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 undiagnosed for about a year. We began to notice a pattern in her sleeping behaviour; she would awake the same time every night with episodes of vomiting. We originally took this for reflux. Then we began seeing behaviours when Olivia would drift off to sleep. These behaviours often appeared as twitching, arching, repetitive sounds, periods of semi-consciousness, and crying.

After several EEGs, one sleep deprivation and a video EEG, 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, so finding the right medication to control her seizures was essential. I am happy to say we have!

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. The dangers they present are a terrifying reality and an important reason as to why awareness and research are so important in the field of Epilepsy.

Epilepsy is now part of our life. Olivia’s seizures are now controlled, but we understand eventhough controlled, she can still have the occasional incident especially when she’s sick. So today, if you see someone wearing a purple ribbon, know it’s in support of Epilepsy Awareness.

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.