For the third year in a row, we spent Memorial Day weekend with friends at the beach. Except my daughter didn’t come with us, deciding instead to stay and continue training for an important competition and to go to school on Monday. The district cancelled the holiday in an effort to make up for the excessive snow days. She arranged to stay with teammates and a school friend, organized rides, and packed herself up. She’s like that.
On the drive to the beach, which included traffic and a dinner stop at the world’s slowest burger joint, Milo maintained good spirits and even announced, “I think this will be a great vacation.”
So, collected in the beach house: me, my husband, Milo, our friends, their 15 year old son, his friend, and their 2 year old son. Removing my daughter from the equation turned out to be a gift. Without the common, yet constant criticism a sibling provides, and without the tricky social navigations and disapproval of authority figures that school provides, the odds of a good weekend were in Milo’s favor. The weather was glorious, he got out of the car on Friday and didn’t get back in until Monday. His room had easy access to the bathroom and its own TV with cable. The kitchen was stocked with his favorite food, including cookies and goldfish crackers.
When Milo wasn’t watching Spongebob or downing chicken and rice he was playing in the ocean with the older boys or reading to the little boy. Playing in the waves is Milo’s glory. It’s not unlike the years he spent in OT, finding relief from his sensory integration disorder. He loves the slam and the rhythm. The sweetness and patience of the older boys made it possible for Milo to lose himself in the ocean for hours on end. Spending time with the little boy gave Milo a feeling of trust and competence. He happily held hands with the little guy as they made their way down the stairs from the dunes to the beach or searched through the house for toy trucks.
And even controlling for every factor that might make Milo feel oppressed or sad or lonely or lost, the weekend wasn’t all good. On the first morning, a large black shark’s tooth washed up at my feet. I clean and showed it off. Everyone lent me their theory on what a shark’s tooth means in terms of luck and fortune, and everyone spent the rest of the weekend casually looking for a shark’s tooth of their own.
Everyone but Milo. Milo took the search extremely seriously. He was determined to find a shark’s tooth. We took several long walks together down the beach collecting rocks and shells and he scooped up endless bits and pieces shaped like shark’s teeth but never a shark’s tooth. Each false promise drew first his ire and then his deflation.
Why can’t I find one?
It’s just luck Buddy.
Finding one was just good luck?
So not finding one is bad luck?
If I found close to 20 things that looked like they should have been shark’s teeth but weren’t, would you call that bad luck?
Well I don’t think it’s bad luck, I think the ocean DOESN’T WANT ME TO HAVE ONE.
I don’t think it’s personal Milo.
Of course it’s personal. Because I NEVER EVER can have what I want. I only ever have bad luck. Most people have some good and some bad luck but not me, ALL I HAVE IS BAD LUCK.
I think we all had good luck with the weather, and the food, the fireworks, and how well we get along. I think it’s been a lucky weekend.
That’s what you think. But it’s not what I think. It’s not what I know!!!
He’s right. What he thinks and what he knows are different from the rest of us. This is how his illness manifests. He doesn’t believe in luck because he’s paranoid and because he takes everything personally. Even when he doesn’t want to take everything personally. I tried to give him the shark’s tooth but he bellowed, “no, that would be cheating,” as if there’s some code he is not living up to. Even when he expects a great vacation, he can’t let his suspicions wash over or off him. There’s been progress and comfort, maturity and, finally, some buoyancy in Milo’s life this past year, yet he still so often, in his pain, sinks like a vigorously thrown stone.