Epilepsy Awareness Month: Excited for EADDL

 

Richard and I are excited! We leave tomorrow for Epilepsy Awareness Day at Disneyland! We started going to this event in 2014 and Robert went with us. I remember being nervous about traveling with Robert but it was easier than I had feared (isn’t that always the way?) and we kept going back!

We couldn’t take him in 2023 because he was in the Skilled Nursing Facility and physically it would have been too tough for us. That was the year I had two cataract surgeries and two Mohs surgeries and I just didn’t have the energy it would take to care for him.

I really missed not bringing him that year. Last year only Other Brother attended the event because of that darn heart attack Richard had! (Although, frankly, I am relieved that if Richard had to have a heart attack he had it in front of an emergency room instead of in Disneyland!) Timing is everything.

This year we are going and we couldn’t be more excited. Our daughter, her husband and our grandson are going and Other Brother and his wife will be there too! Robert will be with us in spirit (and in photo form) so he can join us for our traditional photo in the Tea Cups!

I am grateful for the memories of visiting Disneyland so many times with Robert. He enjoyed every minute of it even though he always, always, always had seizures during the days in the park. Unfortunately, excitement was a reliable seizure trigger for Robert and it is pretty much impossible to keep someone from getting excited about Disneyland!

I wondered if taking him to Disneyland was worth the seizures. I was always considering Robert’s quality of life when I cared for him and even though the seizures were rough on him, I just couldn’t take that joy away from him.

We did our best to manage the excitement. The first year we went, we counted down the days on a chalkboard in his room. Two days before our flight was scheduled to leave, Robert ended up in the emergency room with a cluster of seizures that wouldn’t stop!

We never did the countdown to the trip again. In fact, Richard and I would be super low-key and casually mention we were going on a trip to Disneyland only when we were close to the departure date. We did our best not to show too much excitement when we entered the park but, I admit, that was tough.

Robert never ended up in the hospital again due to all the seizures (at least not around Disneyland time) and I have plenty of photos showing Robert smiling from ear to ear the whole time we were there.

I definitely think it was worth it.

Richard said today that going to Disneyland without Robert will be strange. Yes, it will be different and Robert will be missed but I am so happy we will have family there to enjoy it with us!