A little bit of light
If you all are anything like me, you could use a little pick me up right about now. My gift to you this week is a sweet story that comes with the reminder that for some godforsaken reason we have to have darkness before light.
When Miguel and I were asked to perform our “Evening with Kelly & Miguel” show in Orlando, we knew we wanted to sneak in a visit to the theme parks with the kids while we were there. We didn’t have a ton of time, but we made the most of it. One day at Universal and one day at Disney’s Hollywood Studios.
I’d chosen Hollywood Studios because it had rides that each person in the family would enjoy. Even though I knew it would test the healing progress I’d made so far.
Would it look the same? Would I remember the spot?
In 2018 we did a big week-long Disney trip with Jackson and Adelaide. Jackson was nearly six at the time and loved every minute. Two and half year-old Adelaide, on the other hand, struggled. Between the heat and overstimulation, the days were long. We did our best to take breaks and kept as close to her home routine as possible. Disney wasn’t all bad for Adelaide, she loved being outside and going for walks. But most of all she loved meeting the characters. Whether it was their larger-than-life features or the sweet way they spoke to her she seemed to perk up at each meet and greet. Unfortunately, she was also in a stretch of some of the worst seizures of her life.
Why would I plan a trip to Disney World while my daughter was experiencing horrible seizures you ask? Well, at some point when you have a family member with a chronic illness you have to decide when and how to live again. But also, by this time, seizures were our normal. We had learned how to live alongside them like a roommate you despise but can’t kick out.
Every morning, like clockwork, Adelaide experienced a ten- to twenty-minute-long seizure cluster. The day we were scheduled to visit Hollywood Studios I crossed my fingers the seizure would occur before the reservations I had made for the Disney Jr. character breakfast – the part of the day I knew she would most enjoy.
Thankfully, just after we entered the park, it began. And yes, I know how odd it must sound to be grateful for CONVENIENTLY timed seizures – but welcome to epilepsy. Holding her in my arms I moved to the side of Hollywood Boulevard just outside a Mickey themed store. While my family wandered around inside waiting for the seizure to end, I sang to Adelaide so she would know I was with her when she came to and cried in between the clusters.
The irony of this daily nightmare happening at the gates of the happiest place on earth was not lost on me. Perhaps it is why the memory of this seizure out of thousands has haunted me for so long.
And now here I was, seven years later walking down the same boulevard and passing by the same store. As far as I could tell, nothing had changed. I was surprised by the relief I felt at recognizing the exact spot. Validated even. My memory was real.
“Do you remember when Adelaide had a seizure right there?” I asked Miguel. I needed someone else to share this moment with me.
“I don’t remember that one, but I do remember holding her on a different day while she had a seizure on the park shuttle.”
“Yeah…” I took a deep breath and continued walking past the store.
I could let the despair of the memory overwhelm me or I could focus on enjoying the moment I was in. Perhaps a credit to my processing and healing, I was able to choose the latter.
After going on a few rides, Anessa asked to meet Mickey and Minnie Mouse. Uninterested in photographs and autographs the boys split off in search of another roller coaster.
“Are you sure this is the line to meet Mickey and Minnie?” Anessa asked.
“I’m positive.”
“But I can’t see them.”
“That’s because they are inside the building waiting to say hi to you.”
This seemed to satisfy Anessa’s curiosity for the moment and she returned to playing with the line dividers. As the line moved along we chatted about what Minnie and Mickey would be wearing and what she wanted to say to them. Then just as we were nearing the front of the line Anessa tugged on my hand.
“Mommy! Look! It’s Adelaide!”
Anessa pointed toward a pale blue brick wall next to us, just on the other side of a locked gate. At first I couldn’t see what she was pointing at, then near the top, almost out of reach was one lone ladybug. I don’t know how she spotted it. But she did.
Maybe it was just a random ladybug.
Or…
Maybe it was Adelaide saying hi, right before a character meet and greet, letting us know that she is always with us. Because after the dark, comes the light.
Photo ID: a pale blue wall with an inch wide overhang. Upside down under the overhang is a small red ladybug. A blue sky is seen in the background.
