epilepsy awareness month

Hello, hello! 

Sorry for the long absence- I've got a baby on the move! When I'm not trailing her to make sure she's not putting something she's found on the ground into her mouth (which is a lot) I'm just trying to crank through the day-to-day stuff around here. I'm anxious to get back to some semi-regular posting- I miss it! But until I can, it'll probably be spotty at best.

I didn't want to let November pass by without mentioning that it's National Epilepsy Awareness Month. While Oliver's neurological condition, Hemimegalencephaly, is extremely rare (only 1 in 1 million are born with it), Epilepsy (which he has as a result of the HME) is much more common: 1 in 26 people will be diagnosed at some point in their lives.

I don't want to bore you with the tedious details of Ollie's medical history, though I have them all written down: from his HME diagnosis at 26 months old to starting seizure meds at 2 1/2 years old, to his first tonic-clonic seizure at 4 years old when we had to call the first ambulance. Every illness, every seizure, every dose change, every midnight call to the neurologist... it's all charted and cataloged in my little notebooks.

But I do want to talk about what it's like to be a parent to a child with epilepsy:
It's scary. Sometimes terrifying. I keep him home from school quite a bit, if I suspect he's getting sick- I don't want to risk him  having a seizure at school or on the playground. I have guilt over that- I feel like I'm keeping him from learning and playing.
I dread going to parties or play dates or museums in the winter, for fear of him catching some bug.
I have full-on panic attacks being away from him at night, so I've only been away from him about 5 (separate, never two in a row) nights. Ever.

Without taking anything away from what Ollie goes through, I'd say that having a child with epilepsy is a family affair: When he needs to be hospitalized, Peyton sometimes gets shuttled from house to house without so much as a goodbye from us. Dylan has spent the night in the PICU with Ollie. I have incredible anxiety associated with Ollie getting sick or having a seizure away from the house. Jon has a lot of pressure at work because he is the one who provides our health insurance, which we desperately need because of all of the doctors and tests an ER visits. 

And then there's Ollie:
Naturally, when he is sick or feeling seizures come on, he is miserable. It takes him a while (a week or two) to get back to his normal self.
But beyond that, he is very much like a normal 6 year old boy. He loves sports! Especially football. But golf and baseball and soccer are up there too. He loves monster trucks and trains and NASCAR. He is learning to read and starting to understand math concepts. While he is a bit behind his peers in school (and this could be because of either the HME or regressions from seizures) he's not that far, and he makes us so proud with his progress! He loves his family (he's a giant love bug), and dogs, and playing with his friends. He loves life! What I'm saying is, he doesn't often let epilepsy hold him back.

I try not to worry too far into the future. We take it pretty much day by day, month by month around here. But, as a mother, it's hard not to worry. It's hard not to think about what it will be like as he gets older. I try to stay positive and focus on advances in the areas of seizure control and management. Ollie is truly special- you can ask anyone who's met him!- and I know his future is so bright.

I don't spend a lot of time wondering "why?" because, to be honest, it doesn't make things better. It doesn't change things. But there is a small part of that "why" that, I don't know, if you turn it around, maybe it could come to good. Ollie has a special place in this world, I'm sure of it. His determination, humor, and general attitude about life inspires our family. Maybe it inspires others too. I don't know.

Last year, the Epilepsy Foundation started a #DareTo campaign, to bring awareness to understanding epilepsy and to "help people living with seizures live to their fullest potential" My hope for my Ollie is that he will #DareTo dream big, because I will do anything I can to help those dreams come true.
And I know a whole bunch of other people who are in too.

** During the month of November, you can wear purple for Epilepsy Awareness- Tag your pics on Instagram:  #IWearPurple & #EpilepsyAwarenessMonth **

Or, if you're the type of person who likes to fill in a few of those "charitable donation"boxes on your tax return, you can always make a donation-however big or small-  at epilepsy.com

You can read more about Ollie's underlying condition, Hememegalencephaly, here.

As always, thanks for your support, kind comments, & for loving our Bugaloo.