Epilepsy Foundation Of Eastern Pennsylvania Summer Stroll 2015

First, thank you to everyone that supported us for the Summer Stroll this year. I am not surprised at all that we have such kind and generous friends because of the love and concern you have shown us in this journey. But it was humbling and amazing to see our team total when we checked in. So, again, thank you!

The Summer Stroll was a mass of purple shirts, all people who have been affected by epilepsy. It was a bit surreal…the eventual realization that this is our community because we have been affected by epilepsy, too. And so have you. If you know us, then you know someone with epilepsy. If you don’t know us but are on this website, it’s likely because you know someone who has epilepsy, too.

We are in this together.

Support Us At The Epilepsy Foundation Of Eastern Pennsylvania Summer Stroll

On June 20, 2015 I’ll be helping the Epilepsy Foundation Eastern Pennsylvania continue to support and advocate for the people affected by epilepsy/seizure disorder at the annual Summer Stroll. The fundraising event is a five-mile, non-competitive walk that brings in over 1,500 individuals with epilepsy/seizure disorder and their supporters. In addition to raising awareness about the disorder, the event is integral in generating funds to support the Foundation’s free programs and services. Perhaps most importantly, the Summer Stroll is a testament to all those affected that they are not alone in their struggles.

epilepsy summer stroll

This year, our family will be walking for my son, and we’re asking for donations to help support our team and this great cause.

You can read more about our journey with epilepsy here or click here to donate!

Thank you in advance for your support, and be sure to come back after the event to see pictures!

A Night (Or, At Least, A Few Hours) On The Town

Last night, my wife and I we were able to go on our first proper date (it was her birthday) since we moved to Philadelphia and since our family’s journey with epilepsy began. It was only a few hours on the town, but it came after many months of struggle.

On_the_town_in__philadelphia

One of the challenges that we’ve had has been to find someone to help take care of our son during the day. Up until now, it’s been primarily my wife, with me filling in after work and on the weekends. But my wife has to deal with the brunt of the behavior every day, all day, as well as struggle to find the time and attention to also give to her business, which she can’t do very often because our son needs near constant attention. And so she has bore the brunt of this for our family, sacrificed much of herself and her business, since it started.

As parents, there was no training for how to navigate this new world. We were simply thrust in to it, as was our son. We’re trying to manage his epilepsy and control and direct his behavior, while at the same time simply trying to wrap our head around what is happening and why it is happening, two questions to which we still do not have answers. Like so many families that are going through the same thing, whether it’s for epilepsy or for another condition, the relentless struggle to simply manage the day-to-day is exhausting, and frustrating, and constant. We have both broken many times, only to go to bed, wake up, and do it all over again.

Back when we lived in Colorado, we got breaks, we had jobs that we could focus on, and we went on dates. We had a few different babysitters, some as young as 15 because they only needed to play with our son and put him to bed. But now, a teenager is no more equipped for the situation than we were when we started. We needed someone who could handle the seizures, and keep him safe during an outburst, and that was trained, and capable, and able to handle the stress of working with a “special needs” kid.

While we need someone with a particular set of skills (cue Liam Neeson), our son’s condition didn’t qualify as a medical necessity that required a nurse so, again like many other families, we’re left in the middle…not a medical necessity but more than a parent can handle. If you need assistance, you need to find it yourself and pay for it yourself, too. Both of those obstacles leave many people helpless, in every sense of the word.

We’re very fortunate that we found an amazing caregiver that is patient and that works academically with our son since he hasn’t been able to attend school. But she can only come for a set number of hours a week…enough to help out and give my wife a chance to breathe, but not enough for her to actually catch her breath. We’re grateful the help and for the opportunity to go out for my wife’s birthday, especially since we know that there are other families that are not as lucky.