Sunday, November 12, 2017

Epilepsy Awareness Day at Disneyland

I am already thinking about Epilepsy Awareness Day at Disneyland 2018.  That’s what this event does to you – it inspires, educates, supports and leaves you feeling all gooey inside!

And that’s not just from the Mickey Mouse Rice Krispy chocolatey goodness treat that I had to have on Day 1.

This was the fourth year Richard and I took Robert to EADDL and the event gets better each year. Friends and family attend with us which makes my heart oh so happy! We meet new people who are affected by epilepsy in some way.  Families travel from England, Australia, Florida – you name it and I’ll bet that state or country was represented. (If it wasn’t this year, it most likely will be in the future.)

I know it is not always easy for families to travel to such an event but there was not one person complaining. It is not easy to travel with someone who is disabled and may need to go through an extra security screening at the airport. Or someone who might have a seizure (or be worried about having one) on the plane or at the event. Or someone who needs to organize a week’s worth of medication.

I worry that I won’t bring enough briefs or bed pads for Robert.  I worry that all the excitement will cause him to have seizure clusters (the last few years the event did cause seizure clusters but this year he only had a few sporadic, minor seizures).  I worry that it will rain (and we all know Robert melts in the rain). 

I worry that I am not getting the absolute best deal on the flight or the hotel. (I practically have a panic attack when making travel reservations because I am so fearful I am going to pay more than I should!)

My worries do not stop me from going but they do prod me to be very, very organized and prepared for any (and I mean any) contingency. 

What if Robert ends up in the hospital and we have to stay a few extra days? No problem: I bring a few extra days’ of medications (and have the nearest pharmacy and hospital listed on my itinerary).  What if Robert leaks through his brief at night? No problem: I bring enough pads to spread under and on top of him (thankfully, he’s a good sport about it).  What if pneumonia strikes again? No problem: I packed his at-home supply of antibiotics and his inhaler (and have his pulmonologist on my phone’s “favorites” list).

That’s what these families do: prepare, prepare and prepare and then take a leap of faith it will all work out.

And it does.

These families inspire me so much! I met many moms and dads with young kids with epilepsy; a grandmother traveling with her grandkids who have epilepsy; a single mom with her young adult son who has epilepsy; parents with adult children with epilepsy; friends attending with a friend who has epilepsy. 

We get to meet other families who have taken this leap of faith to attend and it leaves such a smile on our hearts that we cannot wait until next year.

I even met one young lady who was at California Adventure by herself who had epilepsy. She hadn’t heard about Epilepsy Awareness Day at Disneyland but tapped me on the arm, pointing at my t-shirt and said, “I should be a part of your group. I have . . .”  Epilepsy?  “Yes! I have epilepsy too.”

We stopped to talk with her for a few minutes and she said she had been seizure free since 7th grade and was now in college. She was delightful and sweet and I told her about the event and suggested she attend next year. I introduced her to Robert and she told me about the medication she was on that allowed her to remain seizure-free. She suggested I talk to Robert’s doctor about it and I thanked her for the information.

If we hadn’t been wearing our Epilepsy Awareness Day shirts she may never have known how many people were just like her.  Of course, I worried about her being at the park alone because she had an innocence about her that I was afraid people may take advantage of.

I recognized that innocence because Robert has it too.

Our encounter was brief but she left an impression. 

That’s what this event does too.

This event brings people together and gets rid of the stigma that epilepsy still has associated with it.

So dust off your worries, start your planning and preparing and join us next year at the annual Epilepsy Awareness Day at Disneyland and Educational Expo. 

Mark your calendars for November 5, 6 and 7, 2018!!

Hope to see you there!

I better start my search for the best travel deals – it’s never too early!