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.
It’s time.
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).
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Jeanett,
Thank you so much for doing a series on Epilepsy. My eight year old son has Epilepsy and his seizures are not yet controlled. It’s so hard to deal with this monster alone. I have plenty of family and friends who are supportive but can never fully understand or relate to my day to day life. I hate to read about other families suffering. But it does help me cope and find comfort in knowing we are not alone.
As hard as it was to read Ben’s story, it also filled me with hope. My daughter and Ben share a similar journey, albeit a different diagnosis. We too have travelled the path that is littered with failed meds, helmets, Ketogenic diet, and EEGs. We have been seizure free since January 21, 2013 due to my daughter undergoing a Corpus Callosotomy. It feels like a different life that we live now.
Thanks for the series.
Gillian´s last blog post ..Lucky Number 7
Jeanett,
Thank you for sharing your story. I am a mother of 2 girls. My oldest is a 15 yr old that had battled seizures her whole life. As you said, Epilepsy is more than seizures. It is side effects, medications, falling behind in academics and an unfair childhood. For my daughter, it was even therapy due to feeling bullied and isolated from other children. Often I hear her compare her elementary school days to her younger sister’s and say that she wishes it would have been the same for her. It absolutely breaks my heart. But, I am happy to report that after overcoming all of those obstacles, she has been seizure free for 2 years now,. What was once a scrawny, frail girl that only dreamed of dancing but didn’t have the energy is now a talented dancer and beautiful thriving teenager with big dreams for college and might I add an honor student. At one point, she missed so much school that they were only passing her to move her along to the next grade. All her struggles only made her stronger and more determined.
The irony of all this? This past year, at the age of 39, I suffered my first seizure while driving home from work. No warning, no symptoms, no history. Also, no memory of the incident. I woke up on my couch 6 hours later and had no memory at all of what happened. I didn’t have a scratch on me. I have been Epileptic ever since and on medication.
I now have a little taste of what my daughter’s life was like all those years. Although. my condition is controllable and the episodes are less, it is still scary. My life has been changed. The side effects from medicine suck.
My daughter is now telling how strong I am. Who knew that the tables would be turned one day?
This illness is a monster and it strikes any one at any age. I thought when my daughter overcame her seizures we would have a normal life again. I almost lost my life bc of the same illness and now here I am on house arrest on days I don’t feel well when I should be having fun running around with my girls shopping and doing the cool things we were doing before.
Since God decided not to take me away from them before my 40th birthday, I am holding a 5k in my city in honor of my daughter and myself and giving all the proceeds to the Epilepsy Foundation. There will be a cure for this illness one day. It can’t just decide to come in and destroy lives when it feels like it. No way, that is unacceptable to me.
Thank you for letting me share my story.
I’m very happy to hear your little boy defied the statistics and is doing well. I always say that the statistics are high but what’s higher is the number of people fighting for a cure. We will win this battle together. Keep fighting.
God is always working even when we feel there is no hope.
I am a mother of a little girl with an SCN1A mutation called Dravet Syndrome. She had her first seizure on the day of her 4 month vaccines and continues to have them now, 11 months later. It is a long tough road but its important to tell your story to educate others about the many types of epilepsy. Best wishes to your little boy.
I just wanted to say thank you for working so hard to create this blog. It has become so many things to so many people. You have helped, given advice, shared information on SO MANY important things, including your family and it’s trials and tribulations. It reminds people like me that while children are all absolute blessings, they aren’t always born physically, mentally or socially perfect. It’s so easy for people like me to be reminded that my problems aren’t problems and fortunately God handed them to me and not my children. For those of you who are raising special needs children, my heart goes out to you, not for pity, but because I know that each and every one of you would trade places with your child in a heartbeat. I can’t even for one second imagine a day in the life of any of you, but I will say this; if God had handed me a child with any of these problems, I would be ever so grateful to be able to go to a blog like this and feel comforted, feel like someone gets it, feel like I can find ideas that others are trying. Unbelievable Jeannett!!
Remember when you were frantic about going back to work with Henry? Guess what? Planning was not your calling, this was.
Wonderful web site. Plenty of helpful info here. I am sending it to several friends ans also sharing in delicious. And of course, thank you on your sweat!