Epilepsy Wasn’t A Term In Our Vocabulary

Six months ago, epilepsy wasn’t a term we used in our vocabulary. Olivia had had one serious seizure two years ago, but nothing since then….or so we thought.

When you have a child with a complex medical condition, sometimes symptoms get overlooked because you think you are witnessing a symptom already associated with a diagnosed condition. Very disheartening as a parent to realize this wasn’t the case. Olivia’s seizures went unnoticed because we thought the behaviour we were seeing was associated with her severe reflux condition. It wasn’t until her symptoms became predictable, happening at the same time every night or every time she fell asleep, that we began questioning what we were witnessing.

After several EEGs, one sleep deprivation and the other, a video EEG, as an inpatient over 24 hours, Olivia was officially diagnosed as having Epilepsy; a chronic seizure disorder usually associated with a neurological condition. Olivia already having Cerebral Palsy put her at a higher risk of developing Epilepsy.

So…the last six months have been a bit of a blur to say the least. I’ve joined several Epilepsy forums, trying my best to understand what my daughter is feeling prior, during and after the seizure has passed. Olivia is nonverbal so it is impossible for her to communicate what her body is experiencing. My husband and I, along with her medical team, have (and are still) weighing out the best treatment options for her. Olivia doesn’t handle meds well, meaning if there is a 1% chance for a particular side effect to occur, Olivia will be that person it happens too. We have looked into natural forms of treatment, but so far none have had a positive impact on lessening the seizure occurrences. We remain positive however, that the right treatment option will be found for her.

Throughout these past few months, I have learned so much; like for instance, seizures suck, BIG TIME! It never gets easier seeing your child’s body twitch, stiffen or move uncontrollably. I honestly hold my breath every time Olivia has a seizure, silently questioning is it going to last twenty seconds and be over, or is this going to be a big one? Is she in pain? Is she scared? The truth is, I’ll never know. My only indication that she is fine, is the decrease in activity, when her body calms and she peacefully falls asleep. This is the moment I exhale.

Olivia has shown me through all of this that, although the winds of life are vast and strong; trying as they may to knock you down, firmly plant yourself and deny the wind it’s power. Be courageous when everything around you demands that you give up.

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The Struggle Is Real

Although I work hard to focus on “one day at a time”, I find myself searching down the unknown path of what the future will hold. These last few weeks have catapulted my thoughts into a million different directions and feel as though I am on an emotional cusp of breaking. Olivia has been having greater difficulty sitting willingly in her wheelchair. My husband and I have wracked our brains and have covered all of the possibilities related to comfort, support, and posture. We had originally thought her displeasure was caused from pain (and still aren’t entirely certain it’s not), because Cerebral Palsy causes her to have daily pain to some extent; it’s also possible this could be behavioral. But how can we be entirely sure? This is our dilemma.

This is the stuff that really sucks. The stuff, that in most situations, could be cleared up with a conversation or a few poignant questions? Is your seat uncomfortable sweetheart? Are you feeling pain today? Are you frustrated with sitting too often? But when you have a 5 year old nonverbal child who is still developing reliable eye gaze communication skills, and when thoroughly pissed off refuses to use what she knows; instead chooses to scream her hardest and sky rocket into a full on meltdown, everything goes sideways fast.

These are the times that break me down, ugly crying because I know as hard as I try, I will never fully understand my child’s needs. The best I will ever do is a best guess and that is a hard pill to swallow.

As emotionally draining these last few weeks have been, the small wins are what have gotten me through. Today we made it the entire way home from school, without me having to carry Olivia any part of the way. What did this tell me? Well for one, she probably wasn’t experiencing pain (and I highlight “probably” because thats my best guess) and/or she was in a great mood! That was a BIG win! I immediately praised her for being such a “big girl for sitting nicely”. She replied with a smile. Was she choosing to sit? I have no idea, but that was the hand I was going to play. It seemed to work, she felt proud, and I felt good (somewhat relieved) for guessing right.

To me, parenting a child with special needs is finding the steady balance everyday, grasping tightly onto hope and struggling to keep the fears at bay. It’s understanding that we never truly can predict what the future will hold and convince ourselves to stop trying. It’s reminding myself/ourselves that I am/we are doing the best we can.