Party Hat

Elephant in the Room

posted Friday April 29th, 2016

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Each year in honor of National Poetry Month, Center Dance Ensemble — a modern dance company in Phoenix — celebrates with American Voices, short original pieces inspired by poetry, held in the small black box at the Herberger Theater downtown.

The girls and I usually go. Center Dance is run by Frances Smith Cohen, my mom’s long-time business partner, and Frances’ dancers are members of our extended family, familiar faces from Snow Queen (Center Dance’s Nutcracker alternative that includes kids) and sometimes my kids’ dance teachers. In the past couple years, Annabelle has performed at American Voices, in a big group with my mother’s older dance students.

But I was surprised this year when Miss Sally invited my two girls to perform alone. I do not know why we’ve always called her Miss Sally — she’s married and as she’d tell you herself, no spring chicken (let’s just say she and I are contemporaries). But ballet is funny, and Miss Sally was Annabelle’s first ballet teacher when she was 3. She’s had Sophie in class over the years as well.

Sally is retiring from the company this year (I’m hopeful this is a Cher farewell tour situation, but I fear she really means it) and told me that for her final piece, she didn’t want to dance herself, she wanted to choreograph on my girls. Sally is a tough customer so I didn’t let her see the tears in my eyes.

I did give her a funny look.

“Are you sure?” I asked. “Sophie can do it?”

“Sophie can do it,” she replied, meeting my gaze.

Sally is a nice person but not gratuitous. She had a vision and it included Sophie, even though I can’t recall ever seeing a kid onstage during American Voices, and definitely not a kid with Down syndrome. Sally has always had great taste in music; I was pleased that she chose a Rickie Lee Jones song (lyrics count as poetry), and asked another Center Dance member, Brad Speck, to take part in the piece.

Damn, I wish I had video to show you. All I’ve got is a couple photos from tech rehearsal. In the piece, Annabelle plays Sophie’s mom, and Sophie is a kid determined to have her way — along with a big (one assumes imaginary) elephant “over there.” Sally knew what she was doing. It’s the perfect song for Sophie, who has a raging. nagging case of the “Hey Moms.” (“Hey Mom can I have this? How about that? How about that? That? That? That?)

And indulge me for a moment while I tell you how gorgeous Annabelle was, doing jazz choreography just a little out of her upright ballet comfort zone. That softened the blow of watching her in the maternal role, a role I think every parent of a child with special needs and a child without worries will be thrust up their kid someday. Onstage, Annabelle handled it with amazing grace, bemused by Sophie’s antics. Sophie rocked the dramatic aspects of the role and knocked out some pretty great dance moves herself.

My favorite part was sweet Brad in the corner — wearing a gray hoodie (do you know how hard it is to procure a gray hoodie in Phoenix in April? Brad and his husband Chris do now) and an elephant head — waiting to be Sophie’s prize at the end. This, too, was genius on Sally’s part. Sophie will do anything for Brad. (And he, apparently, for her.)

Thank you, Miss Sally, for a lot of years of love and lessons. Don’t make yourself a stranger, okay?

In honor of National Poetry Month — and Rickie Lee Jones, and Miss Sally, Brad, my girls and Center Dance — I want to share the lyrics to Dat Dere.

Hey mama, what’s that there?
And what’s that doing there?
Hey mama, up here! Mama, hey look at that over there!
And what’s that doing there?
And where’re they going there?
And mummy can I have that big elephant over there?

Who’s that in my chair?
And what’s he doing there?
Mummy, up here!
Mummy, can I go over there?
Hey mummy, what is square?
And where do we get air?
And mummy can I have that big elephant over there?

Quit talking!
There’s no more anything here!
Forever to manage to know who and why and where!
Quit that, child!
Sometimes the questions get filed!
And mummy can I have that big elephant over there?

Don’t wanna comb my hair
And where’s my teddy bear?
Mummy, up here!
Look at the cowboy coming there!
And can I have a pair
Of boots like that to wear?
And mummy can I have that big elephant over there?

Time will march
Days will go
And little baby’s going to grow
I gotta tell her what she needs to know
I’ll help her along
And she’ll be strong
And she’ll know right from wrong

As life’s parade goes marching by
She’s gonna need to know some reasons why
I don’t have all the answers
But I’ll try the best as I can
I’ll make him a man, that’s right

‘Cause you give the kid your best
And hope she passes the test
And I find it so hard I taught him well ***
Somewhere though she’s going I betting I never will forget ***
Mummy, can I have that big elephant over there?

Hey why they do that there?
And how you put that there?
Hey mummy, up here! Hey mummy, what that say up there?
Hey mummy, what is fair?
How come I have to share?
And mummy can I have that big elephant over there?

“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” published by Woodbine House, is now available. You can order it from Changing Hands Bookstore or pre-order on Amazon. For more information about tour dates visit myheartcantevenbelieveit.com and here’s a book trailer.


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Party Hat

The Jewish Thing

posted Friday April 8th, 2016

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This is a piece I read last night at Bar Flies, the monthly spoken word series at Valley Bar in downtown Phoenix. In the coming months I’ll write more about the girls’ b’not mitzvah (that’s what it’s called when there are two girls participating) and how the process is working specifically for Sophie. So far, so good. 

A few weeks ago, I took my daughters to a local synagogue for Friday night services.

We don’t typically ring in the Jewish Sabbath at a house of worship. Bacon and eggs at the International House of Pancakes is more like it, followed by a hard crash on the living room couch.

But here we were — a little late, dressed up and awkwardly juggling prayer books meant to be read back to front (because Hebrew is read from right to left).

I didn’t realize I was singing along with the prayers until my younger daughter poked me.

“Hey mom,” Sophie stage-whispered, “how come you know the words?”

“Well,” I whispered back, “a long time ago, I had my own bat mitzvah and–” I stopped, noticing that we were drawing stares, and not only because Sophie had insisted that we sit in the center of the front row.

Sophie is 12 (12 and five sixths, she’ll quickly tell you; she turns 13 in May) and she has Down syndrome. People stare.

My older daughter Annabelle — who is almost 15 and therefore wants nothing more than to be invisible — shushed us both, and we all turned back to the service.

Afterward there was cake and fruit and we chatted with a nice family – a mom, a dad, and two girls about my own daughters’ ages.

“This must be hard for you, doing it all on your own,” the mother clucked, motioning to Sophie.

I looked at her, confused. Then I got it.

“Oh!” I said, laughing. “I have a husband. He’s just not here tonight.”

I toyed with telling her the truth, that earlier in the day I’d invited Ray to come along to synagogue and he’d quickly declined, announcing he was quite certain he’d be turned into a pillar of salt if he dared to step foot in a house of worship.

Instead I stammered something about how he had to work late.

I am fond of telling people that I have a mixed marriage. Ray is a Republican (well, more of a Libertarian), and I am a Democrat (ok, sort of a communist). He likes to camp, I prefer hotels. He is pro-gun and pro-cat. I am neither. He has a PC, I have a Mac. He likes Game of Thrones; I watch Girls.

And he was raised Catholic. In my own defense, I swear to God – or, you know, whoever’s up there – that when we met, I thought Ray was Jewish. You would have, too. We were in our mid twenties, he was an ad salesman at New Times with dark curly hair and glasses. He grew up in Queens! HIS LAST NAME IS STERN.

So kill me. I assumed.

One Monday morning, not long after we’d met, Ray asked what I’d done over the weekend. I told him that I went to my cousin’s bat mitzvah.

“Bat Mitzvah?” he asked. “Huh. Is that for a boy or a girl?”

FUCK.

In the end – rather, at the beginning – it really didn’t matter, because Ray had given up Catholicism long ago and I wasn’t much of a Jew.

I am not sure when he stopped believing – if he ever did believe – but by the time we met, Ray had amassed quite a collection of fossils, which he kept around the house to show to the children of the Jehovah’s Witnesses who came to the door.

I remember my own moment quite precisely. I was in first grade, at religious school, in the middle of making a paper mache replica of the torah when suddenly, it hit me like a bolt of lightning:

“We are doing all this shit for that God person everyone keeps talking about.”

I chuckled quietly to myself, shook my head, and went back to trying to wrap wet newspaper around empty cardboard toilet paper rolls, mostly because I knew that after that we were going to bake challah bread, and I was hungry. Also because I was 6, and did not yet have access to a car.

And so went my Jewish education. It was easier to go along than pitch a fit – and the food was pretty good.

So who cared that our religions didn’t match? Ray and I were married by a judge; our friends read passages by Pablo Neruda and F. Scott Fitzgerald. We walked down the aisle to both Led Zeppelin and Bach.

I like to think that Ray and I have made our own kind of religion as we’ve gone along. For all of our differences, we share a joint belief in more things than you’d guess: the Beatles; annual trips to Disneyland; that giant black dogs are awesome pets; that Rent is the greatest Broadway musical ever; that it’s important to stay up till 2 am on Christmas Eve, wrapping presents and chugging Bailey’s; and that our girls should be raised Jewish.

Up until the kid part, we made it work without much effort.

One night, when I was about six months pregnant with Annabelle, Ray and I were out for pizza and talk turned to religion. I had been avoiding the topic for years. What if he’d changed his mind about the Jewish thing?

He hadn’t. We talked about what it meant to be in a minority in our hate-filled world, particularly our corner of it, in Maricopa County, Arizona. 9/11 was a few months off; we had no idea how hate-filled the world really was.

“I want our children to know they’re Jewish before someone else tells them they’re Jewish,” he said.

I swooned.

Putting the Jewish thing into practice proved more difficult. Neither of us had any desire to partake of organized religion beyond stockings hung with care and the row of candles in the menorah – and so we didn’t.

Until last fall, we still hadn’t come up with a plan to get the girls any sort of formal religious education.

The closest we got was our annual Passover seder, the springtime dinner party held to commemorate the Jews’ exodus from Egypt. These seders have grown more irreverent as the years have passed. Last year’s theme was “Passover the Musical.” We sang some traditional songs; Annabelle played her ukelele; then Sophie and and a friend sang Fleetwood Mac’s “Landslide.” Ray played Metallica’s “Creeping Death,” his own nod to the story of the Jews’ exodus.

Sitting in our backyard with flickering candlelight and sangria (my version of the traditional, terrible Passover wine), surrounded by people we love, I felt almost spiritual. It was just right.

We didn’t need any more than this. Or did we?

With Sophie’s 13th birthday looming, I felt a decision had to be made. To bat mitzvah or not to bat mitzvah? We’d already missed the deadline for Annabelle. We were close to blowing it altogether.

I visited synagogues, interviewed rabbis, got into some fights on Facebook, and ultimately decided to go rogue. We hired a tutor and I’m calling this Our Year of Living Religiously. Most Sunday mornings the girls and I drive to Mesa, where they spend an hour learning prayers and asking questions. They now have Hebrew names. They’ve been to a Friday night service. We have made hamantaschen for Purim, an obscure (and really fucking hard to make) pastry for an obscure holiday.

It feels right. It’s not much, but it’s something. And both girls are loving it. They haven’t even started asking about the party – yet.

That leaves Ray. He had not partaken of any of our Jewish activities until last weekend, when we all traveled to Denver for my niece’s bat mitzvah.

My sister took a different path than mine. She married a guy she met at Charles Pearlstein in the Pines, the summer camp that all the Phoenix Jews (but me) attended when we were growing up. There was never any question about how Jenny and Jonathan would raise their kids. Kate’s bat mitzvah was lovely and traditional. And long.

Ray, Annabelle, Sophie and I lined up on a hard wooden bench at Tempe Israel on a crisp Saturday morning. The girls and I opened our prayer books, back to front. Ray’s book sat awkwardly on his lap. But he rose and sat with the congregation and he was wearing a tie – hell, he was THERE — so I could hardly complain.

A few minutes in, Sophie dropped her prayer book. It made a loud, embarrassing thud and before I could lean over to grab it, Ray had it in his hands. He whispered the page number to her, carefully helping her flip the right spot.

And when he sat down, I noticed he opened his own book.

“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome” will be published by Woodbine House April 15. You can pre-order it from Changing Hands Bookstore and come to my release party May 1 or pre-order on Amazon. For more information about tour dates visit myheartcantevenbelieveit.com and here’s a book trailer.


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Party Hat

What World Down Syndrome Day Looks Like in My House

posted Monday March 21st, 2016

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Today began with a mad dash for an appropriate tee shirt. I was still on my first cup of coffee when Annabelle skidded into the kitchen, on the hunt. I had to explain to Ray what World Down Syndrome Day is. (“You know, like 4/20?”)

This was followed by near-tears as Sophie realized that she can’t wear a “Spread the Word to End the Word” tee shirt — or a tee shirt that says anything else, for that matter. Dress code.

Another battle. I sighed.

I would be lying if I didn’t admit it was a tough weekend. I was reminded more times than I can count that in the course of research for my book, I never did figure out why the brains of people with Down syndrome are structured such that a certain brand of maddening stubbornness is a common trait. Combine that with hormones and you have an almost 13-year-old who refuses to wear a bra (now that she finally needs one), demands a particular and sadly elusive shrimp ball dish at dim sum (very loudly and for 15 minutes straight, maybe longer, I lost count), and hollers “Hey Mom” at me from the back seat pretty much whenever we are in the car — for the duration of the trip.

“Hey Mom, what are we doing next weekend? Hey Mom, what time does our plane leave next month for Kate’s bat mitzvah? Hey Mom, can I have a cranberry juice? Hey Mom, turn up the music. Hey Mom, turn down the music. Hey Mom, change the song. No, not that song. No, not that one either. HEY MOM STOP SINGING!”

“Hey Mom?” she asked yesterday afternoon.

“WHAT?!” I asked, wondering how many times before I drive the car off the road and end it all.

“What should I be when I grow up?”

The kid floors me. In a good way, that time. And within 30 seconds I was annoyed again, as what I considered to be reasonable, thoughtful suggestions (mother’s helper, artist, dancer, teacher, hair stylist, nail tech, lawyer) were vetoed with increasing frustration. But for a moment I was reminded why — at least part of why — Sophie gives me such a tough time.

The world gives her a tough time.

The weekend wasn’t a complete bust. We cuddled, laughed, played with our poodle, tried to make hamantaschen for the Jewish holiday Purim, watched the second half of Pitch Perfect 2, finally bought Sophie new glasses, and I did manage to find some steamed wontons she would eat for lunch yesterday. As we were leaving dim sum, she paused by her favorite statue to do her favorite imitation, and we all cracked up.

I drank my coffee this morning and stared at my Facebook feed — at all the happy photos of beautiful kids and adults with Down syndrome. Ugh, I thought. Another DAY. Every day is World Down Syndrome Day in our house. I’m sick of everything having a “day.”

Sophie appeared at my side, asking again if she can wear a special shirt like her sister (who, unlike Sophie, who goes to a tough public school, attends a charter arts school and can pretty much wear whatever she likes, short of a bikini).

I considered the hard line. Then reconsidered.

“Yes,” I said. “Put on your uniform and you can wear a shirt over it. But they might make you take it off.”

She smiled. They won’t, she told me as she headed off to her bedroom, and what she said as she left made me smile, too.

“Today is not their day, it’s my day.”

“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome” will be published by Woodbine House April 15. You can pre-order it from Changing Hands Bookstore and come to my release party May 1 or pre-order on Amazon. For more information about tour dates visit myheartcantevenbelieveit.com and here’s a book trailer.


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Party Hat

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My dear friend Claire swears that every time she had a fever as a kid, she grew. Claire is quite tall. She might be on to something.

I feel the same about Sophie and Disneyland — but not with height. Every time we go, I think Sophie emerges a little smarter, a little more mature. Or maybe just a little more cunning.

We’ve been more times than I can count, plenty of opportunity to gather empirical evidence. When Sophie was just shy of 5, she made her first real foray into potty training after the promise of Snow White panties in exchange for dry pull-ups. At 7, she showed compassion and maturity by befriending a Disney employee who happened to be a little person, a young man who later admitted to me that he often felt left out and shunned by kids visiting the theme park.

And on our most recent trip, this weekend, Sophie demonstrated a pretty good ability to hold it together when told that her very favorite character would not be appearing at all during her time at Disneyland.

Sophie has been in love with A.A. Milne’s Piglet for as long as anyone can remember — a stuffed Piglet holding a purple butterfly was one of her earliest toys. And while Disney has devoted a corner of the park and a ride to Winnie the Pooh and friends, Piglet has remained elusive. On every one of our trips it’s been Eeyore, Tigger and Pooh in costume. No Piglet. I’ve always been told that Piglet comes out in summertime, and since this trip was later in the year than any we’ve taken (we are wintertime Disney visitors, typically) I thought there was a chance. Sophie thought there was a chance. So did the many Disney employees she encountered on our way into the park.

“Don’t promise!” I mouthed over her head to more than one well-meaning cast member.

Too late. By the time we reached the front counter at City Hall and Sophie received official word that no, Piglet was not coming out this week, hopes were high. There were tears, and one giant sob. But the kid pulled it together with uncharacteristic maturity. Within minutes she’d talked me into buying her not one but two stuffed Piglet toys, one of which she initially intended to give to Pooh but ultimately decided to keep for herself, solving her problem by asking Tigger, Eeyore and Pooh to pose for selfies with her and stuffed Piglet.

Later we returned to City Hall, where Sophie was given the gift a signed copy of all four costumed Milne characters. Not a bad haul.

“Wait,” Sophie asked as we were standing in line at Critter Country, looking serious and eyeing a six-foot tall neon orange and white furry. “Is Tigger really the real Tigger or a person in a costume?”

“Oh my god, Sophie, are you fucking kidding?” I wanted to ask. “You are almost 13. You have to ask?”

Instead I recalibrated quickly, trained over the years, and smiled. “It’s a costume,” I said quietly, so the toddlers in line with us didn’t hear.

Sophie is smart (whatever that word means, I don’t know anymore) and getting smarter all the time. But I would be lying if I didn’t admit that yes, she is hemmed in by the impact an extra 21st chromosome has on her brain. Sometimes it feels to me like she’s running through Jello; she can see where she wants to be but just can’t manage to get there without Herculean efforts. I came home from Disneyland to a thoughtful piece by Amy Julia Becker in The Atlantic about the latest research into medication that might greatly improve cognition in people with DS — and the associated debate. People don’t want to be told that there’s anything wrong with their kid, and I get that. I admire it.

But it’s not that simple. Not for me, anyway, and not for Sophie.

“Hey Sophie,” I asked this morning. “If there was a pill you could take and you wouldn’t have Down syndrome anymore, would you take it?”

She stopped midway through a bite of Cheerios, nodding without hesitation.

“Why?” I asked.

“Because then I would be like Sarah and my other friends.”

There it was — matter of fact, honest, and out there. Painful? Yes. For both Sophie and me.

Here’s the thing. These questions are incredibly tough. The topic is impossible. People with Down syndrome are different from other people. And from each other. Contrary to popular belief, there’s as much of a spectrum as there is with autism. Some people with Down syndrome may not have been able to answer my question. Did Sophie fully comprehend it? Hard to say. I’m not sure I fully comprehend it.

Should I have asked the question? I don’t know.

But I do know that it makes me very uncomfortable when parents and others talk about the limitless opportunities for our kids, about how they can do whatever they want if we just let them. Sophie teaches me new things about herself and what my expectations should be for her every day. She has proved me wrong more than once. But in many ways navigating the world is, in fact, more of a challenge for her than for her typical peers. To look away from that is to do her a disservice.

If only there was a pill we could ALL take.

“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome” will be published by Woodbine House April 15. You can pre-order it from Changing Hands Bookstore and come to my release party May 1 or pre-order on Amazon. For more information about tour dates visit myheartcantevenbelieveit.com and here’s a book trailer.


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Party Hat

For Those About to Rock

posted Sunday February 28th, 2016

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My girls ditched homework and ballet class yesterday for a taste of the rock and roll lifestyle.

Girls Rock is up and running in other cities, just getting started in Phoenix. This weekend the fledgling group sponsored a one-day mini camp, a precursor to a week-long camp to be held here this summer.

The premise is simple. There aren’t enough women in rock bands, so why not start girls early, getting them comfortable with instruments and music and, more important, their voices? And not just their singing voices. This is about empowerment, expression and individualism.

It’s nothing short of awesome, both in theory and practice.

After a few hours, parents were invited to watch four bands perform. Each band had written a complete song. Annabelle played guitar; I caught a lyric from her band’s song, growled again and again: “We are not your perfect girls! We are who we want to be!”

Afterward, I saw her exchanging phone numbers with her bandmates.

Sophie was on vocals. Her band’s name was “Sassy Fox in Fuzzy Sox.” She had a blast, doing her signature splits at the end of the song. (Of course.)

I almost didn’t sign Sophie up. I’m trying to find Annabelle things to do that are just hers. And I worried that the last thing the Girls Rock organizers needed during their event was to deal with accommodating a kid with special needs. But when I pulled up the forms to register online, I reconsidered. Sophie loves to sing and perform. Was there a way to include her that would allow Annabelle and the other kids to do their thing, too?

I think there was. I sent Sophie’s nanny along as an extra volunteer, and the organizers made sure to put my girls in separate bands. I’m certain Sophie required a little extra TLC even with the nanny there, particularly with her sensitivity to noise. Apparently some headphones and a couple extra-awesome volunteers took care of that.

The best part, from what I saw, was that Sophie was included but no one made a big deal out of it — she was simply a member of the band, singing her heart out.

You can’t get any more rock and roll than that.

“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome” will be published by Woodbine House April 15. You can pre-order it from Changing Hands Bookstore and come to my release party May 1 or pre-order on Amazon. For more information about tour dates visit myheartcantevenbelieveit.com and here’s a book trailer.


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Holiday in Havana

posted Friday February 12th, 2016

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I’m barely back, but it already seems like a rum-soaked dream — seven days and nights in Cuba, a breathtaking, heartbreaking, gorgeous, crumbling, humbling place. An incredible trip.

As our 40th birthdays approached, my best-friend-from-second-grade Amy (I know, it’s confusing) suggested we go on a trip to celebrate.

That was almost 10 years ago. We never went anywhere.

With 50 staring us down, we decided to get busy — and head south. Tourism is at a fevered pitch in Havana, as mending relations with the U.S. threaten to bring capitalism — and hoards of Americans — to Cuba. So far, so good: Upon our arrival in Havana in January, there wasn’t a Starbucks in sight, and while the city bustled, it was hardly too late to experience the real thing — the 40s and 50s-cars (“American car!” as the cab drivers bragged, beautifully preserved on the outside and not-quite-so on the inside), the gorgeously crumbling architecture and, sadly, some pretty intense poverty and deprivation.

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Without getting too confusing, there are currently two ways for a typical American to get to Cuba: enter through Mexico or Canada; or join an educational tour. We did the latter, hooking up with the amazing Tom Miller, a Tucson-based writer best known in this case for “Trading with the Enemy,” a book he wrote in the early 1990s after spending 18 months traveling Cuba, getting to know it in a way few (if any) Americans were able to do at the time.

To be honest, I cringed at the idea of an organized tour (most of the 21 people on our tour — I wouldn’t go on one bigger — also self-identified as “non organized-tour-people”) but I was so glad we took that route. Tom has been returning to Cuba for years, his connections are unrivaled, and his line-up for Literary Havana was pitch perfect. I wanted to pinch myself — every day I thought, “Did Tom crawl in my head and plan this trip just for me?”

We visited a synagogue, talked to a documentary filmmaker, watched a theater troupe practice, toured Muraleando, a non-profit devoted to arts instruction for underprivileged kids — and so on. We sipped wine over lunch while poets read, wandered around Barrio Chino (Havana has a Chinatown!), checked out Hemingway’s bathroom (great shower curtain) and hung out by his empty pool. We also saw a remarkable contemporary dance troupe called Danza Espiral that we all agreed was one of the best we’d seen anywhere. It was awesome.

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IMG_7440An important caveat, key in surviving an organized tour: Heads turned the other way when Amy and I went rogue, which happened a few times. We skipped the art museum tour and spent a day wandering around Old Havana, studying the latest Fodor’s, hitting up coffee shops, an outdoor antiques market, and an incredible print studio/gallery. After an entire week (no kidding) of nagging the hotel concierge, scored tickets to the Ballet Nacional de Cuba. We also took in a show at the Tropicana — kitschy, hilarious, and (consider yourself warned) pricey.

(One place we didn’t get to, either on our own or with the group, because it was closed was the national art school. It’s on my list for a return visit. Another: Fabrica de Arte Cubano — a giant disco/art gallery/so-much-more that was also closed.)

Our group met up in Miami (there’s a great hotel in the airport — I highly recommend it) and took a charter to Havana. We waited an hour to deplane when we got there, and when we left Cuba, that plane was delayed by several hours. But by then, we were accustomed to waiting. A week of Cuba — businesses unexpectedly closed, electricity inexplicably off, the poet your group was supposed to meet up with MIA — was charming. A few more days and I would have gone bonkers.

While in Havana, we stayed at Hotel Nacional de Cuba. It is old, giant, picturesque and a little decrepit unless you are on the sixth floor, reserved for dignitaries and other VIPs. The patio is elegant, overlooking the water, and as in most places in Havana, there’s usually live music. The bartenders were kind enough to warn me about the quality of the tequila when I tried to order a margaria. I settled into a week of rum and don’t ever need to drink another mojito, though there was one pina colada at a rest stop (of all places) that I’ll never forget.

A block from our hotel is Hotel Capri, recently refurbished and once a mob favorite. Parque Central in Old Havana also comes highly recommended.

We spent three nights in Havana, then headed for the coast, to a port town called Matanzas and then Varadero. Matanzas is definitely off the beaten path — and worth the trip. We stopped by a book-making studio called Ediciones Vigía and watched artists piece together incredibly intricate, beautiful poetry books with a rare commodity, paper. From there it was on to the Pharmaceutical Museum – a perfectly preserved, extravagant Nineteenth Century pharmacy once owned and operated by a Dr. Triolet.

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We stayed in Varadero, a beach town known for huge, all-inclusive resorts. We stayed at one. I don’t recommend that — I would have preferred to poke around the tiny town or score digs at the Xanadu Dupont Mansion. (Even if you don’t say at the mansion, stop by  – no one will mind and there are killer views.) Either way, the beach was stunning, truly “seafoam green” and, as the water stretched to the horizon, varying shades that empty your Crayola box as you try to describe them.

The restaurant scene is surprisingly good. In 2011 the government made way for paladares, restaurants run out of private homes, and the results can be stunning. The cuisine is mixed (some meals were forgettable, others not — and for not-great reasons) but so is the decor and setting — and for that, you’ll be grateful. Some of our favorites included Atelier, Decameron and Fontana. At Decameron, for example, we enjoyed a wall full of cuckoo clocks and amazing lemon meringue pie for dessert.

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Don’t expect to find super souvenirs. We didn’t. There’s just not a lot of merch in Cuba. (Except for cigars, you won’t have any problems there.) Related: You’ll hear that gifts are appreciated, and while everyone we met in Cuba was extremely cordial, I got the feeling that cash would have been preferred to the costume jewelry I’d been urged to bring. You do want to bring your own over the counter medications (particularly Imodium and Pepto Bismol) and plan to leave some behind. That’s definitely appreciated. You might also want to pack some snacks; bottled water is everywhere but we didn’t see so much as a Pringle till we got to the airport on our last day.

I don’t feel like I’ve even begun to tell the story. If you’re going to Cuba or thinking about going, message me. We’ll talk.

Also: I posted more photos on Instragram. My account is @amysilverman.

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Party Hat

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I have some news.

I wrote a book.

After Sophie was born, it took me a really long time to sort things out, and one of the ways I did it was by going back and reporting her story — our story, the story of what it means to have a kid with Down syndrome at the tip of the 21st century. I am lucky (incredibly, indescribably, amazingly lucky) enough to have an agent and a publisher (thanks, Jenny Bent! thanks, Susan Stokes and Woodbine House!) who gave me wonderful advice, guidance and editing — and ultimately let me do it the way I wanted.

So if it sucks, that’s on me.

It’s the book I wish I’d read before Sophie was born, the book I desperately needed once she was here. It’s a mix of journalism and memoir, and it’s about history, medicine, pop culture, friendship, genetics, education, sports, pre-natal testing — and love.

Sophie named the book and she’s super excited for it. I am, too. I haven’t said anything about it except to the friends and family who have heard about it non-stop (and if you think I’m kidding, ask them) and so I’m thrilled to make this announcement.

There will be a launch party at Changing Hands in Tempe on May 1, and more events to come. I’ll announce them here and at my new web site, myheartcantevenbelieveit.com.

I’ve had this little blog for many years (eight in May!) and I’ve never decided just exactly whom the girl in the party hat is. Usually it’s Sophie, but sometimes it’s me. Ditto for the title of this book — she said the words — but when I think about my wonderful family and how lucky I am to get to tell our story, my heart can’t even believe it, either.


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Party Hat

Tangled

posted Wednesday February 3rd, 2016

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Yesterday I ran into the vice principal at Sophie’s middle school. I adore this woman, who ushered my tiny girl into cheerleading and is one of many who look out for her every day. After we had such an incredible experience in elementary school, I never thought I’d get comfortable with these people at this big, scary junior high. But they love Sophie and I love them.

“I’m so excited!” the vice principal told me. “Sophie’s gonna let me do her hair the Friday before Valentine’s Day!”

She explained that she has already bought fancy hair ties and ribbons, then asked, all casual, “Can you send the brush and detangler to school with her that day?”

I smiled and winced, picturing Sophie’s hair that morning when I dropped her at school — snarled, all over the place, a “style” that could (very) kindly be called bed head.

I love the bed head look.

It’s pretty much my only fashion statement and the day I realized 20 plus years ago that my wavy/curly hair looks best if I don’t touch it was a great day. No more curling irons, blow dryers and cowlicks. Wash and wear, with the right product (that last part is key). I haven’t brushed my hair on a regular basis in years; currently I haven’t touched it in months.

Ray doesn’t brush his hair, either. Annabelle, who has a better version of my hair, pretty much shakes hers after the shower  – and goes.

Sophie’s hair is different, fine and stick-straight. It’s gorgeous hair, hair that needs to be brushed all the time.

As you might imagine, she prefers the dad/mom/Annabelle method. Hence, the near-dreadlocks.

As I sit here in the living room, typing, the house is still quiet. I need to get up and make coffee, let the dogs out, urge the others out of bed. Annabelle and Ray won’t need much coaxing, and they’ll be out the door soon. Sophie will require cajoling, begging, bribing — her Carnation Instant Breakfast shake and thyroid pill delivered in bed and a toasted bagel with butter and cranberry juice at the coffee table; then frequent sweetly worded reminders (then yelling) to get her to put on the clothes I put out for her. Then more yelling to get her to brush her teeth, to find her ID and glasses, to quit digging for more mechanical pencils (she sneaks and chews the erasers), and to stop switching out backpacks as we are walking out the door with seconds to spare.

More often than not, I catch a glimpse of the crazy-messy back of Sophie’s head as she’s climbing out of the car and that’s the first time I realize I haven’t even tried to make her brush her hair.

It’s a big deal. It’s important that Sophie look her best (that we all do, but particularly a kid with special needs, who has enough to deal with already) and once again, I’ve failed her.

But her head is extra-sensitive (thanks, Down syndrome) and more than that, it’s just one more thing she has to endure that the rest of us in the house don’t.

The vice principal grinned. She has a vision of making tiny buns all over Sophie’s head, shaped like a heart for Valentine’s Day. I grinned back, thinking, “Good luck with that.”

All hair advice is welcome. I’ve tried everything from olive oil to fancy brushes to threats of haircuts and bribes. Sophie insists that she wants her hair to look like mine, that I don’t brush it and why should she. It’s hard to argue with the logic. And hey, it’s a nice compliment.

“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome” will be published by Woodbine House April 15. You can pre-order it from Changing Hands Bookstore and come to my release party May 1 or pre-order on Amazon. For more information about tour dates visit myheartcantevenbelieveit.com and here’s a book trailer.


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Party Hat

Visions of Rosebuds Danced in Her Head

posted Sunday December 27th, 2015

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In our Christmas-loving house, the days following Dec. 25 can be a sugar-coated letdown. But one member of the family is clearly relieved that the holiday is over. Sophie never really did embrace the Christmas spirit this year — which is weird, considering she’s always been my Santa-believing, carol-singing, present-obsessed kid. But this year she refused to watch Elf and begged me to take down the tree as soon as the last gift was opened on Christmas morning.

It could be that her belief in Santa has morphed into a healthy fear of Santa, or, more likely, that — seeing how much I love Christmas — Sophie decided this year to push back. Maybe it’s just 12-and-a-half-year-old hormones.

In any case, there’s one thing I know she’ll miss about the holiday season: Snow Queen.

We are a ballet family, but my girls don’t dream of sugarplum fairies, or long to be Clara. No Nutcracker for us. Instead, each September Annabelle and Sophie cram into a classroom at their dance studio with kids from all over town to audition for Snow Queen. This original Phoenix production doesn’t involve Swarovski crystal-studded costumes or perfect rows of soldiers. But my kids and their classmates adore it, and others do, too — performances sold out this year, Snow Queen’s 25th season.

Every year, dozens of little girls dream of being the rose princess (a grown-up role played gorgeously by one of my mom’s former students), or at least of being a rosebud, one of four tiny dancers poised behind the princess as she casts a spell over a pile of rose petals that will eventually help Gerda, the heroine, rescue her hero Kai from the evil Snow Queen.

This was Sophie’s fourth year in Snow Queen. By the time Annabelle was her age, she’d been a rosebud several times, and had already moved onto other parts. But Sophie is still the size of a 6-year-old, and was cast in less-demanding roles. The rosebud role is not easy — it requires real ballet skill and,  perhaps more important, the ability to stay still for hunks of time. That’s not easy for my nose-picking, crotch-tugging, wave-sneaking Sophie.

The rosebud is my favorite role in the show. My mom always rehearses the rosebuds and for years, before I had my own kids, I watched her ballet students hit that releve at the end of the dance in unison with the rose princess, arms in synch, waving gracefully as the lights dimmed. My eyes always teared up, and when I finally had my own little girl, I sobbed, watching Annabelle point her toes and wave her arms.

I braced myself, positive Sophie would never be a rosebud. She started late and took on smaller roles — a goofy sprite, a sweet village lass. I think she and I were both prepared for her to be a sprite again this year when I heard that Sophie was going to be considered for rosebud.

I know we were both nervous, the day of auditions. Sophie nailed it — no fidgeting, she got all the moves right. From the beginning it was clear that this role was a stretch, and Sophie worked hard; my mom burned the music on a CD and Annabelle ran the dance with her sister in our kitchen, calling out the moves, snapping her fingers to keep time.

Some days, Sophie didn’t want to rehearse. She snuck into the room where the sprites were practicing. She was teetering on the edge of her comfort zone and I wondered, was this a good idea? Who are we doing this for? But just when I thought she’d give up, each time Sophie pulled it together, asking me to turn on the music. Sometimes she’d make me leave the room; other times she’d ask me to videotape.

The morning of the first day of the show (the girls perform four times in a weekend, twice on Saturday and twice Sunday) my mom called to remind me to have Annabelle do a run-through with Sophie. She did — several times — and we headed downtown for costumes and make up. Annabelle was a grown-up lady in waiting, dancing with the big girls. Sophie took her place with the other tiny ballerinas.

I sat in the audience for the first performance, holding my breath as the too-familiar music began. There was Sophie, dancing the role that so many of my mom’s little girls — including Annabelle — had danced before her. As far as I know, she’s the only kid with special needs who has ever taken the stage during Snow Queen, certainly the only one with Down syndrome, and watching her go through her paces onstage that afternoon, I wondered how obvious it was. Like many people with Down syndrome, Sophie sticks out her tongue when she concentrates, and she was concentrating hard. She knew every move, but her technique was choppy, as though she doesn’t always have complete control over her motor skills — which she does not.

But she had moments of real grace, too, instances where it was clear that Sophie comes from a ballet family, just like Annabelle, a line that most definitely skipped my sister and me but that extends back to my mother, their teacher. Watching her rehearse the rosebud role this fall, noticing the position of her fingers or the way she stretched her leg, and how much she truly loves to dance, I realized that for the first time in her 12-plus years, I wondered what Sophie would be like if she didn’t have Down syndrome. For all my struggles to accept the fact she had it, I’d never tried to separate her from it, never wondered if she’d dance like her sister if she had 46 chromosomes instead of 47.

She did it, that Saturday afternoon. Sophie danced the role of the rosebud beautifully, gracefully, with her own flourishes for sure, but she did it. I could breathe again.

Saturday night, the whole thing fell apart. At 12, Sophie was much older than her fellow rosebuds, and I’m not sure exactly what happened — a late night, some understandable confusion, I was backstage and didn’t see the performance — all four of the little girls were off. The director, Frances Cohen, my mom’s business partner, swooped in, grabbed Annabelle and sent her to the costumer.

On Sunday, Frances announced, there would be five rosebuds. She was double-casting Annabelle.

“Oh shit,” I thought, knowing better than to say a word. Annabelle, who had been called in plenty of times to fill in for a sick or missing rosebud, but never to be a fifth, also kept quiet, but I knew she was not happy.  She didn’t want to upstage anyone, least of all her sister.

But the director’s word is final, and, as it turns out, Frances was right.

The next afternoon, Annabelle took the stage with the others girls, standing in front so they could follow along. All five danced beautifully. No one seemed upset, least of all Sophie, who was clearly thrilled to be onstage with her sister.

That night, during the final performance, there was a moment during the dance where all five rosebuds spread their arms, leaning in to watch Gerda and the rose princess, and — clearly unable to help herself — Sophie slowly reached out her fingers to touch her sister’s hand.

I cried. I cried because, come on, that was the sweetest fucking thing I’ve ever seen. I cried because both my girls danced beautifully. I cried because I know this is not the last time Annabelle will need to take the stage — in some form — to help her sister.

Two weeks later, we’re all still covered with glitter from the stage make up, but my mom and Annabelle have moved on to talking about the spring ballet recital.

Sophie, however, isn’t quite done with Snow Queen. On Christmas morning, after the presents had been ripped open and the stockings emptied, Sophie snuck out of the living room. Through the kitchen door, I caught a glimpse of a leap, then swooping arms. It took me a moment to realize what she was doing.

The rosebud dance.

“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome” will be published by Woodbine House April 15. You can pre-order it from Changing Hands Bookstore and come to my release party May 1 or pre-order on Amazon. For more information about tour dates visit myheartcantevenbelieveit.com and here’s a book trailer.


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Party Hat

Maybe Sophie Knows Best

posted Thursday November 12th, 2015

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Today’s one of those days where I wouldn’t mind having a good cry.

Not a burst-int0-tears-at-the-drop-of-a-hat cry, but the kind you schedule, like Holly Hunter’s character in Broadcast News — where she sits on the bed in the hotel room, unplugs the phone, takes a deep breath and lets it rip.

It started this morning when I stumbled on the fact that not only do the gifted kids at Sophie’s school get to take drama, they also have a journalism elective.

I guess that makes sense, I chuckled to myself. Given the state of my chosen profession it will take only the best and brightest to get us out of this mess.

No journalism for Sophie, or the rest of what I call the “general population,” the kids who didn’t test into the gifted school-inside-a-school. All the kids on campus — gifted or not — can take choir, band, visual art, home economics, computers, Spanish and P.E. But other electives, like drama, sustainability and journalism, are “project based” and reserved for the gifted kids who passed a special test.

Sophie really wants to take drama. And, now that it’s come up, journalism.

“I’m going to talk to the [principal of the gifted school] about it again today,” she told me in the car this morning.

“Oh no, please don’t. You’ve already –” I began. Then I stopped. “You know what, Sophie?” I said. “Say whatever you want.”

Maybe Sophie knows best. I’m beyond knowing what to do. Last week, she made the junior varsity cheer squad. I found myself wondering whether she would have been chosen if there’d been a way to mask the fact that she had Down syndrome from the decision-makers — if her loud voice, memorized cheers, coordination, ballet-inspired grace, high kicks and ability to do the splits would have gotten her in. Her merits, with no qualifications. I’ll never know. The skids were greased. And not in a bad way, necessarily, certainly with the best intentions. But they were greased.

Now the question is, where else to get slick? And that is what has me wanting to cry, because I don’t know the answer. Am I pushing too hard, or not hard enough? What is Sophie capable of? What does she need? When do all the requests for equality get obnoxious? Where is the fucking instruction manual?

After weeks of pleasant conversations at the district level, I’ve made no progress beyond the promise that maybe someone will sponsor a drama club again this year for all the kids at Sophie’s school. It doesn’t appear that anyone’s willing to budge on the question of fairness — explaining why the gifted kids get more options than the non-gifted ones. If a gifted kid can take Home Ec, why can’t Sophie take Drama?

And so I’ll take it up the ladder, hoping the conversations will stay pleasant, but knowing that’s not likely if I have a hope of achieving anything. (And by achieving anything I’m not referring to just Sophie — this is unfair to the hundreds of typical kids who also attend that school and have limited options for electives.)

It doesn’t end there.

Sophie’s been asking for a while why other kids at her school are going on an out-of-town trip to tour colleges. I mentioned it to a couple of staff at the school, who decided Sophie should apply to the program, which is designed for college-bound kids. (Which is sort of depressing — why aren’t all, or at least most kids considered college-bound in middle school?) So now I have another form to fill out. I don’t mind the paperwork, but I’m worried about the implications.

Every week, it seems, a new college program for people with developmental disabilities pops up. So  yes, Sophie will be able to “attend college” in some form. But will it look anything like that out-of-town college tour? Hard to say. Am I just setting her up, showing her what will never be hers?

It reminds me of the conversation I had with her ballet teacher (who happens to be my mom) when I pressed on the issue of whether Sophie would ever be able to dance on pointe. My mom emailed back with a detailed explanation of the physical reasons it would be dangerous, and concluded, “Sure you could put her in a pointe shoe with lots of gel and stand her at the barre but it would be wrong in every way, especially that it would give Sophie hope that’s not realistic.”

For me, that ended the pointe shoe chapter decisively. I still look at pictures of friends’ daughters getting fitted for their pointe shoes with a little sadness, but both Sophie and I have moved on. (At least, she hasn’t mentioned it lately.)

But drama class, journalism class, the dream of attending an awesome college — those are not physical like pointe shoes, they are tougher pages. I’ll need Sophie’s help to turn them.

As I was sitting down to write, a friend posted this on Facebook:

“If disability awareness does not lead to inclusion and full integration and parity, then it is little more than tokenism.”

She’s right. Some days I think that if I see one more television news story about a young person with Down syndrome being elected homecoming king or queen, I’ll scream. I like the fact that people with Down syndrome are modeling, bring awareness and diversity to the runway, but I can’t help but think, “Really? That’s the best we can do?” And I’ll always be conflicted when it comes to cheerleading, no matter how much Sophie loves it.

But none of this is as simple as a status update. Putting Sophie on the cheer squad isn’t enough, I know that. So just what is enough? What does integration and full inclusion and parity look like? Where do we compromise and where do we refuse to stand down?

I don’t fucking know, and that’s the part that has me frustrated.

But I put on mascara this morning. So I’ll have to schedule that cry for another day.

“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome” will be published by Woodbine House April 15. You can pre-order it from Changing Hands Bookstore and come to my release party May 1 or pre-order on Amazon. For more information about tour dates visit myheartcantevenbelieveit.com and here’s a book trailer.


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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
Changing Hands Bookstore
. For information about readings and other events, click here.
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