I need a vacation.
Somewhere on Cape Cod
We spent last week on Cape Cod. We stay at the same rickety little cabin with the rock hard beds and the 1970 decor. It's just a half a mile walk from the town beach. It's a nice beach. It's not really well maintained and more rocky than sandy, but it's walking distance and because it's not a premier location it's never crowded. There are dunes there, like most of the Cape, and a broad salt marsh with a long boardwalk that crosses the winding channels that drain down with the tide. The kids love the channels because the water is shallow and warm and full of sea critters. We caught hundreds of hermit crabs and chased minnows while the terns plopped into the water around us like stones.
I like to walk down around the sandy point. It's a good distance from the parking lot so it's usually pretty deserted. Out there I don't check e-mails. I don't listen to voicemails. I don't see the lawn that needs to be mowed or the office with the stacks of papers or the piles of toys that need to be put away. I leave most of my daily stresses behind.
Sandy Neck Beach
But I never escape Usher syndrome. Not even on vacation. I think this is true of every family that deals with Usher. It's always there, grinding away, sneaking in to every thing you do everywhere you go. And it's exhausting.
We walk down to the beach and my daughter keeps bumping into me. She has Usher syndrome and she has poor balance. She can't really walk a straight line. So we keep drifting toward the center of the road until I'm staring at the grill of an oncoming UPS truck. Or I keep pushing her back in line, step after step, harder and harder, until we are jokingly jostling each other or, if we're not in the best of moods, shoving each other in to shrubs and parked cars.
Sunset over the salt marsh
Or we have a fire on the beach. We walk down to the beach loaded with firewood and chairs and blankets and marshmallows and chocolate bars and juice boxes. It's still light when we set up and slowly the sun burns down as the firewood dwindles. When the last of the logs is thrown on it's dark and the moon has tossed a fistful of stars in its wake. Bella can see well enough by the light of the flames, but when we douse them it becomes a logistical disaster. Bella is a pack mule. She carries most of the chairs down to the beach. But in the dark she can't see well enough, even by the light of the flashlight, to carry the weight and negotiate the soft sand and loose stones. So we load up my seventy year old mother-in-law with everything. No, I'm kidding. She leads Bella and the rest of us turn in to Sherpas. Of course Bella needs all the flashlights so I stumble through the dunes bristling with furniture and sticky with s'more residue.
Or we walk through the shallows in waist deep water, trailing a bucket, and dipping for snails and crabs and minnows and other sea critters. Our eyes are focused on the sand. All the action is at our feet. Bella doesn't wear her cochlear implant because she occasionally has to dip her head in the water. She drifts beyond arm's length and watches the rocks and sand. So when a flounder settles in the sand or a blue crab skitters past, I can't yell to get her attention. I can't splash her to get her to turn and see me sign because it spooks whatever would be of interest. My son Jack hears me call so he sees what I see. But Bella misses a lot, sometimes gets frustrated, and I feel guilty.
The photographer's little brother
Bella brings her camera on vacation. She likes to take pictures which is good, because none of the rest of us do. It's nice to finally have some vacation photos with which to bore our friends. Better still, she's becoming a good photographer. Her little brother says her pictures look like National Geographic. She has a great eye. In fact, all these photos are hers. But I find it hard to celebrate her growing skill. I'm wary of encouraging her to pursue it. I'm worried she'll lose it in time.
Stoopid Usher syndrome.
I go for a walk around the point to try to forget about my vacation. It's night and the moon is bright. The beach is silver and the tide is coming in. I pass one fisherman, but otherwise I'm alone. On the tips of the lapping waves, I notice fluorescent dots. They wind and loop along the sand as the sea inhales and exhales. It's phosphorescent plankton and it blinks bright green on the sand and fades before the next wave arrives to replace the glowing dots. It looks like the stars are washing ashore. The kids would love it. But it's dark on the beach and Bella would have a hard time walking. For all the effort it would take to get her down there, she might not even be able to see them. I might be rousting her to remind her of all she misses. So I walk back home, give them each a kiss, and keep the wonders I've seen to myself.
I don't know if any of this is right or wrong or just is. The trip was a lot of fun and the kids, particularly Bella, look forward to it every year. I do too. Family vacations are rarely relaxing. There's always bickering and 'tell him to stop touching me' and uncomfortable beds and odd schedules. But in the past, they were also an escape. They were a new set of simpler problems instead of the raw, rubbing, every day problems. That's not the case with Usher syndrome. It's always there, like beach sand in your hair.
A self portrait of the photographer in a typically serious mood.