Posted by: Hallie Levine | June 27, 2017

Why This Photo Makes Me Cry

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There’s a photo of Jo Jo, in her school yearbook. She’s standing, surrounded by the other little girls in her class. She’s full and center in the picture, eyes wide, beaming, her blonde hair fluffed out in a golden haze around her face. She looks radiant, a beautiful gamine resplendent in her Betsy Johnson leggings and Ugg boots. If someone had shown me this image the night after she was born, as I paced up and down the corridors of the NICU in shock and disbelief, my tears of despair would have turned into tears of gratitude. Because there she was, my daughter, strong, fearless, self-confident, exactly as I’d always imagined.

Today, I look at this photo, and it breaks my heart.

 

It breaks my heart because a year ago I would have looked at her and seen the possibility, the beauty of inclusion, my gorgeous little girl surrounded by Abby and Leila and Audrey and all of her other BFFs. She’s so natural standing there, totally in her element. She knows she belongs.

But now, in the current political climate, it’s so horribly different. Trump care will most likely be passed, and when it does, all her hope for a future will be gone. The bill contains over $880 billion of Medicaid cuts. Medicaid not only provides some of her school-based therapies, it provides the only means she ever has of living an independent (or semi-independent) life as an adult. It gives her health insurance and job training and day programs so that she can go out and live and work in the community. But if these cuts go through, there will be nothing for her. She, like millions of other disabled Americans, will sit home and quite literally rot.

I’ve heard horror stories already, from parents of young adults with intellectual disabilities. They graduate from high school at 21 and there’s nothing for them. In Connecticut, Malloy is cutting adult programming right and left. I’d always assumed that when the boys were in college Jo Jo and I would pick up and move to whatever part of the country provided the best services for adults, but now it seems like a cruel joke. The cuts will be felt everywhere, and they will be brutal.

I’ve been fighting as hard as I can, as much as I can. But it’s hard not to feel beaten down and defeated given the current administration. There’s Jeff Sessions as Attorney General, who once claimed that special education students “may be the single most irritating problem for teachers throughout America today.” There’s Betsy DeVos, and her blatant ignorance of IDEA, and her charter schools. There’s Neal Gorsuch, whose ruling against a disabled child was so harsh that even the conservatives at the Supreme Court quickly moved to reverse it. And now there’s the health care bill, with the Medicaid cuts which, in the words of one disability rights advocate I respect, “give the uber wealthy a tax break on the backs of our children.”

When I was pregnant with Jo Jo I would wake up often feeling like I couldn’t breathe, which, in hindsight, seemed to be my body’s way of warning me of what would come. That sensation persisted for the first couple weeks after her birth, when I would start upright in bed, literally gasping for air, feeling like I was drowning. As I got used to the reality of having a baby with Down syndrome, and as I learned about support systems and the fact that yes, there were services available to us, that feeling lessened. But now it’s back, and I often once again find myself pacing the house at 3 am, wondering, why? Why? Why? Why?

She has such potential. Some of her cognitive development has been slow, but she’s been inching her way forward with baby steps. But some of the biggest advancements I’ve seen this year have been with her emotional development, her maturity. I watched her a couple weeks ago, at a birthday party for one of her classmates. It was a nighttime party, watching a movie under the stars, and she was so happy to be there, twirling around in her sundress and greeting her classmates. While everyone else ran around tagging each other and screaming, she sat like a little lady in front of the screen, watching Lego Batman. Occasionally I’d stroll by to check up on her and she’d swat me away, embarrassed, which was, truly, an appropriate reaction for her age. There was one little boy in her class who kept coming up to her to check that she was okay, and she looked up at him, beaming. That night she was talking about him and then totally impromptu she said to me, “Jo Jo loves Mark, Mommy. Jo Jo loves Mark.”

So, so typical, a nine-year old girl basking in the glow of her first crush. I look at her, every night now, proudly showing up her newly pink manicured nails to her brothers or babbling about her best friends, and she has no idea. She has no idea that her world as she knows it could be shaken to the core, irretrievably broken. A couple weeks ago I attended a fundraiser for one of my senators, Chris Murphy. I accosted him after the speech, telling him I was worried sick about the health care bill as the mother of a 9-year-old girl with Down syndrome. “Oh,” he said with a stricken look on his face, and then he said, without me having to say another word, “Medicaid.” He’s on Capitol Hill every day. He’s well aware of what we’re dealing with. He gets it.

She’s still so young, of course. The health care bill may not pass, and if it does, by the time she reaches the age where she’ll rely on Medicaid, it may very well be reversed. Even if that doesn’t happen, her dad and I will make sure that she gets everything she needs, for as long as we can. She has two brothers who will look after her when we’re gone.

And Jo Jo—well, Jo Jo can still fight for herself. Yesterday, when I picked her up from the sports special needs camp she’s doing for a couple weeks, the director told me in astonishment that Jo Jo had managed to scale all the way up the rock climbing wall. “Last year, we couldn’t even get her to put the harness on,” she said, and we spent a few moments commiserating on how much she’d matured over the last year and how far she’d come. But I think about my daughter, my little blonde warrior girl, determinedly ascending that wall with everything she had, low muscle tone be damned.

What’s keeping me together through all of this is the knowledge that above all else, Jo Jo is a survivor. And I know that when it comes down to it, she’ll advocate for herself in a way no one else—even her mother—can.

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Posted by: Hallie Levine | January 10, 2017

Libtards

I don’t have very many hard core Trump supporters left on my Facebook feed. Some of them got defriended in the aftermath of the election, when I got tired of reading rants about seeing Hillary Clinton executed and racist diatribes against Obama. Some of them silently defriended me, I’m guessing due to my own passionate, highly politicized posts. Some I had to block, when they sent me harassing private messages. But as hard as it for me to read sometimes, I’ve tried to keep as many pro Trump folks in my feed as I can. It’s the whole keep your friends close but your enemies closer feeling. Can’t form the resistance if you don’t know what the other side is thinking.

So when I woke up this morning and scrolled through my Facebook feed in those few luxurious moments I steal each day before my kids wake up, I flinched slightly when I read an anti-Meryl Streep missive posted by one of my so-called frenemies. I don’t know the guy who posted it at all, actually. He’s runs an uber conservative PR company, and how he got my name and friended me I have no idea. Maybe he thought I shared his political leanings because I worked for the New York Post two decades ago.

As much as I yearned to write a response, I balked. I’ve found that posting something—even something fairly innocuous—on a Trump supporter’s page can lead to all sorts of ugliness, something I wasn’t sure I felt like dealing with before my caffeine had kicked in. But I ended up writing something. I had sat in bed the night before and cried as I watched Streep’s speech. When she called out Trump for mocking the disabled New York Times reporter, I wept. Like her, it had broken my heart to watch. As the mother of a little girl with Down syndrome, it had grieved me that others didn’t see the cruelty in our President-elect’s taunts—including many parents of children with disabilities.

So I took a deep breath and posted a comment, a heartfelt defense of Streep as the mother of a child with an intellectual disability. A few minutes later, as I was about to go upstairs to wake my kids up for the day, I heard the chiming sound which I knew in my gut meant someone was responding to my comment. Do I look now? I silently wondered. Or do I wait until they are safely off to school?

Dear reader, I took the bait and clicked. And there, right below the comment, was a comment from another woman, with just one word: “Libtard.”

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I was shocked. I’ve heard that word before, of course. It seems many conservatives have no problem throwing that word around when it comes to anyone who’s remotely to the left of them (that’s central for the rest of the world, BTW). I’ve seen it on Facebook feeds, and each time it’s a punch in the gut. Sometimes, when I’ve had the energy, I’ve posted a gentle reprimand, asking them to please not use the word as it’s insulting to people with intellectual disabilities. More often than not, I get an apology and the comment taken down.

But this was the first time I’d seen it used in this context, to attack the parent of a child with a disability. It was clear she’d chosen her words deliberately, carefully picking the one thing to say that would deliver the sharpest sting.

I wrote back within seconds, asking her why she would say that to the mother of a little girl with Down syndrome.

She wrote back almost immediately, telling me to knock the crap off and she wasn’t referring to me.

Then who was she referring to? Empty air?

I wrote back that I found that hard to believe but regardless it was an inappropriate word to use, period.

I waited until the kids were on their respective buses before checking Facebook again. There were no comments. I wondered if I’d shamed her into silence. But when I went back to check the post, it was gone. Mr. Conservative PR man had defriended me. Which, at the end of the day, was no great loss. I wouldn’t have to see his favorite Breitbart articles in my news feed anymore. And my blood pressure probably couldn’t have handled the hate comments that were no doubt being directed to me at that very moment anyway.

I knew I should just shrug it off and get on with things, which included not only a full day of work but phone calls to my senators and Congressman

I posted something on my Facebook page and got a swift reaction. Two of my editors, Louise Sloan and Tula Karas, sent lovely, impassioned letters to Michelle respectfully explaining why they were so upset at her using the word libtard. My mother, bless her heart, actually called the office and asked to speak to either Michelle or her mother—when she explained why, they promptly hung up on her. The comments, which were so full of love and support and we’ve-got-your-back-girl were all that was keeping me from crawling under the covers with Ivry dog and not reemerging until the kids got off the bus.

There’s so much I could say that’s completely un-PC, so I won’t. After all, as my favorite first lady of all time, Michelle Obama, says, “when they go low, we go high.” But I will say, these are the people Hillary Clinton meant when she used the word “deplorables.” How angry do you have to be, how full of self-loathing, to attack a well meaning mother of a disabled child? What about yourself do you hate so much that you feel the need to lash out at everyone around you, including (and especially) the most vulnerable segments of our population?

And while I have rage against them, I’m also feeling very, very bitter towards a group of acquaintances who also voted for Trump. Maybe they didn’t agree with much of what he said, and maybe they held their noses and cast their ballot for him because they consider themselves die-hard Republicans, or they hated Hillary Clinton THAT much, but these are exactly the sort of people who SHOULDN’T be complacent when this ugliness comes out. I know so many parents locally in my Down syndrome community who voted for Trump. Are they so blinded by ideology (which he doesn’t share with them, BTW), or do they simply not value their own kids enough to see that this man and his supporters despise people with disabilities? Just the use of the word libtard is testimony to that. And yes, of course Trump did not come up with that word himself, but he has created an environment ripe for such harassment to happen.

To them, I say shame on you. For all of the Trump voters who aren’t standing up and condemning this hatred, shame on you. You may have voted for him and you may not have liked him, but you have a moral responsibility to stand up and defend those who can’t defend themselves. Which, in this case, is my darling Jo Jo and others like her.

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Posted by: Hallie Levine | October 2, 2016

A letter to my father, four years after his death

Dear Daddy,

I got the kids’ class pictures this past Friday.

It’s always hit or miss when the photos arrive: some years they’re adorable, hair perfectly in place, eyes focused on the camera, smiling. Sometimes they’re messes, with hair spilling out of carefully placed French braids and something—breakfast? Dirt? Dog poop?—mysterious on their sweaters.

This year they were magnificent. All three children outdoors, hair perfectly coifed, smiling. Jo Jo gazed dreamily into the distance. Teddy smiled a mega grin straight at the camera. Geoffrey squinted slightly (he’s so light sensitive after all) and looked pensive.

But I kept returning to the portrait of Teddy. The angle of his face, the shape of his jaw, the way his tongue ever-so-slightly touched the roof of his mouth. I knew, of course. It was impossible not to see. But it was only when I compared it to the picture of you, at the exact same age, staring steadfastly at the camera, that I lost it.

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I can only guess what you were thinking when Grandma forced you into your starched white shirt and tie that morning and sternly ordered you to look straight at the camera. “Look serious” I imagine she said, and you obeyed, which explains, hand cupped under your chin, eyes focused directly ahead.

But if you took away the suit and tie, took away the slicked back hair and the somber expression, it’s there, clearly.

36 years later, meet your doppelganger. A little less nattily dressed, a little more ruffled.

I can only cry when I compare the two photos, obviously. Four years later, on the eve of your death on the second day of Rosh Hashanah, I can only mourn that you’re not there.

The kids still ask about you. They like to look at pictures. “I don’t really remember him,” Teddy confesses, and it’s always that great stabbing feeling in my intestines, but of course, he was barely three, and they forget that quickly. And wise boy that he is, maybe he blocked out the end, when you were blind and helpless and wracked with pain.

Geoffrey says he remembers you, but he was only 15 months when you died, so of course he doesn’t. (He gets upset when I tell him that though, so lately I humor him.)

I can’t tell how much Jo Jo remembers. She’ll remark on you in pictures of course, but I can’t really gauge how much she can conjure up: the feel of your skin against hers as she rubbed her cheek against you, the way she’d grab for your glasses, the look of pure, complete bliss as she snuggled against you in your lap.

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So much happened this year. School plays and ballet performances,

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soccer games and cub scouts,

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pre-school graduations and the first day of kindergarten.

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I cry at these events, because these are things you should be here for, these are things you waited for years for, things you expected to look forward to in your golden age of retirement.

But there’s so much here I’m so glad you are not here to see, too. The discrimination Jo Jo faces more and more; the rejection from summer camps and shamefully booting out of ballet performances. Just last week, she peed in her pants at the Fairfield Public Library when some old fart behind the counter refused to let her use the bathroom because they were closing. I can only imagine the string of expletives you would have unleashed at him. (That was always something I admired about you; you could be calm and level minded to a point, but if injustice sprang up, boy you let them have it.)

I can only imagine what you would say if you saw the circus our country has become; the fact that a man that you always regarded as a glaring buffoon may very well become the next president of our country. The ugliness, the hatred he’s unleashed….in some ways I’m glad you’re not around to see that.

But I’m glad to see you live on in my children, no matter how bittersweet. I see it in Teddy every day, from the way he insists on making his bed, tucking in his hospital corners with surgical precision, tongue stuck out slightly in concentration. Everyone always talks about how much Teddy is you, and of course it’s true: he has your clear, analytical mind, your thirst for knowledge, the obsession with American history (including the ability to recall with amazing clarity the years each President served, who they were married to, and what they did) but I see you more and more in Geoffrey, too. He’s inherited your sheer determination, riding bikes and cutting with scissors and kicking a soccer ball, all things that are made a thousand times harder by his vision impairment, but he perseveres until he reaches them. At his kindergarten open house last spring, standing solemnly in his button down shirt and khakis in the classroom, I was struck by how much he looked like you.

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And of course I see it in both boys, in their moral coding. When they told me last spring that they wouldn’t go to Camp Teepee since Jo Jo wasn’t allowed to return, I cried. It was as if I was hearing their words straight from you.

I see you in Jo Jo, in her stubbornness, her “my way or the highway” attitude, but in her absolute pure kindness and genuine joy in people. And it breaks my heart beyond belief that the one person who was her total champion—the one person who didn’t give a damn about what milestones she made, or how well she read, but just focused on her, his beloved granddaughter—is gone, just when the world around her is becoming uglier and darkening.

You are never coming back. I will never hear your voice saying “little one,” or “now wait a minute,” or “I suspect” ever again. You will not be there for dance recitals and school plays, for sports games and graduations, for bar and bat mitzvahs and college graduations.

But I have to believe that you’re there, in my kids, encoded into their DNA, guiding them as they make their way through an increasingly vicious and turbulent world.

I promise you, they will make you proud.

I love you Daddy, wherever you are.

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Posted by: Hallie Levine | July 20, 2016

The Kindness of Strangers

Earlier this month, when the boys were up in Canada and I had some quiet one-on-one time with Jo Jo, I took her for what she’d requesting for weeks: a man-i-cure.

It is one of my little Jewish Princess’ favorite activities. She got hooked on them last year thanks to her BFF Lily, and she relishes the whole spa experience: picking out her pink (of course) polish, getting her hands rubbed, the lotion, the hot towels. The ultimate cherry on her spa sundae is getting to watch Yo Gabba Gabba on my phone while she gets her nails painted, to distract her so she doesn’t jerk her hand and smear the polish (it usually happens once or twice anyway during the process, much to the chagrin of the manicurist; let’s just say Mommy usually tips well).

She’s also a creature of habit, with a set routine and a set place: the little nail salon on Black Rock Turnpike next to the liquor store, where the staff wear aprons decorated with smiling pink cats and a Cheers-like atmosphere where everyone knows Jo Jo’s name.

So I probably should have known better when I took her to a different salon, figuring we could swing by the Trader Joe’s next door and pick up a few things before heading home and then to the pool. I was thinking about saving time and not about the consequences of altering Jo Jo’s routine. It turns out she was not happy about going into a new place, although she perked up when she got to pick out her polish—this time, a shimmering pink overlaced with sparkles—and got to soak her fingers in lavender scented water infused with hot stones.

But then, when the manicurist started filing her nails, she started squawking, loudly. I’d noticed women looking at her when we came in—not cruelly, but more out of curiosity, as kids aren’t often in this salon—and as the stares continued, I began to cringe. I tried to distract her with cartoons on my phone, and she’d watch for a bit, then let out a blood curdling yelp.

I had no choice but to give her the one more screech and you’re out warning. She was quiet for a while, and then did it again, yanking away her hand and smearing the polish the manicurist had so painstakingly put on.

“This is it,” I said wearily as I stood up and tried to pry her off her chair. “Jo Jo, we’re leaving.”

“You are not!” a voice said indignantly, and I turned behind me to see a brunette woman with horn rimmed glasses shaking her head. “She should stay and finish her manicure. I don’t mind one bit if she makes some noise.”

A panoply of voices filled the crowded room, murmuring agreement that she should stay. “I have three grandchildren—I’m used to it,” one elderly woman said to me reassuringly. “I’m having a bad day; I was thinking maybe I could yell right along with her,” someone else said.

I stared at all the women, stunned. I had just assumed that the glances were all of the she-doesn’t-belong-here-category and take-your-disabled-daughter out of the store category. I’d become so sensitive to leaving at the first sign that Jo Jo was becoming disruptive, after an ugly episode at an Alvin Ailey matinee performance last year. https://www.yahoo.com/news/what-i-wish-i-could-1346673527775286.html But it was the exact opposite. I was surrounded by a group of women who thought it was awesome that she was here.

As the manicurist tried again to paint Jo Jo’s nails, and as my daughter yelped, I watched as two women came over to her and, speaking softly and stroking her hair, coaxed her to sit quietly and not move her fingers over the dryer.

Ten minutes later, Jo Jo was done and I was a mess, putting on sunglasses to hide my tears. But when I asked for the bill and the owner of the salon told me it had been taken care of, I full on lost it. I was bawling and choking out thank yous to everyone in the store, who were now all looking at me as if I were the random crazy homeless woman who had walked in mumbling to herself.

Jo Jo, as always, stole the show. “Thank you! Goodbye!” she proclaimed, flashing her now perfect pink nails to applause as we exited onto the street.

Next door, I sniffled my way through squeezing avocados and picking out just-ripe peaches while trying to process what had happened. Over the last few months, I’d gone into total vigilante mode, trying to police Jo Jo’s behavior in an effort to avoid any more ugliness towards her. It had seemed so often that adults—whether kicking her out of a matinee performance or refusing to allow her into their summer camps—were making clear that for her to be accepted anywhere, she had to perform within typical perimeters. That her disability was okay as long as it was kept in a semi-invisible box, completely divorced from any undesirable behaviors.

But now a roomful of women had shown me that that didn’t always have to be the case, that some people were fine with her just how she was.

It felt freeing, like I’d just been able to throw off the chains of ableism that I had unfortunately been using to hold her down.

As we walked out of Trader Joe’s I saw one of the women from the store. “Thank you again for being so understanding,” I said.

She beamed at me. “Jo Jo is awesome,” she said simply.

I choked up once more and she reached over and encircled both me and Jo Jo in her arms so we were smooshed into one giant kumbaya hug. “You’re a great mom,” she said. “Keep it up.”

“I struggle sometimes,” I confessed to her (all the time thinking how weird it was to be engaging in a group hug and baring my soul in the Trader Joe’s shopping lot). “I want so badly to make sure Jo Jo has all the typical experiences other little girls have at her age, but then I worry if she’s not perfectly behaved and she’s disruptive.”

“Don’t,” she said. “It’s good for her, and it’s good for us adults too. Some of us could use a giant lesson in what it means to be tolerant.”

And with one final wave she walked away, leaving Jo Jo and I with our beautifully buffed nails and the realization that she was completely right.

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Posted by: Hallie Levine | December 28, 2015

Geoffrey’s Bad News Book

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Posted by: Hallie Levine | October 15, 2015

The Sleepover

“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.

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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.

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“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.

She nodded.

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.

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Posted by: Hallie Levine | September 7, 2015

“Thank God She Can’t Read”

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.

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Posted by: Hallie Levine | May 6, 2015

This Is Inclusion

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.

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I shepherded everyone backstage, where they had the four girls sit on seats waiting for their turn.

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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.

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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.

Posted by: Hallie Levine | March 2, 2015

A Belated Letter To Jo Jo On Her 7th Birthday

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.

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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.

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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.

Love,

Mommy

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Posted by: Hallie Levine | September 21, 2014

Brotherly Love

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.

He nodded.

“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.”

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