Epilepsy.... A Mom's View

Today is National Epilepsy Awareness Day so I thought it was a good day to write about Zachary's journey.

Nine years ago, Zach and I were walking through Old Navy.  Chet was up in Reno reffing a volleyball tournament and the girls were at a birthday party.  Zachary was being a typical three-year-old and not listening to me, running around, hiding behind clothes.  I finally said, “It’s been nice knowing you” and I turned and started to walk away.  When I turned around just seconds later he was lying on the floor, his eyes were glossed over, he was unconscious, and his mouth was foaming.  I will never forget the way I felt in that moment.  I screamed for help and people came from all directions.  One customer happened to be an RN and she knew right away that he was having a seizure.  I remember another person just putting her arms around me and hugging me close telling me he was going to be okay.  I just remember screaming, thinking he was dying.  Someone called 911 and within 10 minutes paramedics were working on him.  He was still unconscious when they arrived and started working on him.  The ambulance took us to the hospital and that day began our 9-year (and counting) journey with Epilepsy. 

Zach had several years where he was able to find freedom from his seizures.  But in the spring of 2016 when he was in fifth grade it all started to change again.  He started staring off into space and doing weird things with his eyes.  We would ask him questions and he wouldn't answer.  One day it just clicked and I remember feeling like my heart dropped out of my chest when I realized that he was having seizures.  He had an EEG done and the doctor said they documented twenty spikes in a two hour period.  His epilepsy was back.  Shortly after, he began getting grand mals again, and since then, we've been working with his doctors trying to find a combination of medications that will make them stop.  It's been two years and we are still trying.  

When people think about epilepsy that image comes to mind of someone falling to the ground shaking uncontrollably.  But it’s so much more than that. It’s the monster that tags along with you where ever you go, that imaginary friend waiting to throw a jolt of lightening through your kid’s brain at the most unexpected moment. Epilepsy means purple ribbons and 5K’s, hospitals and specialists, and medication after failed medication.  It means keeping your phone with you where ever you go, and it means having your heart jump whenever you see the school’s number on your caller ID.  It’s a constant feeling of paranoia and watching your child thinking that any semblance of abnormal behavior could be the precursor to a seizure or evidence of a seizure we may have missed.  It’s a constant second guessing of things like

“is he going to be okay to go to school?”

“can I leave him alone in his room?”

“what if he falls down the stairs?”

“am I overreacting?”

“am I under reacting?”

There are so many days where I just feel frozen.  Am I doing enough? Am I a big enough advocate for him? I don’t want to deal with the missed days of school, the falling behind, the questioning of different treatment types.  There have been days where we have counted as many as 30 to 40 petit mal seizures.  A few months ago, I counted 25 in less than an hour (which resulted in two days in the hospital).  Zach has been on four different medications and none of them have been able to keep his seizures at bay. 

Zachary's leaving this morning on his first mission trip with our church.  I’m not going to lie and say I’m not nervous.  Most of me wishes he was staying home where he could be with me all week.  But I also know that he will be safe.  I know there are nurses going and that he will be with an adult at all times.  The adults he will be with are educated about his condition and he will only be 2 hours away if we need to go get him. I can repeat this over and over in my head but I’m still kind of freaking out.  I want to keep him in a bubble most of the time where I know that if he falls down seizing, I can sit with him and wrap him in my arms until he stops.  Will someone be there to hold him and rub his head when he recovers from the aftermath and the symptoms that follow? 

Nobody can do that as good as me.

BECAUSE I AM HIS MAMA.

We don’t know what the future holds for Zach.  At his age, the chance of “growing out of this” is becoming less and less.  We pray that we will find treatment that works so that he can drive a car and swim in the ocean and do all the other things he will want to do.  We do know that God has the perfect plan for his life and if it includes epilepsy then I know He will give us all the strength to deal with it.  Even though right now it all seems so overwhelming, epilepsy is just a small part of who Zach is.  He has such an amazing heart for God.  He wants to know about everything.  I don’t think his mind ever turns off.  He will ask a question about dinosaurs one second and a minute later he’s wanting to know about global warming.   He invites kids to youth group almost every week and he seeks out kids who are alone.  I tend to baby him.  A lot.  It’s something I’ve been really working on because I know it drives him crazy and I know I need to let him grow up.  But I get scared.  I just want to protect him all the time.  I don’t want anything bad to happen to him.

Please pray for Zach this week while he is on his mission trip.  Please pray for no seizures and please pray that if he does have a seizure that there will be somebody there to love him that way I do.  Someone to wrap their arms around him and rub his forehead.  Please pray for that.