“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.
Six years ago, when I was pregnant with Teddy, I stumbled across a message board post from a woman who already had a child with Down syndrome who had just learned she was pregnant with a baby with Trisomy 18.
She was beyond devastated and could not, in her own words, believe “lightning struck twice.” Unlike Down syndrome, Trisomy 18 is incompatible with life. She’d already scheduled a termination, but was reaching out into the anonymous ether of cyberspace for support. She was terrified to confide in others, frightened people—especially other parents of kids with Down syndrome—would judge her for making what was clearly a gut-wrenching choice.
My heart ached for this woman. I couldn’t imagine having to make such a painful decision and not be able to reach out to others for fear of being condemned for it. She was mourning the loss of her child while at the same time feeling like she had to skulk around in secret to terminate.
I thought about her again two years ago, in 2013, when North Dakota passed legislation banning abortion for a “genetic abnormality or a potential for a genetic abnormality”, including, of course, Down Syndrome. I was angered by the law, and wanted to speak out, but was afraid. I’d written before about how if I knew Johanna had Down syndrome I would have terminated and the amount of hatred spewed at me was jaw dropping. I wasn’t eager to encounter that onslaught again.
Then, a couple weeks ago, I learned Ohio was poised to pass a similar ban, specifically prohibiting abortion for Down syndrome. I was horrified and decided I wanted to take a public stand. The result is an essay published in Yahoo last Tuesday. https://www.yahoo.com/parenting/if-i-knew-my-daughter-had-down-syndrome-i-would-128029396977.html. It quickly went viral, perhaps in part due to its provocative title (which, by the way, I did not write) and even garnered international attention http://www.dailymail.co.uk/femail/article-3218673/Mother-young-girl-syndrome-says-terminated-baby-diagnosis-pregnant-fights-protect-abortion-rights.html I was deluged with responses. I was heartened to get so many messages from people thanking me and offering their support (including many folks in the Down syndrome community) but was not surprised to also be bombarded with virulent, hate-filled responses. Some people wished me brain cancer or told me I deserved to be locked in a basement and drowned (eyebrow raising since they claim to be so pro the sanctity of life). Others threatened to call CPS to take my children away.
I felt oddly removed as I read these missives. Part of it is I’ve developed a very thick skin over the years. Part of it was I was expecting so much worse. And another part is simply that I adore my daughter so much—and am so secure in her love for me—that I just didn’t care what strangers thought.
But there was one message that got under my skin. It was a woman who spent several paragraphs berating me for wanting to “murder your beautiful, precious gift and publically announce to the world that you wish she had never been born.” (For the record, I never said either.) I rolled my eyes as she pronounced me a “monster” and informed me “Downs’ kids are the sweetest, most loving creatures in the world.” The clincher came at the end: she wrote that she was “thankful” that my daughter would never be able to read, and thus understand what I’d written.
So I have a response for her, and for others as uneducated and unenlightened as her.
Jo Jo can read—beautifully. Most people with Down syndrome are able to ultimately read at a fifth grade level, and with all the advances in early intervention and special education, kids in Jo Jo’s generation will most likely have decoding and comprehension skills that are even higher. But that’s irrelevant. My daughter knows that I love her with all my heart. She is bright and compassionate and kind and I know that when she is finally able to read this, she will understand. She will be gracious enough to forgive me for my original shortcomings, and realize they came from misconceptions and misguided fears. She will realize that I value her as the gift she is. She will also be savvy enough to see the Ohio bill—and others like it—for what it is: the latest salvo by an extremist movement to curtail a woman’s right to choose. She will recognize the hypocrisy of proclaiming her sanctity to life while at the same time slashing federal programs and research designed to benefit her. And above all, she will thank me for valuing her as a woman first and foremost, so much so that I’m willing to speak out to defend her right to determine what happens to her own body.
Jo Jo is, after all, my daughter. She comes from a long line of individuals who have fought hard for women’s rights. My mother marched in Washington, I marched in Washington, and I know one day, she most likely will too.
She is my little warrior girl, and I am beyond proud, of the child she is and the woman she will one day be.
Last week, Jo Jo performed in the school variety show with three of her friends.
I had no idea what to expect. I really, really didn’t. It started out innocently enough: I got a school flyer announcing the variety show, I texted the mom of one of Jo Jo’s best friends, Lily, she suggested I email the moms of all the other little girls in the class to see who wanted to do a dance routine with us.
Two other kids joined. We brainstormed on themes. I suggested Flashdance; if nothing else the girls could hop around in cute little leotards and leg warmers. All the other moms enthusiastically agreed (hey, we all grew up in the 1980s).
We held several meetings/playdates to “choreograph” the dance. Between veggie sticks and Barbie dolls, the girls brainstormed their moves. Jo Jo refused to join in. She sat on the couch, waving her Elsa doll like a conductor waving a baton, watching her friends.
It stung. Here I was, doing something I’d always dreamed and expected to do with my daughter—designing a dance routine for her first grade talent show—and she couldn’t participate. Or really, maybe it was a wouldn’t. I honestly didn’t know. Was it hard for her due to her low muscle tone and lack of coordination? Or was it simply stubbornness?
The other moms looked at me quizzically. “Let her be,” I said, with more confidence than I felt. “I think she’ll be different when she’s actually on stage.” Last fall, I’d signed Jo Jo up for an adaptive dance program in Milford, where she’d learned ballet with other children with disabilities. For most of the classes, she sat on the sidelines and refused to move, but when show time actually came—a Nutcracker performance with members of the New England Ballet—she got right up on stage and followed along with the rest of the kids.
Sure enough, when the dress rehearsal came, Jo Jo unleashed a slew of her premier danseur moves. She was more than game to follow the lead of her friends. Trouble was, she didn’t quite get some of the niceties of the routine. Like she was supposed to dance NEXT to the girls in a straight line, not facing right in front of them. Or that she was supposed to move OUT of the way when Lily did her cartwheel or Leila did her pirouettes. There were her three little first grade fellow dancers, earnestly linking hands and doing a kick line, while Jo Jo flapped and thumped around like a drunken Rockette.
We all agreed that now Jo Jo was back in the mix, we needed to schedule another practice. Problem was, when we gathered to rehearse, Jo Jo reverted back to her old ways. Nothing—her favorite fruit snacks, her Elsa doll, even some glittery hot pink scarves—could convince her to join the other girls. Forget it, her expression clearly said. If it’s not the big time, I’m not wasting my time.
I was ready to give up. As much as I wanted to see Jo Jo in the variety show, I worried she was too much of a loose cannon to perform. Images of her careening off the stage as the other girls dutifully leapt to “What A Feeling” invaded my brain. But my friend Carolyn (Lily’s mom) stepped in. “Next thing I knew, she was on “stage”. “Pretend I’m Jo Jo,” she told Lily, Leila and Sidrah, who all looked at her as if she was nuts. Undaunted, she took her place with them, squatting down to their height and twirling around. I was impressed, not only by her knee strength but by her perseverance. I was about to give up and it was my kid.
Every time they did a new move, she just stood there, and when they moved uncertainly around her she stopped them and said, “I’m Jo Jo. What do you do next?”
The first few times, they just stopped and hesitated like little baby deer caught in headlights. Finally, someone would chirp, “bring you in!” and they’d grab Carolyn’s arm and guide her through the routine. Carolyn had them repeat it, again and again. Each time, there was a little less hesitancy as they reached for her arm and brought her in. By the end, they were doing it instinctively, you could tell. It looked natural, not forced.
“Thank you,” I said simply to Carolyn when they were finished. It was one of those times where there was so much to say there was almost nothing to say. She’d done in fifteen minutes what it had taken disability rights activists more than fifty years to achieve.
She shrugged. “No problem,” she said casually.
The next evening everyone showed up to the variety show in their favorite Flashdance-esque finery, which included cut up Hello Kitty sweatshirts, leg warmers, huge side ponytails, and eye shadow and lip gloss. The girls were eager to help Jo Jo practice her moves, and they pulled her over to the side, arms wrapped around her and giggling.
I shepherded everyone backstage, where they had the four girls sit on seats waiting for their turn.
I noticed Jo Jo was trembling. Whether it was from cold, or stage fright, or just uncertainty at all the bright lights and people, I didn’t know. I was about to go over to her when her friend Leila reached over and grabbed her hand. “It’s okay, Jo Jo,” she said, and as the backstage techs motioned the girls up to walk on stage I watched as she gently guided my daughter out, without me.
They performed. And they rocked it.
When you have a child with a disability, you’re bombarded with information about inclusion. Words like the Individuals with Disabilities Education Act (IDEA) and Least Restrictive Environment (LRE) and Free Appropriate Public Education (FAPE) are bandied around like canapes at a cocktail party.
But inclusion is so much more than following the letter of the law, or making sure your child spends at least 80% of their day in the regular education classroom. It’s a philosophy, a way of life, a feeling. It’s watching your daughter dance with her friends in matching Hello Kitty sweatshirts, holding hands and giggling. It’s knowing that your daughter’s with a group of girls who know she has a disability, and are sensitive to it, but at the end of the day just want her to participate, no matter her limitations.
And it’s knowing that when she needs it, they give her a hand, not condescendingly, but as equals.
They music faded. The audience went wild. The girls started to skip off stage and then remembered to take a bow. Jo Jo still stood in the center of the stage, uncertain but dutifully clapping her hands and cheering.
I wondered if I’d have to go on stage to retrieve her. But before I could move, I saw Lily skip over to her as the curtain dropped and I heard her yell, “Jo Jo, we did it!”
Leila and Sidrah raced over, and for a moment all four were huddled in a mass, jumping up and down and laughing. Then they all bounded through the curtain into the depths of the backstage. I watched four little ponytails disappear, knowing that I didn’t need to rush after them to check on my daughter. Her friends would make sure she was okay.
Dear Jo Jo,
This past Friday was a very big day. It was your birthday.
I woke up at 6:30 in the morning to a familiar sound: you singing. I can’t always make out the lyrics, but I usually lie in bed listening to you for a few moments, savoring your voice, until I drag myself out of bed to start my day. But this morning was a bit different. I heard the sound of footsteps and giggling and then I heard two little voices screaming at the top of their lungs, “Happy birthday, Jo Jo!”
When I came into your room, you were sitting on your bed like the Queen of Sheba, Teddy and Geoffrey embracing you on either side and Ivry standing in front of you wagging her entire body back and forth like a giant swaying sausage on four legs.
It was an heartwarming picture, but it only lasted for a minute. Geoffrey decided he wanted to sing you happy birthday in Hebrew. Teddy disagreed. They started arguing, someone pushed someone else off the bed, and then someone trampled on poor Ivry’s paw. But there you were, in the midst of all the screeching and barking, determinedly belting out “Happy birthday dear Jo Jo.”
Why not? It was, my darling, your moment.
I’ve been thinking a lot about your actual birthday recently. There was a big kerfuffle on social media about a month ago, when an Armenian mom allegedly abandoned her baby with Down Syndrome. One of my editors asked me to write an open letter to her. I did, here: http://www.womansday.com/sex-relationships/family/ruzan-badalyan-open-letter. Writing it was hard. I don’t often like to think about those first few days when you were born, although I have to say, I remember them as vividly as if they just happened a week ago. I don’t like thinking about that time, it was so scary and I was so afraid, not just because of your diagnosis but because I was so terrified I’d never truly able to love you and feel bonded with you.
Well, that all happened, of course. It took time, but we got there. I try to be as open about it as possible, because I want other moms to know they’re not alone in what they’re feeling. Post partum depression happens to about 12 percent of new moms, after all. And while I got some nasty comments, I was heartened by the women who came out of the woodwork to email me letting me know they’d had the exact same experience.
But I also heard from other women, moms who live in other parts of the world that aren’t as progressive as the United States, moms who are struggling with the shame and stigma of giving birth to a baby with Down Syndrome. They live in countries that don’t have the resources and support that you and I both had to get us through the first few years. One mom told me she hasn’t gotten one baby present for her daughter, who’s six weeks old, which broke my heart. As hard as those first few weeks after your birth were, I remember all the designer clothing and monogrammed diaper bags and personalized baby books that arrived. Someone sent a fur lined sleeper that was the talk of the Columbia NICU. You were five days old and already achieving your fashionista status!
When I took you home from the hospital at 2 ½ weeks old, you had appointments already lined up with some of the top geneticists and feeding specialists in the area. You were registered for Early Intervention. I had info for Down Syndrome support groups, general new mommy support groups, and just about every baby centered music and gym class you could imagine.
I can’t imagine what I would have done if your grandparents, instead of insisting on coming to see their new granddaughter immediately, insisted I put you in an institution. I remember getting annoyed at Nana for shoving swim suit catalogues in front of my face when you were only 3 weeks old. She wanted to know if I thought your scar from intestinal surgery would have faded enough by summer that you could wear a bikini. A bikini? For a newborn? A newborn with Down Syndrome? I thought Nana had completely gone off her rocker. But you see, in Nana’s mind you weren’t just a baby with Down Syndrome. You were her first grandchild, after all, and what Jewish grandmother in her right mind wouldn’t insist her beloved granddaughter wow the beach in a Ralph Lauren bikini?
So now, looking back at your birth, and all the wonderful things that have happened since then, I can say that on your birthday I’m grateful for how far we’ve come as a society in terms of accepting children with disabilities. Grateful for the fact that tonight, in the midst of an unexpected snow storm, eleven other little girls from your class showed up to celebrate your birthday with you. Grateful that you have friends like Lily and Madison and Abby and Leila who see you as an equal and push you to do things that you sometimes are hesitant about, like reading and dancing and playing hopscotch.
Grateful for the fact that you performed in a performance of the Nutcracker this past December with the New England Ballet troupe and other kids with disabilities. Grateful for your special ed teacher at school, who spent two days observing you on the potty and “collecting data” so she could figure out how to get you to go on your own without any extra assistance. (I thought she was joking when she told me but she wasn’t—she mapped out 20 steps you’d need to master to go potty by yourself. Who knew?). Grateful that you go to Sunday school at a synagogue that automatically assumes you’ll be having a bat mitvah and that part of their job is to make sure you get there.
As hard as this road is sometimes, and as hard as I’ve had to advocate for you, I can’t imagine what it would be like if parents hadn’t started fighting this fight a half century earlier.
I’m thankful that you’re growing up in a time where your role models can be amazing women with role with Down Syndrome such as actresses Lauren Potter or Jamie Brewer or long distance swimmer Karen Gaffney. It’s no longer a question of if you’ll go to college, it’s where you’ll go. It’s no longer a question of if you’ll live to adulthood, but what you’ll do with your life when you get there.
That doesn’t mean there’s not a dark side. There are still cases like Ethan Saylor’s http://www.cnn.com/2013/08/29/opinion/perry-down-syndrome-death/ that highlight the social injustice people with disabilities still face. I worry about the fact that you have 20 times the risk of developing leukemia as a typical child, or the fact that you have a one in four chance of showing signs of Alzheimer’s in your 40s.
But part of learning how to be your mother has been my learning how to accept what I can and cannot change. I can’t increase your IQ by 50 points or assure you’ll live a long life and make sure you can live independently. I can just do everything in my power to make sure I’m giving you the tools to make sure you’re the best Jo Jo that you can be.
It’s 2015. The world is your oyster, my darling. Embrace it.
Last weekend, the kids went to a fair. And came home with balloons, which is always a recipe for disaster.
I was making dinner when I heard squeals, a loud th-wack, and then hysterical screams coming from the playroom. I raced over to find Johanna on the ground, cradling her head, sobbing, an upturned chair next to her. Geoffrey was standing above her, legs wide apart like a crazed Viking, his balloon rising up from his arm (we’d tied it onto his wrist earlier, so it wouldn’t fly off) like a Raven banner.
“Jo Jo tried to take my baa-oon,” he said when he saw me, by way of explanation.
I knelt down and gathered my daughter into my arms.
“Did you hit Jo Jo?” I asked. She snuffled. She seemed okay; more scared than anything else.
“Did you throw this chair at her?”
He nodded again.
“Geoffrey,” I said sternly. “You DO not throw a chair at your sister. You DO not hit your sister. You could have seriously hurt her.”
“She took my baa-oon,” he said somberly.
“I don’t care,” I said. “When something like this happens, you tell mommy and let mommy deal with it. You don’t yell at Jo Jo and you don’t hit her and you certainly don’t throw chairs at her.”
His lower lip trembled. “I told her, ‘Jo Jo give it back,’” he said.
I grabbed his arms. “Listen to me,” I said. “You cannot hit your sister. You cannot hurt her.” I was beside myself and had no idea what to say. Teddy would never have done that to Jo Jo. Even before he took his first steps he was protective of her and here was Geoffrey, thumping his chest and throwing furniture at her in some form of preschool vigilante justice.
“Time out,” I said.
He went and sat on the steps obediently.
I walked over to him and took a good sniff. He’d loaded his pants again. At almost 3 ½, Geoffrey was still showing no desire to start potty training.
I knelt down. “You need to be kind to your sister,” I said. “The world can be an unkind place to her and it’s up to us to protect her. We don’t treat her with disrespect and anger. We treat her with love.” I paused. I hadn’t meant to say all that and I wondered if that was too intense to say to a 3 year old.
He just looked at me.
I sighed and went into the kitchen to order more diapers from diapers.com.
A couple minutes later I smelled something. I looked down. Geoffrey was standing silently in front of me, holding his balloon. Obviously he’d decided to take himself out of time out
“I want to give Jo Jo my ba-oon,” he said.
“Really?” I asked.
“Yes,” he said, nodding his head.
I started to sniffle a little. “Geoffie, that’s really lovely of you,” I said.
“I know,” he said modestly, and then, “take it off,” extending his wrist.
I slid it off and he proudly walked over to Jo Jo, extending the balloon like a peace offering.
“Thank you,” she said simply.
“You’re my sister, Jo Jo,” he said. “I love you.” And then, “Mwah,” pressing his lips against her cheek in an open mouthed kiss.
They both stood there, beaming at each other. It would have been a beautiful moment if there hadn’t been that stench. I ran to get the diaper wipes.
I thought about it all during dinner and while I gave Jo Jo her bath. Geoffrey and Jo Jo have a wary relationship. Geoffrey plays more with her now than Teddy does, but they also fight more. A lot more. Somehow even when Teddy was younger he never got upset that Jo Jo took his toy and bonked him with a board game or refused to follow his orders during dress up. But Geoffrey plays hard and fights harder. The two of them can go from a peaceful playroom coexistence to an all out battle involving hair pulling, scratches and even a strategic bite or two, all within 30 seconds.
But on the other hand, there were a few times when Geoffrey had shown a protective streak. Last spring, my nanny, Ingrid came home from the park stunned. Another child had been bothering Jo Jo. It hadn’t seem to have sprung from cruelty—it was pretty clear the kid had his own sensory and/or developmental issues. He’d been following Jo Jo around, banging into her and otherwise invading her personal space, much to her annoyance. Then he’d pushed her, hard.
Ingrid didn’t even have time to react before Geoffrey flew onto the scene, landing on the boy—who was twice his age and twice his size–with a flying leap and pummeling him with his little fists.
It was pandemonium. Ingrid pulled him off. Geoffrey was wide eyed and shaking and screaming “no one messes with my sister!” until she finally calmed him down by plying him with cheddar bunnies and a juice box.
It was the talk of the playground—how this toddler in diapers had leapt to his sister’s defense. But I wasn’t sure if it was protectiveness or just possessiveness: ie, no one else could mess with his own personal punching bag.
I hoped it was the former. I really did. But while I was helping Teddy with his bath I heard screaming coming from Jo Jo’s room. I ran in to see Geoffrey on her bed, trying to wrestle his balloon from his sister’s grasp. It seems it had only been on temporary loan and he’d decided it was time to get it back.
I jumped on the bed to intervene. There was a lot of shouting and hair pulling and dog barking as I pulled them apart and then suddenly a large POP! We all stared at the remains of the balloon as it floated down onto Jo Jo’s pink Laura Ashley duvet.
“My ba-oon!” Geoffrey wailed and then suddenly they were in each other’s arms, consoling each other.
Teddy raced in, dripping wet from his bath. “What happened?” he said worriedly.
“Geoffrey tried to take the balloon from her and they got into a fight and the balloon popped,” I told him.
He stared at them. Jo Jo was sobbing, her eyes squeezed shut and little round tears sliding down her cheeks. Geoffrey was hugging her, giving her those same open mouthed kisses. “Don’t cry Jo Jo,” he said, and then, “we can go back to the fair and get another ba—oon tomorrow.”
“It’s okay, Mommy,” Teddy told me. “Geoffie’s taking care of her.”
I looked at my oldest daughter and my youngest son. They had calmed down and were lying on the bed together. Geoffrey had one arm casually thrown around her shoulder, stroking her hair while the other hand clutched his blankie. Their heads were touching and they both seemed at peace. At least for the next 60 seconds.
“Yes,” I said. “He is.”
Today was a big day. Jo Jo started first grade, and Teddy started kindergarten.
A new house, a new school, a new community. It’s hard for me to wrap my head around, even though my kids seem totally unfazed by it. Eating breakfast and chattering about school as if they’ve done it forever.
Walking to the bus stop was huge. There were tons of other elementary school aged kids lined up all up and down the road, standing with their parents patiently.
When the school bus arrived, I watched as my little guy climbed in, his spider man backpack perched precariously on his shoulders.
“Is he in kindergarten?” the bus driver asked and when I nodded he boomed, “all kindergarteners sit in the front!” Teddy looked at him like a deer caught in headlights, his eyes wide. I was ready to get all mama bearish and jump onto the bus to rescue him when one of my neighbors yelled at her 4th grade daughter, “help Teddy out.” I watched as my small son was led to his seat, then the yellow doors closed and the bus drove away with my baby inside.
We raced back to our house, put Jo Jo on her bus and then Geoffrey and I were off, driving away to North Stratfield. We’d been told that the first day of school was a BIG DEAL. All the parents show up to take pictures of their kids coming off the bus, held back by orange cones and school administrators while frantically snapping photos of their little darlings like crazed paparazzi.
We had to park a half mile away from the school. By the time we made it there, and through the crowd, Jo Jo, as befitting a cosseted celebrity, had already been whisked inside. It was unclear about Teddy. He’d left before Jo Jo, and as I watched the buses pull up and unload their small, shrieking cargo, I had a sinking feeling that I was too late.
But when the last bus pulled up and I saw the number eight, I realized I hadn’t missed the boat (er, bus).
“Teddy! Teddy!” I screamed like a groupie, jumping up and down.
And there he was, peering out the side of the bus door, an uncertain smile on his face. I couldn’t tell if it was a I’m-so-happy-to-be-here-smile or Oh-my-god-these-people-are-friggin-nuts-what-am-I-doing-here-grin.
But when he saw me, his face broke out in a huge beam and I knew he was loving every minute of it.
I watched as the principal and one of his kindergarten teachers leaned down to talk to him.
He listened intensely before obediently following the other children through the crowd of teachers into the school.
Then he was gone, leaving me bawling intensely behind my sunglasses.
“First day of kindergarten?” one of the other moms asked sympathetically.
“Yeah,” I croaked.
“He’ll do great,” she said reassuringly. “This school is awesome.”
It’s hard not to worry, though. We’d had a whole tour of the school yesterday. Both kids met their teachers and saw their classrooms, and we met all of Jo Jo’s therapists and her new aide. But while I knew Jo Jo would be getting the red carpet treatment and a lot of attention, I wasn’t sure about Teddy. Kindergarten’s a big place, and he might just get lost in the shuffle.
When the bus pulled up to our stop this afternoon, all the neighborhood kids piled out except for Teddy. This was sort of alarming. “Where’s my son?” I asked the bus driver, who motioned me on. “Teddy!” I hollered in my panicked voice before I saw him, sitting in his seat twisted around talking to the kids across the aisle from him in earnest conversation.
“The kindergarteners don’t always know when to get off,” the bus driver said helpfully.
I watched him for a moment and suddenly had a mental picture of him in ten years, a sophomore on the school bus so busy flirting he forgot to get off at his stop. Then he turned and spotted me. “Mommy!” he said, looking surprised. I wondered if I’d embarrassed him, showing up on the bus like this, but he grinned and raced towards me, grabbing my hand.
“Where’s your backpack?” I asked.
“Oh yeah,” he said sheepishly and ran back to get it.
We walked across the street and back to our house, hand in hand. “How was your first day?” I asked him.
He looked at me solemnly. “It was good.”
“What did you do today?” I asked.
“I played outside, on the playground,” he said proudly. “And I ate mozzarella sticks, for lunch.” And then he was off, telling me in a rush about his day. He’d looked for Jo Jo on the playground, but he didn’t see her, so they must not go outside at the same time. He’d drawn a picture. He’d met a lot of kids, but he couldn’t remember all their names.
I’m guessing in about seven years, he’s going to want nothing to do with me when he gets off of the bus, when the sight of me jumping up and down like a crazed hyena snapping pictures will send him shrieking straight into therapy.
For now, he’s still my little boy with the spider man backpack and light up sneakers who insists on holding my hand, even in public.
Such is life.
Today would have been your 71st birthday.
A couple months ago, Jo Jo learned how to read. At first, I thought she was just memorizing, parroting words back. But one night I took out a Dr Seuss ABC alphabet book. You used to read it to her and Teddy, before you went blind. She hadn’t seen it in a couple years. We started the book, going through the letter sounds, and those first few words she got, “baby,” “bubbles”, and “bumblebee” I assumed were just dumb luck. But by the time we got to “horse” and “hay”, I realized she was actually sounding out each word, struggling through the syllables but reading nonetheless.
I started to cry. It brought back a memory of sitting in your family room when she was ten weeks old, holding her and sobbing because a geneticist I’d just brought her to had opined that her small head circumference boded poorly for her cognitive development. No, there was no research to back him up, but in his anecdotal experience the children with DS with such small heads never learned to read. Or write their names. Or even really to talk.
You sat across from me in the big striped ottoman and said quietly, “She will learn to read.”
“Why?” I asked.
“Because she is her mother’s daughter, and she has your determination,” you said.
You pegged my child right, even at barely three months old.
I wish you could have seen Jo Jo this year, Daddy. She learned to read, to finally write her name, to swim on her own in a pool without the safety of a turtle shell. I can picture you in the pool with her, beaming as she swims towards you, moving backwards slowly inch by inch until she finally paddles across the length of the pool on her own.
And the boys?
The boys are doing great. Teddy has inherited your love for numbers. He’s discovered how to add and subtract, first using his fingers and then realizing he can figure it out in his own head. He’s a little human calculator. I can picture the two of you, sitting on the old ratted sunroom green couch, earnestly discussing why it’s impossible to count to infinity.
Geoffrey has become enamored of puzzles. He will spend hours putting them together, his head tilted at just the right angle to amplify his vision. He loves building things. Legos. Train sets. Forts out of sofas. I look at him, tongue between his teeth in concentration, and I puddle up because it’s so clear that he’s 100% your grandson.
I took all three to Legoland a few months ago. Jo Jo was indifferent, the boys were enthralled. I cried when we walked into Miniland, a room filled with sparkling replicas of New York City icons. I could see you taking my two little boys by their hands and walking them over, patiently explaining the significance behind each landmark: the first time you saw the Statue of Liberty with your own grandfather, memories of going to baseball games at Shea Stadium, the fact that their great great grandparents had entered the country through Ellis Island. They would be excited, their voices rising over each other as they asked questions, and you would kneel down to their height and say solemnly “one at a time please” before hustling them over to the toy store to buy their own little Lego versions of the Empire State Building and White House. There would be more squealing and screaming followed by admonitions followed by ice cream and then we’d return home, where you’d spend hours helping them assemble their masterpieces.
And I’d watch and laugh, thinking, poor Daddy, after years of being forced to play Barbie Dolls with two girls he now has grandsons to build Legos with and take to baseball games and shoot basketballs with. He complains about his back hurting or how he’s too old to be down on the ground wrestling with two little boys but he’s really in pure heaven.
But of course, you’re not here. Teddy asks where you are and I try to explain that you’re in heaven, looking down, that you may not be physically here but that you see us and everything we do. He furrows his forehead and looks concerned. “He’s up in the sky?” he asks, and then, “how many miles away is Pop Pop?”
I say I don’t know.
He doesn’t like this. “500 miles? A thousand.”
“It’s further than that,” I say vaguely.
He frowns. My son wants specifics. A million miles? A trillion?
“Maybe it’s infinity,” he says.
“Yes my love,” I say. “It is.”
He looks pensive. “But where is Pop Pop in the Universe,” he wants to know. “Is he closer to Mars, or closer to Uranus?”
At times like this I want you around more than anything. I know you would cuddle with my small son on the couch and explain the metaphysics of the afterlife so much better than I ever could. You would discuss the planets and how they turn and the concept of the Milky Way and all the different galaxies. The two of you would sit side by side talking earnestly—carbon copies of one another—and I would see by the slight smile at the edges of your mouth that you are relishing the way your first grandson’s mind works. It is, after all, an analytical mind much like your own.
I miss you so, so much, Daddy.
Happy birthday, wherever you are.
Jo Jo turned six today.
Her birthday always evokes a maelstrom of emotions for me, most bittersweet. It is hard for me to acknowledge that her birth was both the most wonderful and the most wrenching day of my life.
But today, when I walked into her bedroom and saw her lying on her bed, sunlight in her hair, watching her languidly stretch, I had to wonder what I was so afraid of six years ago. She blows me away with her loveliness.
In no short order, all of the things I am grateful for.
I am grateful that she is learning to read. She knows all her upper case and lower case letters now, and all her letter sounds. She is beginning to recognize sight words. We fully expect her to be reading by the end of the year.
I am grateful that she is so beloved at school. I was apprehensive when she entered kindergarten. I didn’t know how the other kids would react. But when I see her walking down the hall, holding hands with two other little girls, when I hear about how her other classmates cheer when she stands up and answers a question, when I get emails from other moms saying their daughter is dying for a play date, I realize that inclusion really works. And it is a beautiful thing.
I am grateful for swimming. She walks unsteadily still on land, but in water she is a little nymph, moving gracefully through the pool and I can only imagine how weightless and airy she feels.
I am grateful for her team at school, who have pushed and encouraged her much farther than I even would. I am grateful for the school psychologist, who, after having done cognitive testing, said, “Don’t pay attention to the number. Jo Jo has so much more potential than that.”
I am grateful for her little brothers, who make a point of unwrapping her presents for her when she struggles with the wrapping and then tenderly hand her each gift like they are the Crown Jewels.
I am grateful for the Nutcracker, and Barbies, and Mommy-and-Daughter lunches at tea houses.
Most of all, I am grateful for all the love constantly being bestowed on her. Today when I walked into school with her birthday cupcakes, she was hugging a baby doll, a gift from one of the school administrators. When I walked into her office to thank her, she said simply, “Thank you. We are just so lucky to have her here.”
She is beloved, she is adored, and most importantly, she is thriving.
Happy birthday, my darling.
In an apparent suicide attempt, Ivry overdosed on a 3.5 pound bag of chocolate chips from Costco this past Sunday morning.
Now before you all freak out, I just want to reassure you—she’s totally fine.
But still, when the family dog attempts to (literally) bite the big one—well, it’s an enormous wake up call. Clearly, our canine is experiencing some issues.
Is she going through a midlife crisis? Is she freaking out about her new silvery gray muzzle? Have those snide comments about her girth taken a toll on her self-esteem? Does she sit on the faded, ripped green leather couch in the sun room scratching at her ears thinking, “my grandmother was an award winning agility dog, while I’m just a fat suburban house pet?”
(Ivry and I are roughly the same age—she’s seven, or, in dog years around 42—so excuse me for projecting a bit.)
The facts are as follows:
I brought the boys home after dropping Jo Jo off at Sunday school. As soon as I walked into the house, I knew something was up. Ivry was prancing around on all fours snorting and pawing like a crazed bull in heat, which, given her age seemed unlikely, but I figured maybe she was having a hot flash.
She was so hyper we brought her outside, where she began racing up and down the lawn like she was on speed. The boys tried to engage with her, but Ivry refused to play ball, literally. She scampered around, banging into trees like a drunken sailor.
And then she started puking. Copious amounts of diarrhea-colored puke all over our recently seeded front lawn.
The boys went crazy. “Ivry’s pooping! Ivry’s pooping out of her mouth!” they chortled as I raced inside the house so I could call the vet.
When I stepped into the family room, I saw a sight that froze my heart:a formerly gigantic 56 ounce plastic bag of chocolate chips, sitting on the floor, ripped into shreds. A couple small gobs of brown were left on the carpet, but it was pretty clear—the dog had devoured everything.
“Oh my god,” I said, staring at the mess. Then I realized the pantry door was open. Ivry had managed to paw her way in and had treated herself to a morning of binge eating. Two half eaten loafs of bread lay on the floor as evidence.
“Ivry, what were you thinking?” I asked my agitated dog, who was pacing the floor, clearly in the midst of chocolate induced hallucinations.
She looked at me wild eyed and vomited on the carpet.
I started to panic. I had to be back at Sunday school to pick Jo Jo up and then I had to give a presentation about Down Syndrome to a group of bar mitzvah candidates. Chocolate’s extremely toxic to dogs. Ivry had devoured half of a chocolate cake almost three years earlier and emerged unscathed, (http://hallielevinesklar.com/2011/02/26/jo-jos-birthday-party-and-how-it-went-to-the-dogs-literally/) but this was clearly more dire. I imagined returning with my brood later that afternoon, only to be greeted by the sight of Ivry lying on her back on the floor, paws frozen in rigor mortis. The kids have had to go through a lot this year. I didn’t want to add the death of the family dog on top of it.
So I did what any desperate suburban housewife does in this situation—I called my soon to be ex husband and begged him to take her to the vet.
He called back an hour later. Ivry would need to be hospitalized for her attempted overdose, with treatment involving emergency IV fluids, charcoal administration, and stomach pumping, all for a grand tune of between $1200-$1800.
“Are you sure?” I kept asking the vet. “It seemed to me that she puked most of it back up.”
“I have never, ever seen a dog consume so much chocolate before,” she said flatly. “Never. It’s remarkable that she’s still standing.”
I sighed and gave her my credit card over the phone.
That whole afternoon, I couldn’t stop thinking about my dog. Was Ivry perhaps so depressed about all our recent household changes that she’d eaten an entire bag of chocolate (and almost two bags of bread) in an attempt to self medicate? Was this a call for help? Or had she secretly plotted a suicide attempt in an effort to reunite her humans in a smelly vet hospital waiting room, aka Parent Trap?
“I don’t think so,” my sister said when I called her after the kids were in bed. “She’s just a dog. She smelled chocolate and couldn’t control herself.”
Still, I spent the rest of the night eating my way through a tin of my kids’ leftover brownies and bawling over old puppy pictures of Ivry on the internet. Memories flooded back. Her third night at home, when she escaped Houdini like from her crate only to appear covered in poop on our bed. Those sub zero January nights lugging a 16 week old puppy down the elevator of our NYC apartment so she could make wee wee. That evening when she was bored and decided to eat part of our living room wall. The fateful night before we moved to suburbia when Ivry came down with a mysterious raging fever and had to be hospitalized for thousands of dollars at Animal Medical Center.
I called at 9 pm to check in on her.
“She’s fine,” the nurse said brightly. “She’s just lying here, looking at me.”
I wondered if all her fat had acted as a buffer to absorb the chocolate.
“Can I Skype with her?” I asked.
The nurse was silent for a moment. “Why we’ve never had that request before,” she said. “Unfortunately, we don’t have Skype here, so no, I guess you can’t.”
“I miss her,” I said, tearing up. “Can you at least put the phone to her ear so she can hear my voice?”
“Our phones don’t reach that far,” she said warily.
The next morning, the newspapers were filled with news of Philip Seymour Hoffman’s drug overdose. But thankfully, unlike certain aging celebrities, my dog survived. I picked her up the next morning. She was definitely subdued. I couldn’t tell if her mood was pure melancholia or simply exhaustion from having spent the whole night being force fed charcoal. She seemed slimmer, probably due to the fact that she’d essentially undergone a canine colonic for the last 12 hours.
We passed the newly opened Dinosaur Barbeque on our way home. I debated stopping. Maybe Ivry wanted a side of ribs after her ordeal? Then I nixed the idea. It seemed the equivalent to bringing an alcoholic to a bar immediately after they’d been discharged from the Betty Ford center.
Ivry’s been home now for almost 48 hours. That first night, she was on doggie lockdown. She was only allowed to eat chicken and rice and I watched her like a hawk (although at one point I caved in and shared a chocolate chip cookie with her. I ate the chocolate chips, she ate the white parts.) The kids have been instructed to keep pantry doors closed and to no longer feed her from the table. The point is, whether the overdose was accidental or deliberate, the dog’s well on her way to becoming morbidly obese. This binge-until-you-burst mentality has got to stop.
Still, I can sympathize. As another middle aged woman going through some major life changes, I’m well aware of the urge to overeat when you’re feeling down in the dumps and stressed. I’m on my way to Salt Lake City for a work related trip now, but when I return Ivry and I are going on a cleanse. Plenty of fresh healthy food and long runs to keep our spirits up so we don’t self-medicate with tins of brownies or fresh baked cookies or bags of chocolate chips.
And if that doesn’t work, I’m sure there’s a canine 12 step program somewhere. Or doggie rehab.