Him, what more could I want? 

WHAT MORE COULD I WANT? 

Peace apart from you, thorn,

That's what

You remind me with every beat of my aching heart 

As each beat rushes blood to the spot you've pierced 

That you're still there 

Instant, consistent pain 

Pulsing your presence

Thorn, you remind me of Him

Remind me to look to Him 

Even as I'm begging for relief

You turn me to face Him

Dear Thorn 

I hate you; I love you

My favorite image of God is as a Gardener. 

The garden-the church

The seeds-the people

The Good Gardener shoveling dirt and creating soil and carefully planting vulnerable seeds. Covering them. Piercing the very land He's creating and cultivating. Using the dead, decomposing things to turn dirt into soil. 

Bad into good. 

Death into life. 

Weeding. Wiping sweat from his brow as dirt smudges across His forehead. He looks on his land and whispers, "it is good" while we (the land) scream out in agony, "BUT IT HURTS."  

It is good; but it hurts. 

The Good Gardener walks away for a long time (which is silence to the land) while the sun and rain and seeds do their work. The rain overwhelms, the lightening terrifies, the wind brings fear, the sun is too hot...over and over and over and over. Silence from The Good Gardener while His garden grows in pain. 

WHERE ARE YOU, GARDENER? 

*silence*

After a time, the roots slowly start to emerge from the seed and the seed finally thinks I CAN'T TAKE THIS ANYMORE! I'M GOING TO EXPLODE. And it does. 

The only direction the seed can go to escape the pain is up. The only option the seed has is to grow; to burst through the soil, to dig its way out as its outer shell rips apart, to fight through the pain to get to the sun. The Son. The pain had a purpose and its purpose was to force growth. 

All that to say...a thorn is good imagery for me. I bet the root of all our thorns is pride. My thorn is fear. Not any diagnosis, not lack of money, not a hard marriage, not the future, but the fear of them. A mixture of fear and of a longing for future comfort. 

What I DO know is that our Good Gardener is not only compassionate, he IS compassion. The very spirit of God is referred to as the comforter. So that's what I know. Which tells me he doesn't sit above us shooting lightening bolts of lessons at our lives while he laughs at our ignorance and pain; But He walks beside us holding us steady in the midst of the lessons. Maybe the thorns are just the lessons from the problems we create. The problems we let fester and grow. 

I find myself wanting to unlock the key to removing the thorn. To not needing it to point me to Him. But I don't think that's the point. A phrase I can't get away from is "even in the midst"

even joy

even hope

even contentment 

even happiness 

in the midst of fear and pain

That's ultimate freedom. Where the enemy can't touch you. Where you and the thorn mutually exist in peace. Where you realize that the thorn is not punishment but a means to an end and that end is growth that keeps us running back to our Good Gardener. 

So here I am. A daughter with a thorn. He wore a crown of them, so He gets it. We CAN be thankful for our thorns. God uses something painful to protect, guide and cultivate us.

I'll end with the quote I go back to again and again.

"When you feel like you can't take it anymore, look to Jesus and take it a little more."

John Piper 

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.