Faith Health Parenting

In honor of Epilepsy Awareness Month, part of my family’s story

It appears if you want to fundraise these days, you must be able to grow or shave a mustache. Currently, I’m wrapped up in my own mustache fundraising effort as part of Movember, which is growing awareness for testicular cancer and prostate cancer research. (You can donate to or view my Movember page here.)

Recently, I found out about another man using his stache for the greater good. This time, it is about shaving a mustache. David Axelrod (President Obama’s chief political advisor) was a guest on Morning Joe and made a bet with the hosts, Joe Scarborough and Mika Brzezinski, that he would shave off his stache if he were able to raise one million dollars for epilepsy research. The Axelrods have a daughter that has suffered from epilepsy since she was only days old. Susan Axelrod, David’s wife, gave an interview to Parade Magazine about her struggles as parent from the early days of her child’s life up through adulthood. As I read that interview, I was taken back to the horrible day when our own epilepsy trip began 5 years ago.

My son was the picture of health in those early years and we had no idea there was an electrical storm raging in his brain. Occasionally, at night, we would hear him cry and when we checked on him, it seemed that he was simply having night terrors. One frightful day, we found out that it was not a simple case of night terrors.

My boy was napping on the couch and my brother-in-law and I decided to take advantage of the silence and play video games. Suddenly, my son made a noise and sat up. Drool poured from his mouth. His head dropped back to the couch, his eyes twitched, and his tiny body began to shake. I spoke to my son with a calm and reassuring voice (I can’t explain where that came from), but inside I was an emotional wreck. When he began to come out of the seizure, he tried to speak, but a mumbled guttural sound emerged from his throat. I had never heard that noise before and it is one that still haunts me.

The days that followed were intense – they were full of doctor’s visits, tests, needles, flashing lights, and MRIs. My son handled it all like the soldier that he is. I, on the other hand, was not doing so well. I slept on the floor by his bed and my tears soaked the floor. Emotional and physical exhaustion weighed upon me constantly.

Thankfully, my son’s seizure disorder is well-controlled with medication (he hasn’t had a seizure in almost two years).  I’d like to say that it has become easier for me to handle since those early days, but it hasn’t. I hate this journey. I hate that I have to give him medicine twice a day. I hate that every time I hear the slightest noise at night I’m up and running into his room. I hate that every time he has a sleep-over I must discuss with the other parents what to do if he has a seizure. I hate that he isn’t supposed to take baths and he’ll never be able to swim by himself. Many other people that have children with illnesses are better at dealing with the struggles than I am. Hopefully someday I can get to where they are, but right now I’m not yet there.

It seems that whenever we get a handle on one thing, something new pops up. We have had to deal with medication side effects, like blurry vision, something we were never warned could happen and something that caught us completely off-guard. And like many people with a seizure disorder, my son learns differently than most kids.  He’s not stupid (in fact, he has above-average intelligence), but his brain is wired differently. And he’s not unique; almost 50% of those with epilepsy have a related learning disability. Again, no one warned us that this was a possibility.  Like all the challenges he’s faced, my son tackled his learning challenges like a champion.  Over the summer, instead of playing outside like a lot of his friends, we sat indoors for hours practicing his reading and writing together. He also had specialized tutoring twice a week. All his hard work paid off – he was the first Student of the Month for his class this year.

Thanksgiving month also happens to be Epilepsy Awareness Month and I’m thankful for the hope that people like the Axelrods bring to us through their Cure campaign. I’m also thankful for great organizations that are out there, like the Epilepsy Foundation, for not only providing us with quality information, but also helping us feel that we are not alone.  For anyone that suffers or loves someone that suffers with a seizure disorder, I recommend watching the Epilepsy Foundation’s “Now I know” videos.

My son is 8 years old now and every day for the past 5 years I’ve said the prayer, “Lord, please heal my boy.” And for the past 5 years I’ve waited for that to happen. Until there is a cure, I’ll continue to pray for one. I’ll also continue to pray for all those that suffer and those that suffer with them. I’ll always find some peace in that prayer.

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5 comments

  1. I can’t imagine what it must be like to go through this as a parent and to imagine what your son has endured. It’s a powerful story to share and I will keep your boy in my thoughts and prayers.

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  2. Moe and Maranda – we never got the chance to meet you Sarah yet but im prtety sure when we will, we will fall in love with you.. your blessed with cool parents who truly love you and love is all that matters in our lives so on this day Mar and I would like to wish you the happiest birthday and may you keep that smile that mom talks about for ever 🙂

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