An Uncomplicated Life

by Paul Daugherty

  “I make my world-famous meat loaf,” Jillian explained.

  “That you do,” I said.

  Early on, Jillian had some trouble reading recipes. Occasionally, measurements threw her. There’s a big difference between a tablespoon of salt and half a cup. The nights Jillian cooked, I was ready for just about anything, including a call to the pizza guys.

  But Jillian learned. She’d begun helping me on the grill: Salmon, turkey burgers, hot dogs. Jillian’s capabilities extended to spaghetti and meatballs and baked chicken. Her repertoire was far more extensive than mine was at age 21. If it didn’t fit in a Crock-Pot, I didn’t eat it.

  “There’s more to moving out than cooking,” I said.

  “I do my own laundry,” Jillian shot back. Actually, she did some of her laundry, occasionally. Jillian was still a little shaky when it came to water levels and temperatures. And she needed a stepstool to reach the knobs on the washing machine and dryer.

  “Yeah, you do laundry. Once every three months.”

  “Dad.”

  “Jillian, if we let you do laundry only when you wanted, you’d walk around looking stricken,” I noted. “Child Services would come after us.”

  “Da-a-a-a-d.”

  Every couple of days after that, Jillian tossed out some form of moving-out pronouncement. We could be discussing the fate of the free world or where to find a good $5 cigar, and Jillian would interject, “I’m not your little girl anymore.”

  “You’ll always be my little girl.”

  “What I mean is, I’m ready to move out.”

  We’d started to make a plan. With Ellen and Dimitri, Kerry and I set fall 2012 as the target time. We picked September, which would coincide hopefully with the start of Jillian and Ryan’s last year at Northern Kentucky. We didn’t want to combine the stress of their finding jobs with the strain of living on their own. A year of having the certainty and regimentation of college would ease the transition. We didn’t tell Jillian and Ryan this. They still had to learn some things.

  Managing money, eating properly, keeping an apartment relatively clean, and not bothering the neighbors. And, ah, well, um . . . sex.

  They would share a bed and all the typical urges. It would be wrong to assume that adults with disabilities don’t have the same desires as the rest of us. Jillian and Ryan experience the same culture. They go to the same movies, watch the same TV shows, and absorb the same obsessions. They’re curious, too.

  We had to take this in stages. We didn’t dismiss their capacity for love or their understanding of the different ways to express it. We encouraged it. But those with intellectual disabilities bloom late on the emotional side, too. Things needed to be explained. Things needed to be tried.

  The first step was to leave Jillian home alone for a night. Not long after Jillian’s 21st birthday, in October 2010, Kerry and I spent the night at a local hotel, ten minutes from the house. We checked in late in the afternoon. We armed Jillian with copious Post-it notes—lock all the doors, don’t answer the land line, feed Lucy—a box of spaghetti, a bag of frozen meatballs and one request: “If you get scared, you can call.”

  Jillian did call that night, at 8:30 p.m. or so. I could hear music in the background. “What are you doing?” I yelled into the cell phone.

  “I’m having a great time,” she said.

  She’d cooked dinner, cleaned the kitchen, and made popcorn. She planned on watching a movie. For the moment, she was listening to music and singing loudly. “You okay?” I asked.

  “Yes, I am. You guys stay as long as you want.”

  Well, all right then.

  That test aced, Jillian assumed she was ready for bigger things. “I’ll stay with Ryan,” she declared.

  Well. That would take more prep work.

  We’d started a few years earlier, when Jillian was 19 and Ryan was 21—by encouraging them to spend time alone after dates. The basement was the room of choice. We’d give them an hour or two. No rules about keeping lights on, or feet on the floor. We’d had The Talk. Actually, we’d had several. They were the same talks we’d had with Kelly, covering the same, well-worn ground. Ellen and Dimitri did the same with Ryan.

  All agreed Ryan would be respectful of Jillian’s wishes. She would drive the bus when it came to what sort of mutual exploring would be done, and when. Ryan, being a guy, was frisky. Jillian, not being a guy, was less so. Each was persistent.

  On a drive to NKU one morning, Jillian was riding shotgun, with Ryan in the back. He leaned forward to drape one arm over her left shoulder. He curled his other arm around the back of the seat and across her right shoulder.

  Ryan was holding a picture of the two of them from a prom they’d attended. He rested his chin on her shoulder and extended the photo to where Jillian could see it. In the picture, they’re holding hands. “I love you, honey,” Ryan said. Jillian returned the kindness. Then Ryan said, “Is this how you’re going to hold my hand when you’re pregnant?”

  I swerved into the adjacent lane.

  “Not yet, Ryan,” Jillian said.

  “Honey,” Ryan said. “Come on.”

  “That ain’t happenin’,” Jillian said.

  Order restored, I caused no accidents. And Jillian and Ryan set out on that timeless road of appropriate and respectful intimacy.

  That didn’t end the discussion, though. Kerry and I knew that, at some undetermined time, we would have to sit down with Ellen, Dimitri, Jillian and Ryan, and explain to them that they wouldn’t be having children. The likelihood of a couple with Down syndrome having a child with Down syndrome is great. Even if it weren’t, the responsibility of caring for a child would be overwhelming for them. That was a topic for a future time.

  Meantime, Kerry had a woman-to-woman talk with Jillian. Intimacy confused Jillian. It came with all the typical human emotions. When do I allow it? When I do, what do I allow? How much is too much? These were delicate negotiations, even for a couple whose entire dating lives had been spent with each other.

  “When you’re ready, you’ll know,” Kerry said.

  “I’m not ready yet,” Jillian responded.

  Kerry said there was nothing wrong with that. “Ryan loves you and respects you. He understands.”

  “Okay, Mom.”

  Less than a week later, we were all at our cabin in the woods, a weekend place 70 miles away that we’d built a decade earlier. Ellen and Dimitri owned a place just up the road so Ryan had also made the trip. He and Jillian had taken a long walk together before dinner, apparently engaging in high-level talks. They both arrived back at the cabin, pleased with themselves.

  “ ’Member that talk we had last week?” Jillian asked Kerry. Yes.

  “I’m ready now.”

  That’s when we arranged for Ryan to spend the night at our house. It was almost a year after Kerry and I left Jillian home alone. This time, Kerry and I would be staying at the cabin. Jillian and Ryan would make dinner together, watch a movie, have dessert and . . .

  As Kerry and I were leaving, I said, “Ryan?”

  “Yes, sir?”

  “You be good to my little girl.” Whap-whap-whap.

  “I’ve always been treating your daughter good, sir,” he said.

  We spent a few hours on the deck at the cabin that night, wondering what the lovely couple was doing at that very moment, and marveling a little at the human condition.

  “Can you believe this?” I asked Kerry.

  Silly question. Kerry had been the one who’d always assumed Jillian would attend typical classes, take college courses, get her own place to live and get married.

  “Of course I can,” she said. “But do you think she’s ready?”

  “No idea,” I said.

  How do any of us know? Having sex is one thing. Making love is something altogether different. One is a motel room; the other is a wedding night. Virginity is quaint now, damned near Victorian. The notion of “saving” oneself for marriage probably died with the invention of the backseat
. Were Jillian and Ryan ready? Only they knew that.

  I knew one thing, though: Their first time would be all it was supposed to be. It wouldn’t be cheap or regretful. They’d come too far for that. Jillian was appropriately concerned; Ryan was entirely respectful. They’d been together seven years. They knew each other very well. Knowing each other intimately didn’t seem a great leap.

  Ellen summed it up best: “They are there for each other, so they don’t have to do things alone. Things the rest of us do, that have to seem so scary for them. They’re moving forward together, knowing that each loves the other totally for who they are.”

  We resisted calling them, except once to see how they were doing. They were doing fine. Okay, then. Goodnight.

  We got home the next afternoon, not knowing what to expect and ready for just about anything. The lovely couple was sitting in the family room. Canary-eating cat grins dominated their gazes.

  “How was it?” Kerry asked.

  “Good,” Jillian answered.

  I cocked my head and raised my left eyebrow, a move Ryan had long since termed “The Look.” Fist found palm. Whap whap whap.

  I pretended to be greatly concerned. At least I think I pretended.

  “How good?” I asked.

  “Dad,” Jillian said.

  “Paul,” Kerry said.

  “I’m always good to your daughter, sir,” Ryan said.

  And that was that.

  Later, Kerry sat Jillian down. “I want you to be able to tell me things,” she started. “I want to know what you’re thinking and feeling. I don’t want you to think you can’t talk to me. We’re both women. We understand these situations. I want you to be comfortable talking to me. Okay, Jillian?”

  Jillian nodded. Yes.

  “Good. Is there anything you’d like to say?” Kerry asked. “Any questions you have? I want this to be a wonderful experience for you. This will just be between us. I promise. So?”

  “I have just one question,” Jillian said.

  “Anything,” Kerry said, anticipating the best, prepared for everything, grateful to be included. This was a titanic moment. “Anything at all. What?”

  “When can we do it again?”

  They would do it again, many times, before the move. Sleep in the same bed, that is. What transpired there was their business. We never asked. On vacation, they slept in the same bed, listening to the waves of the Atlantic outside their window of a house in St. Augustine, Florida. Dimitri bought them a book. It contained, well, helpful hints, fully illustrated. They stopped wanting to go to the cabin.

  “Ryan and I stay home,” Jillian offered.

  From the cabin, Kerry and I would call once at night, and again in the morning. The a.m. calls were especially amusing. Once, Kerry called Jillian’s cell, then the home phone, and got no answer on either. She left messages on each. We worried briefly until Jillian called back.

  “Sorry, Mom. We didn’t hear the phone.”

  We?

  “Ryan and I,” Jillian said. “We were in the shower.”

  Oh.

  JILLIAN STILL WASN’T EXACTLY sure about things. The day before her appointment with the gynecologist, in June 2012, when the doctor would prescribe birth control pills, Kerry prepped her. “You’ll have to tell the doctor you sleep with Ryan,” Kerry said. Jillian nodded, warily.

  “You’ll want to tell her you two are getting your own apartment, probably in the fall, and eventually you will have intercourse.”

  “In-course?”

  “Sex. I assume you haven’t yet,” Kerry said.

  Jillian said no, they hadn’t.

  “Why not?”

  “Because I’m not ready,” Jillian said.

  “What worries you about having sex?”

  “I don’t want to have a baby yet,” Jillian said.

  “Perfect, because that’s what the Pill is for.” Sex isn’t just about having babies, Kerry told her. “It’s fun. Is Ryan ready?”

  “Yes,” Jillian said. “He wants to have a baby.”

  “Well, you’re not ready to have a baby. You are ready to have sex, whenever you feel like it,” Kerry said.

  Jillian gave that a long thought. “We’re going to have a dog,” she said.

  Once we told Jillian and Ryan we were targeting September for their move, they talked about nothing else. We’d taken Ryan with us on vacation to Florida. On the way back, Kerry and I overheard this conversation:

  Jillian: “You don’t have to tell me now. You just think about it and tell me later. But I need to know because we’re going to live together forever.”

  Ryan: “Honey, I don’t know if I have any allergies.”

  They were never allergic to each other. They fought, of course, usually when Ryan flirted with other girls or Jillian got too bossy. (She got that from her mother.) They worked it out. They wouldn’t have lasted seven years if they hadn’t behaved maturely and respectfully.

  Moving out, moving in, the mysteries of attraction, the intimacy involved. Jillian’s fearlessness was put to the test. Until then, her life had been safely cocooned. She knew where her heart was. It was at home, with her brother, her parents and her dog. It would be moving now. It would take up residence with her boyfriend, in a place of their own—where they could stay up late, but she couldn’t say goodnight to her parents.

  Kids move out all the time. The scene is played out a million times a day. Not so much for young adults who have Down syndrome.

  The push-pull got to Jillian occasionally. After the talk we’d had with her on that night in May 2012, she excused herself. “C’mon Lucy,” she said and walked through the house and out the front door. Lucy followed.

  Jillian sat on the front stoop for an hour. She put her arm around her dog. I don’t know what Jillian was thinking—weighing the pros and cons, probably. I liked it, though. Jillian was assessing her life and where it was going, just like the adult we’d always hoped she’d be. I was proud of her.

  CHAPTER 30

  One More Drive

  Into a dancer you have grown.

  —JACKSON BROWNE

  Seventeen years earlier, when I put Jillian on that first school bus and watched her attack its steps on her knees, I’d hoped for this moment. Now the moment was here, and I didn’t know what to do. Yearning is the most contrary of emotions.

  It is a Friday in September 2012. The next day, Jillian will be moving with Ryan into their own apartment, just across the street from the Metro bus stop where for the last three years Jillian has boarded the first of two buses to NKU. Today I will drive Jillian to the bus stop for the last time. It is the final leg of this middle journey between what we’ve dreamed and what we’re realizing. It won’t be the last stepping out. Worlds remain for Jillian to conquer, and she can’t do it alone. But there is a finality to this one, as if we’ve run out of sidewalk.

  “Are you okay, Jills?” I ask as we get in the car for the eight-mile ride to the bus.

  “I’m just a little bit shaky, a little bit,” she says.

  You and me both.

  “It’s okay,” I say. “Lots of people leaving home for the first time feel that way. Lemme ask you something.”

  “Yeah?”

  “Every time you’ve done something new, hasn’t it worked out okay?”

  “Yeah.”

  “Like your first day at NKU. Remember how nervous you were?”

  She nods yes.

  “How’d that work out?”

  She smiles. “Good,” she says.

  “Remember your first night home alone, when Mom and I went to the hotel? That worked out great, didn’t it?”

  “Oh, yeah,” she said slyly. “And then me and Ryan started staying home together.”

  “Ryan and I,” I say.

  “Da-a-a-a-d.”

  “Jillian, every time you’ve done something new—new school, new job, now your own place—it has worked out. That’s because you’re confident and strong. Right?”

  “
I’m strong.”

  The car trips—first to NKU, then to the bus stop—were the logical extension of the breakfast table talks, the Coffee Song and the hand holding. The whole Jillian-Dad catalog. We figured out the world, day after week after year. One passage ended, the next began. I paused to lament the passing of each, but not for long because I knew another would take its place.

  Now, I’ve run out of anothers.

  A few days earlier, Missy Jones had told me that in a class she taught about family relationships, Jillian had spent much of the time in tears. Jillian had recounted in great detail our hand-holding days to the school bus stop at the end of the common drive. Now she wasn’t crying. At least not a lot.

  “Jills, Mom and I won’t be far away. Ellen and Dimitri will be even closer. Any time you want us to come over, we will. In the meantime, you get to spend more time with the love of your life. Okay?”

  “Okay, Dad,” she says. “I’m going to miss you and Mom,” Jillian says. “And Lucy.”

  I know.

  “And Dad?” she says.

  “Yep.”

  “ ’Member when you held my hand to the bus stop every day?”

  “Of course I do,” I say.

  “I was your little girl then.”

  “You’ll always be my little girl.”

  “That’s what I want to say to you, Dad. I always be your little girl, even now that I have my own place.”

  “Well, I’m glad that after all these years you’ve finally wised up,” I say.

  “You’re my best father,” Jillian says.

  It’s a little before 8:00 a.m. when we pull into the parking lot. The bus arrives at 8:05, without fail. Jillian likes to stand at the stop. It makes her feel more grown up. We don’t linger. Not even on this day.

  “I’m going, Dad,” Jillian says.

  I know.

  “Have a great day, sweetie,” I manage.

  “I will.”

  She hugs me, a second or two longer than normal. Or maybe I’m just imagining that. Probably, I am. I watch my almost 23-year-old little girl make the short walk from the parking lot to the bus stop. Time for a new sidewalk.