The Ride: Family & The Epilepsy Theme-Park

With any change in life, the one constant affected is mood. Our feelings- joy and heartache, confidence and uncertainty, optimism and defeat. It’s a rollercoaster. Some experience a Disneyland sort of ride… long and winding with a few jerks and bumps. While others hold on for Magic Mountain… sort of vomit inducing swings. :) Regardless, we’ve all been part of a theme park screenplay. Willingly or unwillingly.

Recently, I’ve dealt with more Magic Mountain than Disneyland. The Happiest Place on Earth was not to be expected anyways considering I’m weaning off a medication my body’s depended on for the last 13 years and starting a new drug. I knew, and my whole family new, from enduring this process many times in my initial years with Epilepsy that it wasn’t going to be easy on anyone. Or pretty. Kind of like “the morning after” with the “walk of shame.” (Mom, Dad, I promise I’ve never had one of those… But I did witness quite a few from my dorm window in college ;) lol) And the morning after I started Keppra was no different.

I was a disaster. Still taking a very high dose of Lamictal and then adding 500mg of Keppra did me in. I was Magic Mountain spinning and post-seizure like tired. Exhausted. I could barely keep my eyes open and my right one was considerably less lively than the left. Oh man, I was a picture of radiant beauty. Hahaha I can chuckle now, since it’s been a week and a half and I can keep my eyes open for most of the day. (Epilepsy drugs have always hit me hard in the sluggishness department.)

That first day though. Unfortunately, it was a Monday and my almost 3 yr. old son attends pre-school on Tuesday/Thursdays. Yaaaaayyyy for me (sarcastically). My husband watched me walk down the hall to join them on the couch for some Wild Kratts or Thomas the Train and knew it would be a stay-at-home day for him. Apparently my attempt at a smile looked pretty comical and he knows me well enough to see I was a train-wreck. He stayed home for a few more cartoons and then I finally persuaded him to go into work. I could see the stress of my health issues and inability to drive from before the holidays creep back into his mind. All of the pressure of work, our livelihood, heavy on those shoulders. I swore I’d camp out on the couch and I could take basic care of us til the afternoon. He uncertain, I insistant- off he went.

It was all downhill from there. I can only remember drifting in and out and instructing my son as to which shelf in the cupboard held the raisins or peanut butter or apple sauce. He was so good and luckily very self-sufficient. In fact, so sufficient that when I looked up at one point from the couch, I realized I was surrounded by almost every toy we own. And a lampshade was sitting on my coffee table. A lampshade. When my husband walked back in 4 or 5 hours later, he looked up, immediately halted, and just said- WHOA. Yeah, that was my Mommy walk of shame moment. He followed it with, “We’re going to need some help over the next couple months.”

He was right but I knew the days of Colossus at Magic Mountain wouldn’t be every day and we would just need to prepare for Free Fall (are those rides even still there?) when it came out of nowhere. I can function now but my emotions are starting to suffer the brunt of this process. The Lamictal/Keppra combo has been inducing small seizures every night, around midnight, and then insomnia until 2, 3, even 4 AM. And no sleeping in. Makes for a rough day. Again, I knew I’d be depressed and this wasn’t going to be Disneyland, but ironically, I hadn’t cried until yesterday.

I got to pick my son up from school- my Mr. Mom hubby usually drops him off and picks him up every day, brings him home then drives all the way back to work. But my sister-in-law drove me this time and I about died when he looked out the classroom window, saw me waiting for him and started screaming “Mom! Mom!” with a huge grin on his face. I saw the teacher try to sit him back down for circle time but he wasn’t having it, so she let him out. He was ecstatic and ran right into my arms. It was heaven for me. You see, I can’t escape the guilt of not being a part of his first year of preschool. I’m the absentee parent. The one nobody knows and doesn’t belong to the Mommy group camped out in the parking lot long after the kiddos are in class. (I have to confess, I always made fun of that before, but… :)) And yesterday I got to be there. Soon all the kids came out and I went into the classroom just to see what was on the walls, what paintings, projects, activities my little man might have up that I hadn’t heard about. It was when Nolan showed me his recent painting that one of his teachers brought over his spare pair of pants. I was crestfallen, my husband had dropped off a pair of extra pants just in case… It’s my fault he’s started wetting his pants again. Sometimes 4 and 5 times a day. He wants my attention and energy and I just don’t have it to give. And he knows “Mommy doesn’t feel well;” poor baby hears it too often lately.

I don’t know if it was the added guilt that broke me but I looked at those pants and crumbled, starting to cry. Right in front of the teacher. Poor lady; probably wasn’t expecting tears. lol I mumbled, “It’s my fault.” Adding awkwardly, “I’m having health issues,” and walked away. I didn’t know what to do. I was embarrassed and ashamed. I’m not oblivious; I knew he’d be along for the roller coaster but it breaks my heart to take him on anything other than Peter Pan right now… but that’s not reality. Not yet.

Simply put, willingly and unwillingly, this is a theme-park ride the three of us will have to navigate together. Hands in the air or gripping the restraints. One morning after, after another…




6 thoughts on “The Ride: Family & The Epilepsy Theme-Park

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  1. My heart goes out to you. The experimentation is definitely a ‘family’ designed experiment for those with epilepsy. Try and trust that it won’t be like this forever. Life continually changes as does your body with the meds. There is no such thing as ‘normal’ but just know that nothing stays the same. As the quote says: “And this too shall pass…”

    Liked by 1 person

  2. We often hear about this “ride” from the perspective of the parents of children with epilepsy, and it is so important that we also hear it from the perspective of the mothers with epilepsy.

    Blessings, Susan


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  3. I can completely relate…especially with not picking your kid up from school. Besides not getting to pick up and drop off, I steered clear from helping in the classroom for fear of having a seizure while I was there and completely embarrassing my kids. Your son is younger than my kids. Mine are 10 and almost 14, but I remember those earlier years well. I know we all have to work through our own “mommy guilt,” but I want you to know that kids are incredibly resilient and adaptable. Everyone has a different “normal.” We do the best we can with what we’re given, and I think our kids understand that. Everyone has something. I wish you the best with your transition. Feel better. I hope I haven’t spoken out of turn.

    Liked by 2 people

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