It has always seemed funny to me that there is a sense that vactioning with children is not really a vaction. I remember, perhaps a year ago, seething over a particular article by a dad bemoaning his inability on vacation with children to sleep late or drink much or relax on the beach or have a conversation. He said that because of this it wasn’t actually a vaction. Reading it I felt like I’d been slapped in the face. All I could think was how much I wished Esmé would someday be able to nag me play in the sand with her or splash me with far too cold water…how much I wished that we could show her new things and share new experiences together
Finally we are able to be away with her, for vacation for the first time in three years. And it is true…we are getting far less sleep than we do at home. She seems to be particularly disturbed by falling asleep in these new surroundings…only drifting off quite late at night. Last night after several breath-holds and one seizure, it was only after André and I turned on all the lights and began talking calmly and steadily that she finally drifted off…around midnight.
Her (plentiful) needs still have to be met. We are putting something in her tube every 2 hours at least all day: food, extra water, meds. Everything we do has to be planned around her…like at home, but it is more complicated to pull off in unfamiliar surroundings.
Today we took her to the beach for the for the first time…We drove to the dunes in Bouctouche, pushing her wheelchair along the boardwalk, then carrying it onto the sand. We thought she would love it, because she so enjoys water. But something wasn’t right for her and after a few quick trips to dip her feet in the water she started to panic. We couldn’t tell if she was warm or cold. If there was sand somewhere uncomfortable. If it was all just overstimulation…but, she had a handful of breath-holding seizures. And, just like we must do at home, we were packed up and rolling in no time…thankful for the extra hands of my mom and step-dad.
She was fine. It was fine. But we couldn’t hang out there any longer waiting for something worse to happen.
Hell, we even had a good laugh about halfway back when Ez had relaxed and was resting in her chair. A woman walking the other way said Ez was “lucky” being pushed…after a respectable distance André and I started giggling. We said: “Yeah we’d push you too if you’d just had three seizures, but you’d probably want an ambulance or something fancy like that…”
Was it how anyone wanted to spend the day? Absolutely not. But, this is our life. And I still feel so grateful just to be able to be here, trying new experiences–even when we have to throw in the towel on them for some undecipherable reason. And I was happy to have a simple and quiet day afterward, watching Daniel TIger and taking a bath…helping make a nice dinner.

It seems crazy to think that somehow there would be an expectation that vacation would be or should be different. Esmé doesn’t stop being a child for vacation any more than I stop being a mother…or anymore than her seizures stop coming. But it is a chance to be more fully be in your life, more fully present with your loved ones as they are…a chance to lean into that love and see it in new and different ways.

Right now I am lying in bed, Esmé asleep next to me, breathing deeply. All the lights are on. The bed is tiny. The room is a mess. I’d hoped to have a bit of time with André before bed…But it was a perfect night…because I decided to not try to put her to sleep. I decided it didn’t matter that we don’t have a rocker, or that I forgot the usual night night book. 
Instead we sat up reading the “wrong” book: Goodnight Gorilla…because it is what we had.
She found it to be a riot, laughing hard at the part where all the animals are in the room and they say “Goodnight.” Her laughter outright shocked me, I didn’t know she followed stories like this…so we read it four times, giggling until we couldn’t stand it anymore. Then she rolled over, settling into the bed, and said “night night” to me and giggled again, seemingly remembering the story.

Five minutes later, she was asleep.