Hope

At this time of year, the dawn of a new year, we’re all filled with so much hope; especially this year, after the ****show that was 2020. A new year is a clean slate, a fresh start. Anything seems possible. We perhaps hope for slimmer bodies, healthier bodies, new careers, new partners, to further our education, etc. The possibilities seem endless.

I read an article recently that made me think about hope. It was written by a parent of a child with epilepsy. His child, like mine, failed many different anti-epileptic drugs. He talked about the feeling of hope with the start of each new treatment. Perhaps this will be the one that brings seizure freedom. Maybe, just maybe, this is the drug we’ve been waiting for.

This article resonated with me so much, because we have been there – we’ve been on that nasty hope roller coaster ride many, many times. It takes you from the highest of highs to the lowest of lows and back again, over and over. As a rule, I like rollercoasters, but not this rollercoaster ride. I do not get off and say I want to ride again. Oh no, this rollercoaster ride sucks, quite frankly.

Hope for a child dealing with epilepsy comes in many forms. There is hope in a bottle; a prescription bottle. Hope for us was called by many names including phenobarbital, keppra, topamax, ACTH, sabril, felbamate, depakote, banzal, zonisamide and onfi. I once tried to work the names of the medications into the Rudolph the Red Nose Reindeer song for fun….you know the part about Dasher, Dancer Prancer, and so on, but our number of medications exceeded the number of reindeer. Most of the time these drugs were in combination with others. Currently our cocktail contains 3 medications. Sometimes the drugs had very nasty side effects, like the time depakote raised Owen’s aluminum to unacceptable levels. I didn’t even know that was a thing until it happened to him. Sometimes the drugs were abandoned, but revisited again later on, like the time we revisited our old friends phenobarbital and felbamate.

Sometimes hope was in a surgeon’s hands. We had so much hope when we gave the green light for Owen’s hemispherectomy surgery and when we chose to have a vagus nerve stimulator implanted in Owen’s chest.

Hope even comes in the form of a diet. We had great hope when we started Owen on the Ketogenic diet. We also had great hope when we made the decision for Owen to be fed via a g-tube.

We totally thought we cracked the code and outsmarted Owen’s ever seizing brain when we got him on the g-tube and added onfi to his medication mix. Through proper nutrition, Owen got bigger and stronger and his seizures became practically non-existent for a 1 1/2 to 2 year period of time. Instead of trying new medications all the time, we simply tweaked his medication when he had a breakthrough seizure. That period was like heaven on earth. Unfortunately, it didn’t last.

At one of Owen’s sickest times, I was told by one of his therapist’s not to give up on him. I was mortified that she said that, because I certainly was not doing that. But I was tired and at my wit’s end. I have come to realize that sometimes you have to become more realistic with your expectations to stay sane. You have to adjust what hope means to you. Maybe that sounds like giving up, but I don’t think that’s the case. We no longer hope for seizure freedom for Owen. Not to say we wouldn’t welcome it with open arms if it was a possibility, but we’ve come to the realization that it’s unlikely that will happen after we’ve tried everything the experts have thrown at us. Sometimes what you hope for needs to be revisited. You have to make peace with what is and have a plan B, if you will – Hope Part Deux. For example, if your retirement plan is to win the lottery and you’re getting older and older without that happening, you might want to rethink that plan.

What we hope for now is not complete seizure freedom – again, not that we wouldn’t welcome it if it magically appeared – but something more realistic based on our circumstances. We hope for the following in no particular order: a life with as few seizures as possible; a life with as few medication side effects as possible; and as good a quality of life as we can possibly muster for him. Although he has his share of bad days, of nasty seizure-filled days, I think we have accomplished that. And for that, we must be grateful.

Happy New Year, everyone.