Living with Epilepsy

Dillon at 15When my boys were born, I kept the baby monitors on full blast so that I could hear the slightest sound and run in, should they need me. When they were sick, I slept on the floor next to their crib. You might say, I was a zealous new mother. I don’t know who learned how to sleep through the night first, me or my boys. Even today, I still have one ear cocked just in case.

My youngest son has epilepsy. Dillon had his first grand mal seizure while napping in our bed at six-years-old. (If you don’t know what Grand Mal means, it’s where the whole body convulses.) He’d had a migraine that morning and we were resting. The seizure took me by total surprise and I called the paramedics in a panic.

I would try to sleep in our bed after that and would invariably wind up on his bedroom floor listening. I kept this pattern up for about a month, before finally letting go. A year went by before he had another seizure.

On Father’s Day 2000, I could hear Dillon hiccupping in the hallway. He had gotten up to sleep by the vent like he does on so many other nights. I got up to check on him and move him back into his own bed only something wasn’t right. When I sat down next to him to wake him up, I noticed that something was wrong. His eyes were fully dilated and when he saw me he got up with great difficulty. Using the right side of his body only, he began to crawl towards me. I grabbed Dillon and pulled him onto my lap. He had lost all strength on the left side of his body and his speech was  slurred and slow. I’d thought he’d had a stroke and Jeff called 911.

The paramedics arrived pretty quickly, and said that he had indeed had a mild stroke, or TIA as they call it. And off to the hospital we went. CT scans revealed nothing except that, Dillon had not had a stroke, he’d a seizure.

What Dillon was experiencing was the after effects of a nocturnal frontal lobe seizure. His motor skills and muscle strength did return after a while. His memory of our family trip to Disney two weeks prior, did not return. The short-term memory loss was permanent.

Dillon had a dozen more seizures before Epilepsy was diagnosed. Even then it took months to get it under control with the right medications.

Both Dillon and I were afraid to sleep at night. My maternal instincts kept me awake listening for the slightest noise, so that I could run in and be there should he need me. I did not have the strength to sleep. My friends and I prayed continually for healing and for peace.

Every night our family would pray together that Jesus would hold Dillon while he slept and that God would send his angels down to watch over us and keep all of us safe. And we would try to crawl in to His lap for peace and comfort.

One night while we were sitting on our back porch swing rocking and singing together, Dillon asked me how I knew God would send his angels. I didn’t have an answer for him, so I lied. I told him I just do, that it was about faith. But he looked up and said, “No Mommy. How do you KNOW He will?”

What happened to the easy questions, like “Where do babies come from?” That one I had an answer for. So I said a quiet prayer for the right words to say.

It was one of those crystal clear Oklahoma nights where the sky just goes on forever, and I pointed at the stars and asked him what he saw. (My intent was to say if God can hang the heavens then surely he could send a few angels to watch over a child.) Dillon looked at the stars and said something only a child could say,

“EYES!”

“Eyes?” I replied. “I see stars.”

He said “Yeah Mommy, ANGEL EYES!”

With that he ran out to the middle of the yard, threw his head and his arms back and said, “Wow Mommy! Look at all the angels God sent to watch over me!” Then he gave me a quick hug and a kiss and ran back to bed, sleeping soundly for the first time in ages.

I did not run straight to bed and sleep soundly. I fell flat on my face before the God of the universe in my backyard and asked him to see what my son sees.

Elisha saw Chariots, Dillon sees angels and I am learning to see the hand of God at work in ways I never imagined.

 

And Elisha prayed,

“O LORD, open his eyes so he may see.”
Then the LORD opened the servant’s eyes,
and he looked and saw the hills full
of horses and chariots of fire all around Elisha.”

 Dillon’s seizures remained in remission from 2001 to 2004. After finding new medications and treatments, Dillon has now been seizure free since October 5, 2008, has graduated from high school, has his drivers licence and begins college in the fall.

For more information about epilepsy please see The Epilepsy Foundation.

To help fund research and find a cure please see their Research Funding Challenge today.

15 Comments

15 thoughts on “Living with Epilepsy

  1. Pingback: Dillon Made it Six Months Seizure Free « Redemption’s Heart (Psalm 103)

  2. Hello by any chance does your son have adnfle autosominal dominat nocturnal frontal lobe Epilepsy? Sorry to bother you my son is 4 and was diagnosed this year. Not many of us around the world..

  3. Woah! I’m really enjoying the template/theme of this blog. It’s simple, yet effective. A lot of times it’s difficult to get that “perfect balance” between user friendliness and appearance. I must say that you’ve done a awesome job with this. Also, the blog loads very fast for me on Safari. Outstanding Blog!

  4. Hello Deana,

    I am moved by your article. I enjoyed the comparison between Elisha and your son. If you haven’t already, there is a lovely poem hiding there to be written. And an excellent venue would be Wordgathering: A Journal of Disability Poetry (they draw good names and also emerging voices like me). Also, you might consider Silver Blade (www.silverblade.net). Don’t let the fantasy association throw you, we are becoming more and more literary as you will see in the poetry (and the fiction is coming around). I edit poetry for them and I look for work that is speculative poetry written with literary depth (and I am not afraid to print the spiritual side of things as long as the secular reader can connect, too). If you google my name, you’ll see me widely distributed.

    Blessings
    John C. Mannone

    • Thank you John. I appreciate the feedback and the direction. I will definitely look into the links you provided as well as this story. Nice to meet you. Deana

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