The Very, Very Bad Day

It was surprisingly warm for the Saturday morning before Thanksgiving, and my husband was doing something in the yard. My two teenaged daughters were in their rooms, primping and chatting. My 11 y/o daughter and my 7 y/o son were wrestling on the family room rug.  I was in the kitchen scrambling eggs for breakfast.  Then my daughter screamed from the next room, and it was THAT kind of scream, the one that sends parents running no matter what.  For some odd reason, I brought the pan of eggs with me, and set it carefully down on the rug.  Then I saw.

My son was convulsing, writhing, his little face contorted, almost unrecognizable. Initially I said to myself, you’ve seen clients have seizures, you can do this.  I must have called 911, but I don’t remember doing it.  But then it went on and on and he turned a hideous shade of bluish purple, and I decided he must be choking.  I held him upside down, still stiff and jerking, and slapped him between the shoulder blades.  Nothing worked.

I gave up, sat down on the rug and held him in my lap.  He wasn’t breathing. The sun was shining, bags of stuffing were in the kitchen waiting for the holiday, the eggs were ready, so how could it happen that I was holding my dead child on my lap?

The EMT’s came and started him breathing again, but he was still out cold.  They placed him on a stretcher, wheeled him out of the house, and down the walk.  My other children had by now hidden themselves in closets.  Some of the neighbors were standing in the street, crying.  I stood coatless in the driveway arguing with the ambulance drivers.  They wanted me to sit in the front cab, miles and miles away from the stretcher. Finally, they relented.  They were volunteers and this was their Saturday too.

In the E.R. cubicle, little by little, my son came back to life. He was bummed that he had missed the sounds of the ambulance sirens, sounding off just for him. It seemed like hundreds of doctors were in and out, asking questions over and over.  At times I had to lie on the floor to avoid passing out. Then one of them ordered a CT scan for then and there.  I screamed, but it had to be.  They let him keep on his Thomas the Tank Engine socks as he was sucked into the tube.

Then we had to sit on a spare gurney in the hallway outside the E.R. nurse’s station to wait for the scan results.  Somehow I could tell when his scan came up on a screen. I watched the pediatric neurologist look at it and start towards me.  It felt like she was a football field away, but sometime later when I was back in the E.R., I saw it was only about 15 feet. This angel doctor gave me the thumbs up before she got to me.  No brain tumor.

Thank goodness for that, but then began an endless series of MRI’s, EEG’s, and seeing more doctors.  They never figured it out exactly, but the new neurologist thought it was occipital lobe epilepsy of childhood.  While there are no guarantees, the “of childhood” part became my lifeline. More seizures followed, even with medication, even at the grocery store.   Dropping him off at school was wrenching.

I was amazed that there is still a stigma attached to epilepsy. Play dates dried up – only one child invited him over – his Mom had M.S. and she got it.  The school didn’t want him to be allowed out to play at recess.  I negotiated with them awhile, and they finally relented when I promised to teach him to stay on the ground.  He could only go on field trips or play soccer if my husband or I was there too.  While epilepsy is no longer considered a sign of demonic possession, it’s definitely not cool.

My son is now a young adult, a systems engineer, and there have been years without seizures.  But that November Saturday rang a bell inside of me that can never be un-rung.

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