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)