by Jim Kokoris
Despite all that, Mindy had gotten up early, taken Ethan to breakfast at the Renaissance Hotel where we were staying (a Marriott property: thirty-five thousand points), and was now with him at the pool. This reprieve allowed me some much-needed alone time to think, strategize, and, of course, worry.
I put the time to good use. We would be in Charleston later that day, and a lot was waiting for me there—a lot. So I paced the room, checked my voice mail, listened to message after message from friends and relatives expressing surprise and shock over the wedding, deleted all of those messages, turned the TV on, turned it off, then, even though I had given up any hope of ever reaching her, called Karen.
She answered on the first ring.
“Hello?”
I stopped pacing. “Karen? Oh, hi, baby. It’s me, Dad.”
“Oh. Hi.”
“How are you?”
I never heard her response. Instead I thought I heard Mindy screaming in the hall.
“Come in here now! Now! Move! Move! Move it, mister!”
It was definitely Mindy’s voice, and she was definitely screaming.
“I’ll call you back.” I raced over and opened the door. There, as I feared, was Mindy trying to drag Ethan into the room. He was on his back, crying, his pale skinny body still wet from the pool.
“He didn’t want to leave,” she said. “I tried everything.”
“You should have called! Come on, Ethan.” I took his other arm.
“No!”
“Come on!”
“No!” He swatted at both of us. Mindy jumped away. “He pinched me in the elevator so hard, I thought I was going to bleed.”
“I got him. Just let go! Take the key, open the door. Here, go on. Open it!” I knelt down. “Come on, Ethan. Stinky Bear is in the room. He wants to talk to you.”
“You are so bad, Ethan!” Mindy yelled.
“Mindy, watch your voice, please!” It was then that I noticed she was soaking wet. “Did you fall in?”
“He pulled me in!” She opened the door wide. “Get up, Ethan!”
“No! Shut. Up. Idiot!”
“Come on, Ethan,” I pleaded. “We’ll call Mom if you get inside. We’ll have a Sprite. We’ll look at your photo album. All the pictures. We haven’t looked at that yet.”
“Don’t bribe him. You bribe him too much! That’s the problem!”
“I’m just trying to get him into the room, okay?”
Ethan was still on his back, so, with no other recourse, I grabbed both his wrists and dragged him inside the room. “Now, get up. I’m going to count to three. If you don’t get up, we won’t have a Sprite. One, two.”
I felt his body go limp as his rage, and worry, dissipated. He stood slowly, crying, then reached out to hug me. I pressed his wet body against mine and ran my hand through his wet hair. I could feel his heart beating fast against my chest.
“It’s okay. It’s okay,” I said over and over and over.
* * *
Back on the interstate an hour later, the world scotch-taped back together, Bing crooning “Little Drummer Boy,” a Starbucks resting between my thighs, Ethan making calls on his old cell phone, Mindy wheeled on me.
“What’s going to happen to him?” she asked.
(Note: Mindy’s green eyes were fiercely beautiful, and when she decided to use their full power, max them out, she was capable of seeing through walls, pushing back tides. I felt those eyes on me now, felt them boring down, locking in.)
“Dad?”
I had sidestepped this at the park. I wasn’t sure I could do it again. “What do you mean?”
“I mean, where’s he going to end up? He can’t live by himself. Who’s going to take care of him later on, when you and Mom are too old?”
I paused before saying, “He’ll be okay.”
“He won’t be okay forever.”
“Why do you keep asking this?”
“Because I see what it’s like. Plus, I remember.”
“Everything will be fine.”
“I’m, you know, worried, that’s all.”
“We’ll be okay. Just a bad morning. This trip is rough on him.”
I suspected this wouldn’t do, and I was right. “I don’t know, Dad. We need to start thinking about this now. I mean, we need a plan, an overall plan.”
I drove onto the shoulder when she said that.
“Watch it!”
I swallowed, glanced in the mirror at Ethan, glanced over at Mindy, then let out one very big breath. I hadn’t planned on doing this until Charleston. I had every intention of telling Mary first, but Mindy had opened the door about as wide as it could go, so I decided to walk through. I had kept this to myself for as long as I could.
“Well, actually, I do have a plan, kind of an Overall Plan. I’m taking him to a place. A home. It’s in Maine.”
I turned and watched Mindy’s eyes grow large, and in that moment, in her red sneakers and black hoodie sweat shirt, I saw her as the little girl she will always be to me, my little buddy.
“What? What do you mean? Home? What do you mean?”
“The place, the home, is called Ocean View. That’s where he’s going to live from now on. After the wedding, or whatever, I’m driving him up there, and … and that’s where he’s going to live.”
“What are you talking about? Live? Now? What are you talking about? You’re taking him now? What are you talking about?”
I spoke fast, hoping to overwhelm her with positive facts. “There are only thirty residents, and a three-to-one resident-to-aide ratio. Ethan will have his own room and his own bathroom. It has a gym, a full-size basketball court, and an indoor pool, which is great for him. He’ll love it. The place is made for him.”
“Wait! What?”
“It’s right outside of Camden. Very scenic. Beautiful area. Have you ever been there? Beautiful. A tourist town. It’s like a condo, in a way. We, I mean I, had to put a down payment to secure his space, so we own the room. I’ve been there three times. It’s a state-of-the-art place. Four years old. Glowing reviews. It’s very hard to get into. Very hard. He’s going to love it. We were on a waiting list, but they had this sudden opening. If we don’t take this now, he could wait for ten years, maybe longer.”
Mindy put her hands up in front of her as if trying to ward off a blow. “Whoa! Slow down. Wait a minute! Maine? Are you kidding? Maine?”
I kept going. “There aren’t many places in Illinois. Illinois is a terrible state when it comes to the disabled. The worst. The few good places have long, long waiting lists. So we looked at a lot of other places—in Kansas, Wisconsin, Virginia—and we’re on the waiting list for all of them, but Ocean View called, and it’s by far the best, by far. We ranked them top to bottom. The best one called first. The best one called.”
“When did you decide this? I can’t believe Mom never said anything.”
This was where things got a little complicated. I briefly closed my eyes even though I was driving. “I haven’t exactly told her yet.”
“What?”
“Why. Mad?”
“No one’s mad. Sit back, play with your phone. Here, here’s mine. Be careful with it. Here.”
“You haven’t told Mom?”
“I shouldn’t have put it like that. She actually does know. She’s been there, and she liked it. We were put on a waiting list. She signed the papers and everything, so she knows, she knows. She just doesn’t know that a spot opened up. We thought it would be years still. But they called and said they had an immediate opening for someone like Ethan, so I acted.”
“Without telling her?”
I checked Ethan in the mirror again, saw that he was concentrating on my phone, and kept my voice low. “I almost told her a dozen times, but I wanted her to focus on the wedding, her daughter’s wedding. I wanted her to be happy, enjoy the whole experience. She’s the mother of the bride. She’s had a rough few years. Sally’s cancer … Ethan. Let’s face it—me. Plus, I only had a week to
decide, and involving her would slow things down. She probably would have wanted to go out there again, meet everyone again, which would have been hard with the wedding, impossible. Everything happened at once. So I went out there alone and took care of everything.”
“I can’t believe this. I can’t believe you didn’t tell us. Does Karen know?”
“No, no one knows. Listen, we had to act fast. It’s an immediate opening, and there’s a long waiting list. If we didn’t take it, someone else would. The conditions of the agreement were that spots would be filled immediately. She, your mother, knows this. Trust me, she’s going to be okay with this. She’ll be fine.”
“I wouldn’t be so sure about that. She doesn’t like surprises. I think she’s going to flip out.”
“She might be a little upset, but she’ll know it was the right move. It’s easier to get into Princeton than a place like this.”
I glanced back at Ethan again, wondering, what, if anything, he understood. My phone, forbidden fruit, was doing its job though, so I resumed the offensive: “You know, once people like Ethan turn twenty-two, once they age out, there’s nowhere for them to go. No schools … There’s nothing. No one cares. We’ve got charities for everything—AIDS, breast cancer, heart association, slow food—but no one cares about disabled adults. No one. You know how many autistic adults there are going to be in a few years with no place to go? Millions. Where are they all going to go?”
Mindy started to say something, but I kept pressing.
“Your mother and I, we’re both getting older. We need to do this while we’re still around, so he gets used to the place. If it doesn’t work, we’ll still have time to figure something else out, another plan. I don’t want to wait until I’m eighty to be dealing with this.”
“Maine? What, you couldn’t find a place in Australia?”
“It’s the best place; of all the places we saw, it’s the best. They can deal with people like Ethan there. It was made for him. He’ll be very happy there. I know him; he’ll love it there.”
“I can’t believe you’re doing this now.”
“When exactly would I do this?
“Later, in a few years. And not right after Karen’s wedding. I mean, that’s crazy.”
“She’s not getting married anymore, okay?”
“I can’t believe this. So you’re really on the way there now? This whole trip was really to do this?”
“There’s no point to wait. It won’t get easier with time; nothing is going to get better. He’s not going to improve.”
“He’s gotten better. He’s gotten a lot better. He doesn’t throw up now. You can go to restaurants and shop with him.”
“He almost drowned you in the pool an hour ago. He’s unpredictable.”
She shook her head. “He’s better. You just said, it’s this trip that’s making him bad.”
“I know this is the right decision. If something happens to your mother or me, do you want to watch him, live with him? Do you want to be doing Stinky Bear the rest of your life? Dragging him through hallways? Is Karen going to do it? You both live in New York now—you never see him anymore. You’ve forgotten how it is.”
“I can do it.”
“You know you can’t,” I said softly.
“So, so, some stranger is going to do it? You’re going to leave him with some … some … minimum-wage guy a million miles away? Someone who will beat him up, or … or worse?”
“I thought you’d understand.”
“I understand it’s hard, yeah, but Maine. Now? I don’t know, it’s just—” She stopped. “There has to be another option. Some place closer to Chicago.”
“There are other places, but we could wait ten or twenty years or longer.”
“You can’t do this, Dad. You can’t just leave him. You can’t just … dump him there.”
Those words, dump him, set me off. “Do you think I want to do this, huh? Do you think I’m looking forward to it? No one loves him more than me, no one. But this is the best I can do. It’s a good place. A good place!”
I braced for more protests, more anger, more questions, more guilt, but instead Mindy did something I didn’t expect: she covered her face with her hands and started to quietly cry. My little buddy.
“Oh, baby.” I reached for her, but she brushed my hand away.
“You can’t just leave him, Dad. You can’t.” Then she slid out of her seat and into the back with Ethan.
* * *
Sal was waiting for us on the expansive porch of the Jefferson Davis Inn. Despite nearing sixty, he remained a powerfully constructed person, with a barrel chest and thick arms that sprouted multiplying tufts of black hair. When he saw us approach, he flicked his cigarette into the bushes with his middle finger, a practiced and efficient move, and extended those beefy arms wide. Standing in white linen pants and a pink polo, smoke pouring through his nostrils, he looked like a vacationing Neanderthal, a Town and Country Caveman.
“Heeeere’s Johnny!” he yelled.
I tried to smile, but I was sure it came off more like a grimace. “Sal.”
Ethan bolted from me, racing up the steps, pencil arms outstretched. “Sal! Sal! Sal!”
His uncle warmly embraced him. “There he is! Ethan! Mr. Big. Hi! It’s nice outside, right? Look at that sun! Hot! Global Warning. Been sweating my ass off out here waiting for you guys.”
“Sal, watch the language. He repeats things,” I said.
Sal looked at me, then back at Ethan, and snapped his fingers. “Sorry. Jesus, right. Hey, Ethan, don’t say nothing you hear from me, okay?”
“Nice. Outside!” Ethan shouted.
“Bet your fucking ass.”
“Sal!”
“He may as well learn from his favorite uncle. Get over here.” Sal opened his arms toward me. I closed my eyes as he hugged me hard.
“You’re looking good, Johnny.”
“Thank you.” He released me. “You look … summery,” I said.
He waved away my comment, took hold of both my shoulders, and looked intensely at me. “Hey, listen, all I want to say is, you’re gonna get through this, okay? It’s like when I had that gallbladder thing, that attack. Remember that thing? Thought that was it. I had the urn picked out. One day at a time, that’s one thing that experience taught me.” He raised a solitary finger. “One day at a time.”
“I’ll remember that.”
“There she is!”
“Hey, Uncle Sal.” Mindy dropped her bag on the porch. She’d been quiet the rest of the trip, and I sensed she was in no mood for Sal, normally a favorite of hers.
“Let me look at her! Little Miss Celebrity and everything! I saw you on the Conan O’Brien Show last month! There you were! I couldn’t believe my eyes. My fucking niece! Come here.”
“Your fucking niece.” Mindy disappeared under another Sal embrace.
Sal patted her on the back a few times, then let her go. “So, what’s he like? He an asshole or what?”
“Conan? Oh, tall. Conan is tall.”
“Tall? Jeez, had no idea.”
“It’s a show-biz secret,” Mindy said. “Don’t tell anyone.”
“Who the hell am I going to tell? Hey, where your things? Let me give you a hand. Don’t give me nothing heavy on account of my back.”
Without missing a beat, Mindy handed him her empty plastic water bottle. “Here, take this.”
After a second of confusion, Sal laughed. “Look what she gives me.” He wagged a finger at Mindy. “Look what she gives me! Empty bottle! I always said you would be famous! Didn’t I? Didn’t I? Huh? All those plays in high school? Didn’t I? Huh? The singing, the dancing. And you were homecoming queen, what: Twice?”
“That was Karen.”
“Always knew you would make it. Always.”
“You did,” Mindy said. “You did. Well, I’m going to check in.” With that, she quickly picked up her bag, grabbed Ethan’s hand, and made her way inside.
Sal watched
her leave. “She okay? She seemed a little quiet. She’s usually all over the place.”
“She’s concerned about Karen. We all are.”
“Jeez, John, but you gotta be proud of her.”
“Karen?”
“The little one.”
“Oh, I am.”
“You can’t teach what she’s got. That wit. Quick on her feet with the zingers. Like Ali, stings like a butterfly.”
“Yep, that’s her. A stinging butterfly.”
He lowered his voice. “I gotta be straight about one thing though. That thing with the adult diaper she does. That skit when her ass gets big, you know, inflates like that, whatever, the thing she did last week or whenever. I gotta say, do you think that’s in the best taste? Just between me and you, I know some people who gotta wear those, and it’s nothing to laugh at. Intermittent incontinence isn’t a joke; it can be serious and life changing.”
I considered Sal’s unusually earnest comment and concluded that my big, strapping bookie, maybe-in-the-mob-but-probably-not brother-in-law was possibly, at that very moment, wearing an extra-large diaper, and this saddened me. For better or worse, Sal was a constant in my life, indestructible, and I didn’t like the fact that he might be running down.
“I don’t think that’s what she’s making fun of. She’s making fun of people who are so busy, they don’t have time to go to the bathroom.”
Sal studied me with his hooded black eyes. “See, I don’t see it like that. I see it different.”
“You should talk to her then. I know she values your creative input.” I made a move toward the door.
“So,” Sal said. “What you think of this place? Beautiful, huh? Despite the TV issue.”
I paused and took in the historic Jefferson Davis Inn. It was, as advertised, an immaculate former plantation home, complete with the requisite white column pillars, porch swing, and screened gazebo. Situated on a shady lot populated with weeping willows and a row of arching cypress trees that lined the long entry road, it offered a fine view of Charleston Harbor. Gone with the Wind comes to life, the Web site said, and I had to agree. I walked to the end of the porch and stared out at the water, an unexpected sense of sadness, a gust of regret, hitting me. I had last seen the Atlantic on our honeymoon, thirty years prior; I was seeing it again under very different circumstances.