Combat

A 2009 study found that mothers of children with autism experience stress levels comparable to combat soldiers.  Henry had not been diagnosed as autistic at this point in our story, but the years following Henry’s first seizure were nothing short of warfare. Every day, all day, our family rallied and fought. Henry developed seizures that I didn’t know existed.  Each development was a fresh new horror…myoclonic, atonic, absence, atypical absence, grand mals, focal, and involuntary activity that wasn’t even defined.  At one point, he had a low-grade fever, and his entire face started to convulse.  The seizures were so frequent and brutal that we couldn’t identify their triggers.  I held Henry for hours on end, trying to protect him, but he was literally having hundreds of seizures a day so if I went to the restroom, or got him milk, or tried to dress him he would have atonic seizures and crash to the floor. We bought the thickest padding and carpet available. We bought special helmets that did no good because he was falling face first and helmets don’t protect your face.  The only place he was safe was in our arms, and that’s pretty much where he stayed for two years.   Our warrior chipped two teeth, had swollen welts on his head, bruises, bloody noses, and bloody lips.  Henry was ragged and war torn but if he fell 95 times, he would get back up 96 times.

His grand mal seizures lasted 10-15 minutes and did not respond to rescue medication so we were raced to the ER by ambulances repeatedly.   Our life was a cycle of tweaking meds, tracking seizures, and emergency runs to the hospital. “Tweaking meds.”  Those two words roll off the tongue so easily and sound like such a simple adjustment to our daily routine.  I can assure you; this is not the case.  Most anticonvulsants are not for infants or toddlers, so the side effects were rough.  Henry had allergic reactions and rashes from two of the medicines.  A third medication made him aggressive.  Believe it or not a medicated one year old can be aggressive.  A fourth medicine kept him awake and irritable.  He would sleep for 3 hours, then wake up and scream for 3 hours.  This went on 24 hours a day for two months.  The side effect of a fifth medicine was anorexia.  He refused most food and stopped gaining weight for 12 months. We transformed from parents who were afraid to give him infant Tylenol to parents of a child who had failed seven anticonvulsants.

The neurology department worked in teams at his hospital. Henry had teams of the brightest minds caring for him.  The doctors videoed his EEGs, completed bloodwork, and ran genetic tests. On one of our many ER stays, a brilliant doctor sat down and asked, “What do you think we should do mom?  Should we increase his meds or just monitor him?” He looked absolutely exhausted. It was kind that he asked if I had a preference on how to move forward, but I wanted him to say, “Here’s our next step. I got this!” I think he felt as defeated and powerless as I did.  They could not find a cause for epilepsy this severe and, as a result, Henry’s diagnosis was idiopathic epilepsy. I asked, “What’s idiopathic epilepsy?”  The neurologist explained it was epilepsy with no known cause.  Basically, idiopathic epilepsy is a synonym for “we have no idea” epilepsy.   It’s maddeningly ineffective to fight an enemy you don’t know a thing about.  Unfortunately, our family’s only option was to square up and spend our days fighting an elusive enemy with no end in sight.

When I think about the 2009 study, I can’t think of a more accurate description of a special needs mom. A soldier. She fights for something that is bigger than herself. Of course she would die for her child but, more importantly, she lives for that child. She sets aside her life, puts on her riot gear, and lives for that child all day everyday.  

If you’re reading this and you’re a special needs parent, know that you’re a warrior. Some of us are hyper vigilant and carry fears on behalf of a child who doesn’t recognize danger. Some of us spend our days preventing meltdowns and the destruction of our drywall. Many of us are waging war with insurance companies, access to services, and waiting lists. Those of us with the most profoundly delayed children are bathing, diapering, feeding, administering medication, and monitoring them at all hours. The beauty in your battle is that it’s driven by your love. I salute you.

A VERSE THAT ENCOURAGES ME IN THE BATTLE:

As I was writing this post, I felt sick reliving the early days of Henry’s medical struggles. I prayed, and the verse below came to mind. Jesus promised that we would have troubles. Nothing in the world can undo this.  BUT He also promised that He has overcome this world.  Nothing in the world can undo this either, and that brings me peace. 

Jesus spoke those words to His disciples as Judas was betraying Him. He was encouraging His best friends as He was preparing to be humiliated, brutalized, and executed. In the face of all this, He approached the cross as a conqueror!  His sacrifice was driven by His love for us, His kids. I am so blessed to call Him Father.