Today’s post is part of an ongoing series on epilepsy. Laurie has been a long time Life Rearranged reader, and I knew when I decided to tackle this topic, I had to ask her to share her story. Doose is an especially terrifying type of epilepsy. I hate that her sweet Ben has had to endure so much. I hate that she and her husband have had to endure so much. But God is good. Always. No matter what.
It’s hard to write this story – Ben’s story.
Right now, Ben’s seizures are well controlled. We are living in complete amazement about the transformation that we have observed.
But just a little while ago, life was scary and hard and we couldn’t see the forest for the trees. It’s as if my mind and my heart don’t want to go back to those dark days. But in order to appreciate the good, you have to see the bad. Here is my attempt to share how epilepsy has affected our lives.
Epilepsy is cruel. It comes out of nowhere.
Ben was a completely normal, healthy baby. He developed occasional tonic clonic seizures while a toddler. As the convulsions overtook his body, time seemingly stood still. We helplessly watched him turn blue while holding our own breath. It felt as if we were literally willing him back to life as we watched the clock to see if we needed to administer a rectal rescue medication or call 911.
That was bad – but it wasn’t the worst.
New seizure types emerged. Myoclonic and drop seizures are silent but vicious. These seizures are quick and forceful. There is no warning – it was as if an invisible force pushed him down like a tree falling. They would also cause his body to lose all muscle tone, so he would crumple forwards unable to shield himself. To protect him, he had to wear a medical helmet.
That was bad – but it still wasn’t the worst.
The seizures intensified in frequency, duration, and force. Hospital stays were frequent. Medications failed. The doctors weren’t sure what to do next. We tried the ketogenic diet which was initiated in the hospital. It was one of the hardest things we have ever done. Weighing every single morsel of food to a tenth of a gram was challenging (a paperclip weighs about one gram). Getting Ben to eat large amounts of fat with minimal carbohydrates and protein felt impossible most days.
That was bad – but it still wasn’t the worst.
The worst was when that treatment – our last hope – failed too. The worst was taking him to the hospital again on Christmas Day because the seizures were relentless and then being released with little improvement. The worst was watching my now four year old stop talking and having to help him walk. It was watching the seizures become innumerable and steal him away slowly.
Not knowing what else to do, we tried one more medication – one that came with serious possible side effects. The other meds did too, but this one, required signatures after every paragraph on the waiver form. This medication mentioned possible death and had less than a 5% chance for success because he had already failed 8 other medications.
The worst part of epilepsy was realizing that we could lose him while trying to save him. In some ways it felt like we were already losing him because of regression and medication side effects. In those extremely dark days, God’s presence was with us. I clung to this scripture:
“So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There’s far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can’t see now will last forever.” 2 Corinthians 4:16-18 MSG
It felt like the entire world was falling apart on us. But His grace was making new life and breathing hope into our weariness.
And now – we are a living testimony to the hope that can be found despite catastrophic diagnoses like Myoclonic Astatic Epilepsy of Doose. Remember that less than 5% chance of success? Well, it turned out to be a 100% chance for us.
Ben no longer takes 19 pills a day. He takes 2.
He no longer sleeps with us because of nocturnal tonic clonic seizures.
He no longer wears a helmet.
He hasn’t had a seizure for over 21 months.
Our focus now is on regaining what epilepsy tried to steal in the areas of academics and development.
Epilepsy is a wide spectrum of disorders – each with its own complications.
Epilepsy is more than just seizures. It is helmets, and medications, and unwanted side effects, and accompanied delays and struggles. It can be catastrophic and I believe that it can be cured.
We are not giving up.
Thank you Jeannett for letting me share Ben’s story. My prayer is that others would be encouraged to “not give up”, but to remain hopeful, to discover His grace and to rest in His faithfulness.
Thank you so much Laurie for sharing your story and helping all of us learn more about this condition that affects 1 in 26 Americans.
If you’d like to help support epilepsy awareness, you can make a tax-deductible donation to our 5K team page here. Or you can purchase printables here with proceeds benefitting our team page as well (T-shirts and bands are no longer available).