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.