“Lily wants to take you up on your offer for a sleepover. Her eyes lit up when I told her,” her mom, Carolyn, texted me last Saturday afternoon. “What time is good for you?” This was a momentous occasion. Carolyn and I had discussed the possibility of a sleepover for months, but we were concerned both girls weren’t quite ready. Lily gets homesick when she was away from her parents; Jo Jo doesn’t do well with changes in routine. But the boys were away on a Cub Scout camping trip with their dad, and Jo Jo, while happy to have some alone Mommy time, seemed lonely.
And besides, it was one of those milestones you’d expect for typical kids, one that I’d always wished for but wondered if it would ever happen for Jo Jo. The little-girls-in-PJs-and-fuzzy-slippers-sleepover.
Lily showed up promptly at 5:30, resplendent in freshly washed hair and pink bunny slippers, Carolyn dutifully toting a small bag loaded with a sleeping bag, pillow, pajamas, hair brush, and small stuffed animals. (I had to admit, Lily was coming prepared.)
“I told our friend Silvia at soccer practice I was having a sleepover at Jo Jo’s and Silvia kept saying “no way! No way!” Lily told me proudly.
“That’s great,” I said, wondering if Jo Jo would live up to expectations. Right now she wasn’t being very social. She was glued to her iPad, intently playing one of her phonics games. “Hi Lily,” she said when Lily wandered over and then, when she perched on the edge of the sofa to watch Jo Jo, my daughter flapped her hand at her and swatted her away.
Lily seemed unfazed. “Jo Jo doesn’t wet the bed, does she?” she asked warily as her mom prepared to walk out the door.
“She still wears a nighttime diaper,” I said. I’d tried to take them away over the summer, but she wasn’t yet ready. Since Jo Jo has low muscle tone, she has trouble controlling all of her muscles—including her bladder muscles—and she and I had both gotten tired of having to wake her up in the middle of night to clean her up from a sea of pee. It hadn’t occurred to me she might be having a sleepover where her nocturnal potty habits would be called into question.
Lily wrinkled her nose. “Will she pee on me?” she asked warily.
“Well, she’s wearing a diaper, so if she does pee a little when she sleeps, it’ll be contained.” Lily still looked troubled.
“You have your sleeping bag, Lily,” Carolyn interrupted. “If you’re really worried about it then you can zip yourself in it and sleep on top of the covers and there will be absolutely no possible way any pee will make its way over to you.” “I’d offer to let you sleep in Geoffrey or Teddy’s bed,” I added, “but they sometimes pee in their beds too.” I didn’t add that while they were both occasional bed wetters, they both refused to wear any type of nighttime pull up or bed pad, and as a result their room often smelled like the inside of a dog kennel.
Carolyn left. The girls ate pizza. Lily and Jo Jo watched a Halloween-themed Disney movie on Netflix. “I don’t want Jo Jo to be scared,” Lily told me, wrapping her arms around her. Then we played Bingo. Lily called out the letters and numbers, Jo Jo placed them. Not always in the appropriate places, but Lily didn’t seem to mind.
At 8:30 we went upstairs to brush teeth and Jo Jo had her bath. “She doesn’t take her own shower?” Lily asked, surprised. I soaped up Jo Jo’s hair into a pointy arrow and Lily rinsed her off. (Jo Jo usually hates that part, but was fine when it was done by fab Lily, as opposed to say, frumpy Mommy). They brushed each other’s hair and Jo Jo even permitted Lily to adorn her tresses with a big pink bow, something, which again, she absolutely refuses to let me do. They hugged each other. We read Frozen and Cinderella. “I want Jo Jo and I to live in the same castle when we grow up and get married,” Lily told me. She’d discovered one of Jo Jo’s ballet tutus and was whirling around the room to a rendition of Jo Jo’s version of the Brady Bunch theme song. Ivry sat on the bed, paws perched over the edge, panting slightly but seemingly content. The girls had insisted she sleep with them tonight.
So far, so good. “Bedtime,” I said. I positioned both girls under the covers and went to turn out the light.
They were quiet as I left the room. I went downstairs to start cleaning up, but after a few minutes I heard yelps, giggling, and small feet scurrying around the room. They’ll settle down eventually I told myself as I wiped down the counter. Then I heard a door opening and feet pounding out into the hallway.
I walked up the stairs, nearly colliding with Ivry. She had a tutu around her backside and a wild, panicked look in her eyes as she raced past me down the steps. “What’s going on up here,” I asked Lily.
“Nothing,” she said innocently.
I walked into Jo Jo’s room. “Stop making noise,” I told her sternly. She yelped again
“Jo jo,” I said. “Jo Jo quiet. Ssh!!”
“Ssh,” she agreed, putting her fingers to her lips. “Ssh.”
I closed the door and went back downstairs. But not for long.
Jo Jo, absolutely beside herself with the fact that her bestie was in bed with her, had started to play a game. One that involved her squealing loudly, then shouting, “Lily! Shut up! Lily! Sssh!” The first few times, it was kind of cute and funny. But as I schlepped upstairs for the sixth time, it wasn’t so amusing anymore. Lily looked exhausted and Jo Jo had developed her I’m-absolutely-overtired-and-having-a-sensory-overload glassy eyes stare.
“Both of you, in bed now, quiet,” I said. Then, sharply, to Jo Jo, “You keep this up, no iPad tomorrow. No TV.”
That seemed to work. There was a blissful ten minutes of quiet. I settled down in the playroom to read the last 30 pages of Fates and the Furies. Then I heard a thump, and feet scurrying around, and Jo Jo shrieking “No, Lily, no, no no!”
I raced back upstairs. Jo Jo’s floor lamp was on. Lily was standing by the bed and Jo Jo was sitting up looking indignant.
“Why is the light on?” I asked wearily.
“Jo Jo turned it on,” Lily said quickly.
“Lily,” I said. I wanted to tell her Jo Jo didn’t have the manual dexterity yet in her hands to turn on the lamp, but that seemed beside the point.
The truth came out. Lily had gotten scared in the dark, so she’d asked Jo Jo if they could sleep with the light on. Jo Jo had agreed, then when Lily had actually gotten out of bed to turn the light on, Jo Jo had gotten annoyed and yelled at Lily to go home.
I stared at the two snot nosed, bawling second graders in the bedroom. This clearly had developed into Armageddon.
“I’m tired and Jo Jo won’t let me slee-ep!” Lily wailed. She was still wearing one of Jo Jo’s tutus.
I put them both into bed and turned off the light, but by this time they were past the point of redemption. Lily was clearly exhausted and ready to go to sleep, but Jo Jo was too overwrought and overstimulated to let her. She rocked back and forth in the bed, bellowing.
“I don’t think Jo Jo’s tired. Maybe we should go downstairs and play a board game,” Lily suggested.
Images of two wildly overtired little girls playing Monopoly floated through my mind. I saw Jo Jo, majestic in her Hello Kitty nightie, getting fed up with the game’s pace and screaming “no” upturning all the houses on Park Place and Boardwalk.
It was now 10:30. I made an executive decision then and there.
“Separate rooms,” I said, and marched a clearly wiped Lily into the boys’ room. She collapsed into Teddy’s bed. I lay there until her breathing lengthened and deepened and I knew she was asleep. I heard a few squawks from Jo Jo, but when I checked in on her she was lying on her tummy on her bed, finally calm.
(Little did I know, at the exact same time, Teddy’s dad was roaming the Cub Scout campgrounds with a flashlight on his head, searching for Teddy’s beloved stuffed dog, Bones, who had gotten lost at the cookout. No one was sleeping well tonight.)
I went back downstairs to finish the last 20 pages of Fates and Furies. I had read ten pages when I heard a door open, and feet pattering, and looked up to see Lily racing down the stairs.
She was crying. “I can’t sleep,” she sobbed. “My tummy hurts!”
I scooped her up and brought her back upstairs. “Do you need to go to the bathroom?”
“No,” she said.
“Do you want to call your mom?” “No,” she said.
“What would make you feel better?” I asked.
“I want to sleep with Jo Jo,” she said somberly. “But she won’t let me.” And then she puddled up again.
“Oh honey,” I said, hugging her. “It’s not that Jo Jo doesn’t love you. She does. It’s just that sometimes she doesn’t like changes in her routine, and she was so tired, and she doesn’t have the words to express it,” I stopped. Lily’s eyes were closing and she was falling asleep literally in my arms.
“Would it make you feel better if you went back into Jo Jo’s room?” I asked.
We walked in, quietly. Jo Jo was out cold, still lying on her tummy, tush up in the fetal position. She groaned slightly but otherwise stayed asleep while Lily crawled back underneath the covers. She rested her head on Jo Jo’s hair.
“Better?” I asked.
She nodded. “Can you stay with us?” she asked. “My mom sometimes lies down with me until I fall asleep.”
I stretched out on the foot of the bed and closed my eyes. My mind was still racing. I thought about how I had considered making Jo Jo’s 8th birthday party a slumber party, but how I so wasn’t ready. I wondered if the boys were okay, if they were warm enough and if they were actually sleeping and if they missed the dog. Dimly I realized Ivry still had her tutu on, but I was too damn tired to go downstairs and take it off. I had just ten pages of Fates and Furies left. Maybe I could still finish it tonight. Maybe, and maybe, and maybe…
And then I woke up. I’d dozed off. My phone said 11:15. Not so late. I knew Carolyn would probably be texting soon asking for a report. I stood up and stared down at both girls.
They were sound asleep, both mouths slightly open, both snoring faintly. Their heads were still nestled together. Jo Jo’s Hello Kitty nightgown had somehow gotten bunched up around her tummy. I gently tugged it down and stroked her hair.
She looked peaceful, happy. I could see her eyeballs moving underneath her lids in REM sleep and I wondered if she was dreaming about some adventure with her best friend. Her best friend Lily, who doesn’t bat an eye at the fact that Jo Jo has Down Syndrome.
It was inclusion at its best, its most finest, and in October, no less, which is Down Syndrome Awareness Month. But I was too bleary eyed to fully digest this.
I tiptoed out of the room and left them, cuddled together, blissfully asleep.