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!
