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.