You Think You Can Do These Things, But You Just Can’t, Nemo!

That time - THAT time - on the clock came, and went. It‘s the anniversary of the day I broke. I’m a year older, but I feel, and I know I look more than 10 years older. I‘ve become forgetful, stressed, forgetful, anxious, forgetful, nervous, apprehensive, forgetful and incredibly frightened. Did I mention forgetful? I lost 10 pounds in two weeks because food tasted unpleasant, eating became a chore and the things that made me laugh no longer sparked joy. I stopped seeing friends, enjoying my hobbies, attending the gym daily (quite often twice a day). I didn’t bake cakes, start new craft projects I knew i’d never finish, have an impulsive closet cleaning day, and I stopped going out-out. My stomach felt like a tempest at sea. The waters were choppy and deeply unsettled. Sleep no longer came easy and when I could fight no longer it would take me for mere minutes at a time before I’d fight it off and force myself awake. I didn‘t want these feelings to go away though. I wanted to live with this apprehension so i‘d be ready if the monster snuck into his brain again. I wanted to punish myself daily because maybe I caused this somehow. I wanted to carry my heavy cross. I wanted to wear my anxiety like a supervillain cape, enveloping me and smothering me so all I could see, hear, smell and feel was THAT. My family had no idea, they didn‘t know I was broken, I hid it well and they obviously saw the fun, creative, super-dooper happy mother I always had been...obviously. That’s what I thought until one day recently, when my son sat beside me with plump tears rolling down his face (he’s 16, we don’t see tears from him too often) and he simply said, “I’m sorry, Mum. It’s my fault you’re sad, and I’m so, so, so, sorry.” Clearly, I had hid nothing. I broke a bit more. I’m weirdly averse to emotions and tears were something that rarely made an appearance on my own face once upon a time, but since THAT day a tear reservoir was built behind my eyes and several times a day they’d spill out and down my face. Within a second the tears had soaked my face and were dripping off onto the pillow I was self-soothing with. On top of everything else he’s also feeling guilt. That hurt me more than I can find words to express.

At that moment I knew I needed help. I knew the storm was worsening and the choppy waters were consuming by brain as well as my abdomen. I thought of the anti-suffocation pillows, the seizure alarm on his wrist, the seizure mat under his mattress, the baby monitors in his room and mine, the bathroom doors with locks removed and the entrance to his bedroom - now without a door. These were the things we were instructed to do by the consultant. Then I thought about the keto filled contents of my refrigerator, the spreadsheets monitoring how much water he’s consumed, the bags of herbs hanging on door handles, at my internet searches history, at the oils, lotions, potions, pills, the water filter, the cupboards bursting with vitamins, and the two expensive cats curled up at the bottom of his bed - I’d read they can detect seizures. I had no answers as to WHY this happened, but I needed to know I was doing everything in my power to stop it happening again! … but it DID happen again. I had absolutely no control over this. None whatsoever.

As for him? He’s living his life. He adapted and adjusted as best he could. He sat exams, started college, went out with friends. He coped as well as could be expected. I’m embarrassed to say it, but I didn’t. I became Marlin The Clownfish. Today is 1 year to the day since the seizure demon smashed its way into my sons brain and our family‘s life. He arranged to go to London with his college friends. Reader, did you hear me? London! The Big Smoke! With friends! No mummy to look after him and watch his every move, keep him hydrated, keep him safe. London - without me! He said, “I just want to be a normal teenage boy…” and those words were right there, ready to pour off my tongue, ready to find their way into his ears as I wanted to declare: YOU THINK YOU CAN DO THESE THINGS BUT YOU JUST CAN’T, GABRIEL! Those same words Marlin shouted to Nemo. Instead I heard myself say, “Great, What time is your train? Who’s going? Remember to take 2 lots of meds. Have an amazing day - and remember to drink!“ I even shocked myself when I heard those words.

He went. He sent Snaps, or whatever they‘re called. He had THE. BEST. DAY. EVER with his mates. He loved the fact he did not let epilspy (or an over protective Cheddar-Cheese-Balls-Crazy mother) stop him. He is such an amazing kid, he truly is.

Today marks 1 year since this all happened. It came in the small hours, and I was frightened for this date. I was Full up from my toes to my head with terror that it would come smashing its way into our lives again at that same date and time. Epilepsy can tell time, you know! We could’ve stayed home and I could’ve watched him all day long, we could’ve sat together watching the clock, waiting for signs or auras, we could’ve been safe on the couch together… or he could’ve gone to London with friends and had an amazing day, eating street food, shopping, seeing sights, and seeing Gordon Ramsey (yes, He saw Gordon Ramsey). The results were the same. Nothing bad happened. Nothing scary. No seizures. The lesson for me here is this: live! Live your life! Life A Life! It might happen, it might not - whatever ‘it’ is! Go do it! Take that class! Join that group! Sign up for Salsa! Make your own Sour-Dough Starter! Go Camping in Rhyl! Watch a Midnight movie…wait, maybe not that one because late nights are a trigger - sigh. I’ve really got to trust my own advice here...Hike that mountain! Eat that slice of cake! Get Married! Get Divorced! You do YOU! Just do ’it’! If ’it‘ is going to happen, it will happen!

My next milestone is a trip oversees. A long Haul flight - RedEye, Being out in the Sunshine, roller-coasters, and water-slides. I really truly hope I can JUST DO It when it comes to these things. I will return and report.

Edit: Well, we did it! HE did it! We flew a long haul flight, we flew red-eye back, we rode rollercoasters which looked more like scribbles drawn by a crayon held by a toddler. We did all of these things - and he was absolutely fine. My heart is full.