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For those who aren’t familiar, here are a few details about my family to help the story flow better:
Em is my daughter. Her full name is Emily, but we mostly call her Em. She’s just over two-and-a-half-years-old and has severe cerebral palsy. She’s a happy kid and loves music.
Sara is my stepdaughter. She’s eight years older than Em. She’s a sixth-grader and pro at Zoom school. (She doesn’t appear in today’s story)
Allison is my wife. She’s the super glue that holds us all together.
Okay, here we go.
“What do you think she’s thinking right now?” I ask.
“That’s so funny, I was just thinking the exact same thing,” says Allison.
We’re on our way to Doran Beach in Bodega Bay. I’m driving, while Em is in her car seat and Allison is sitting next to her in the backseat of our Honda CR-V. We were feeling stir crazy and Em has been doing so well in the car lately that we decided to attempt a day trip. It’s our first beach visit since Em was born.
We’re about forty minutes into our hour-long drive and Em is doing remarkably well, even without listening to her music. I can’t overstate how big of a deal that is—and not just because we don’t have to listen to the “Emily 2021” Spotify playlist on repeat. But today she seems perfectly content to look around and listen to our conversation, periodically contributing her own happy noises.
“She must be thinking something, right?” I ask.
“I’m not sure. Do you think she understands language enough to have thoughts?” Allison asks.
I’m not sure either. Em can make noises, but she can’t talk, which makes it difficult to know what she understands. We make it a point to talk to her all the time. We always refer to items using the same words, like her cadre of animated, talking, and singing animals with the names Trilly (penguin), Bailey (bear), Flora (rabbit), and Piper (pig). We act as if she can understand everything a typical child her age can.
The hills west of Petaluma are blanketed with lush, almost fluorescent green grass, reminiscent of the Windows XP wallpaper Bliss—an iconic image taken not too far east of here. The marine layer lingers in the tops of the trees as cows graze in the fields below. It’s refreshing to see so much open land.
The parking lot is more packed than I expect on a brisk wind-swept mid-February afternoon. As we turn into the lot a car pulls out of a spot at the end of the row. There are a few handicap spots open a row closer to the beach, which we could use because Em qualifies for a placard. But I’m glad to avoid the stares from strangers wondering why two able-bodied adults need to park in a handicapped spot.
Today is not a feel-the-sand-between-your-toes kind of day. It’s cold. I’m wearing my pullover SF Giants hoodie, Allison is wearing a down parka, and we have Em bundled in a beanie and her full-zip hoodie—the one with a broken zipper that we packed on accident.
Allison carries Em as we make our way closer to the water, but not too close. I want Em to be able to smell the ocean and hear the waves crashing for the first time. There won’t be any running around splashing in the water for her, not only because she can’t walk, but because it’s too damn cold out today.
I find a flat spot and unfurl our blanket, holding it above my head in the wind like a flag turned on its side and slowly lower it to the ground. The blanket is made from stitched together pairs of Allison’s grandfather Bud’s old jeans. I never met the man. From everything I’ve heard about him, it sounds like we would’ve gotten along great. I wish we could’ve met and played a game of cribbage before cancer got the best of him. By the size of his jeans, it’s clear I would’ve towered over him.
Em is looking tired. She only took a thirty-minute nap earlier. Maybe the sound of the waves will lull her back to sleep.
All the familiar sights and sounds are here: a couple sauntering down the beach, waves crashing, two crazy guys body-boarding in the frigid water, a dog barking, kids laughing, the dog barking again, seagulls squawking, and jesus will that dog shut up already?!
I look at Allison and see Em making a face that can mean only one thing.
“She’s peeing isn’t she?” I ask.
Allison slumps her shoulders and says, “Yep.”
We trudge back to the car through the wind and sand to do a quick diaper change in the backseat. Now it’s my turn to carry Em to a new spot on the beach further back from the ocean and the annoying barking dog.
We timed the trip perfectly with Em’s tube feeding meals. Allison finished up one just before we arrived, so we don’t have to feed her in public. Instead, we can relax and enjoy some semblance of normalcy for awhile.
I hand Em over to Allison and, once again, I lay the blanket down on the sand. I put my foot on the edge to keep it from flipping over with each gust of wind. Allison sits and starts to rock and sing to Em, hoping to get her to nap again. I lay on my side next to them and listen to Allison’s soft voice singing, “You Are My Sunshine.” As I close my eyes and start to drift off, a gust of wind blows sand across the blanket and into my mouth. I spit it out, turn my back to the wind, pull my hood over my head to block the next wave of sand, and close my eyes again.
Em doesn’t go to sleep and I drift in and out of my nap each time more sand sprinkles onto me. But it still feels relaxing. It’s unclear if Em feels the same way. Like most kids her age, she lives in the moment and is more concerned with her immediate surroundings. I try to point to the crashing waves, but I don’t know if she sees them or has any idea where we are. In all likelihood, she’s probably just annoyed with the wind in her face. She starts to whine and that’s our cue to head back to the car for the drive home.
In the times before COVID, we never would’ve considered going to the beach on a day like this. After nearly a year of isolation and being cooped up in our house, we were desperate for a change of scenery.
We stayed for an hour and nothing overly dramatic happened. We looked like a normal couple with their normal child sharing a normal, happy day at the beach together.
On the drive home, I say, “You know, if you boil it down, we drove over two hours and paid $7.00 so I could take a nap while sand blew in my face.”
But the trip to the beach meant much more than that. It felt like a weight lifted. Now we know our world can open up beyond our home and the neighborhood around it. We can make a day trip that’s not just a drive to San Francisco for a doctor's appointment. Trips in the car with Em were awful for so long. Early on, she would scream and nearly hyperventilate. Allison would sometimes resort to holding Em in her arms because it was the only way to give Em some relief.
I can’t pretend I know what Em is thinking, but I know she’s happier now and that makes me smile.
Thank you for reading. It means the world to me. I’d love to hear what this story brings up for you in your life. Leave a comment and let’s chat.
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Huge smile over here
God gave you a special needs child because he knows you will love her and care for her no matter what! God Bless You and Allison.