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Where Are All the People with Down syndrome?

posted Tuesday July 22nd, 2014

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I will be the first to admit that I’m not good at math. And this is a math question. Partly, anyway. I think it begins with math — but I’m not sure it ends there.

Where are all the people with Down syndrome?

I managed to schedule my summer travel so I arrived home in time for the hottest week of the year in Phoenix. That’s okay, I’m actually a little sick of other places, eager to sleep in my bed, eat from my fridge, hug my poodle and catch up on bad TV. It’s been a good summer. I’ve hunted for sand dollars in La Jolla, caught up with old friends in LA, and tracked down what might be the only thrift store in Maui. I saw the Kara Walker sugar installation in Brooklyn, scarfed a knish on the Lower East Side and determined that Harlem is not yet gentrified (at least, not the part I saw).

Here’s one thing I didn’t see during my summer travels: a single person with Down syndrome. I was in crowded airports, restaurants, stores, museums and resort pools, on crowded beaches and streets. Not one. And it’s not because I wasn’t looking. I was. Early on, Ray and I determined that no one stares as hard as a parent of a kid with Down syndrome. Does that guy have it? That woman? That baby?

No. Not this summer. And here’s where the math comes in. If 1 in every 700 live births results in Down syndrome — the most common genetic disorder — then why don’t I see more people with it?

Where are all the people with Down syndrome?

I know the answer. They are at Disneyland. That is where I see people with Down syndrome on a regular basis — Disneyland and, sometimes, at the mall on a weekday morning when the group homes take their field trips. Nowhere else. Not as a rule.

And Facebook. I see them on Facebook. In fact, my feed is so loaded with friends and groups associated with Down syndrome that it’s easy to forget that many days, out in the world, Sophie is alone. The only one. Days go by when we don’t even refer to Down syndrome. (Well, maybe a day at a time.) Sometimes out in public, people stare. Often not. She’s tiny enough, I think, that many people think she’s just young. To be honest, I don’t know what they think. I watched her in the pool in Hawaii last week, a little girl in swim goggles and a polka dotted bikini, turning somersaults in the water til she has to stop to catch her breath. By the end of the trip, strangers (to me, anyway) we passed in the resort lobby were greeting her by name.

Sophie is only 11. Will there come a day when we’re done taking her along? Will there come a day when she can travel alone? Whenever I pose a question — about driving, living independently, getting married — well-meaning friends admonish me for being negative. But scanning crowds, looking for people with Down syndrome out there living their lives, I don’t get a lot of positive feedback.

Thousands? Tens of thousands? More? I think about the number of faces I passed over the last several weeks — at the 9/11 fountains, at Strawberry Fields, outside Grand Central Station. On the Venice Beach boardwalk, at the Denver airport. Not one.

When the girls were really little, Ray and I took them to the petrified forest and, unsolicited, a ranger glanced in the back seat then gave us a brochure, told us that we could get Sophie in free if we wanted. Any national park, her whole life.

“They do that so people take them with them, you know,” she said. She didn’t mean anything by it (and I think the park service might have discontinued the program) but I still think about it, all these years later.

Where are all the people with Down syndrome? I know there’s an answer to the math question. Beyond that, I’m not sure I want to know.

Saturday night, Ray, Annabelle, Sophie and I packed pillows and blankets, charged electronics and bought snacks for a red eye flight home. We sat in the crowded terminal, stood in a long line, finally took our seats near the back of the plane. As I got ready to sit down, I noticed a young man sitting just behind Sophie. I know his name was Miles, because it was embroidered on his backpack. He had wire-rimmed glasses and ear buds and looked more like Sophie than she looks like any of her family.

“Hey Ray,” I said, cocking my head slightly and smiling. He looked, then smiled back.

I took my place in the middle seat, a daughter on either side, and pulled the blanket over all of us, feeling inexplicably happy.

“A boy with Down syndrome sitting right behind Sophie!” I marveled, as the ativan kicked in and I drifted off. “What are the chances?”


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This is What 13 Looks Like

posted Thursday July 10th, 2014

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Annabelle turned 13 today.

For the last several weeks I teased my first born, asking if she was planning to turn on me the day she became a teenager.

“Eh, maybe,” she replied last week, tossing off one of those looks I used to give my own mother several times a day, long before Resting Bitch Face became an excuse for a bad attitude. I was terrible to my mom for the duration of my adolescence, although it should be noted that for the past several decades, she’s been my best friend, role model and (almost) daily confidante.

I write more about Sophie than Annabelle on this blog — I cut back on AB a while ago, wanting to protect her privacy, but allow me to indulge today, on the anniversary not only of her birth but of a day a surgeon sliced me across the middle, revealing most of my organs to my husband (who didn’t look away quickly enough and is likely scarred for life, and we’re not just talking about a C-section scar) and pulling out a giant, colicky baby. And that was after the epidural didn’t work and that was after more than a day of labor.

Not that I’m counting.

I made a lousy pregnant person, refused to even consider natural childbirth and never did get the hang of breastfeeding. I’d never changed a diaper before Annabelle was born. I didn’t know what to do with her. Or with myself. I chucked my copy of “The Baby Whisperer” against the wall when she was three days old, already a failure, I decided.

But we found our way, Annabelle, Ray and I, and while I’m not at all religious I do wonder if the universe was preparing us for Sophie — a daughter who, in many ways, will never grow up — by making her sister such an old soul.

Annabelle is quiet and kind. She had a recent growth spurt — we almost see eye to eye now — but she’s still among the smallest in her class. This bothers her less than it used to. She is a ballet dancer. She loves to draw. She wants to learn how to surf. She can play Silent Night on the ukelele. She has a giant collection of nail polish, though she rarely wears makeup. She’s the most adventurous eater in the family; the other night she ordered a crazy-huge bowl of Vietnamese soup with who-knows what in it, and slurped it down. Her birthday dinner request: Ethiopian food.

She adores her sister, who loves her back — and also gives her a hard time. Mostly, she doesn’t mind.

Annabelle’s birthday list included items like thread bracelets and a nail care kit, which didn’t seem adequate to mark something as auspicious as entrance to the teen years. She did not ask for an iPhone. In fact, Ray and I were at such a loss for gift ideas that I piled the kitchen table high with hair accessories and baking books this morning, and we each gave her a trip — Ray’s to the Grand Canyon, mine to San Francisco.

She was delighted. At least, she acted that way — and as of 8 am, she hadn’t turned on me. Not yet.

Apparently, I wasn’t the only one a little worried about Annabelle becoming a teen. Last night, driving home from Sophie’s swimming lesson, she turned to me and asked, in a small voice, ”Mom, even though I’m going to be a teenager tomorrow, will you still treat me like a little kid when I need you to?”

“Yes,” I said, turning my head to hide the tears. “Of course I will.”

Always.


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Annabelle Gurwitch, Meet Your Namesake

posted Friday June 27th, 2014

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The line dwindled, the authors stopped signing books and were chatting with each other, looking bored. It was time.

“Okay, Annabelle,” I said, nudging her. “Let’s go introduce ourselves.”

As a rule, I don’t line up to meet authors. Not authors I like, anyway, not since a bad encounter many years ago with T.C. Boyle. I don’t want to risk ruining my love of a good author with an encounter with a bad personality. Plus, I tend to gush. Not one of my best attributes.

But this was different. This was Annabelle Gurwitch.

Hers may not be a name that rolls off your tongue, and if you do recognize it, it’s likely for her work as an actor rather than as an author, and if you’re like me, it’s because she was on this show called “Dinner and a Movie” that aired in the late 90s (that’s when she was on it, anyway) in which she and an equally adorable male actor teamed up each week to show a movie (usually an 80s classic) and make dinner to go with it. Usually one of the actors from the movie would show up — think Jon Cryer and “Pretty in Pink.” The show was on Friday nights, and in the late 90s there was nothing to do in Phoenix, so I watched it a lot.

Like I said, Annabelle Gurwitch was adorable. When she left the show, I stopped watching it and found something else to do on Friday nights. A few years later I was pregnant with my first child, searching for just the right girl name. In Judaism (even my casual brand) you don’t name people after anyone you know who’s still alive, and we didn’t have any dead relatives with names I liked enough. I wanted to name the baby Rosy, but that was the dog’s name. And the second choice, Isabelle, was taken by the cat.

I stressed a lot about this. I wrote a piece about it for Salon. I wanted something sweet and classic, a little homespun, but a name that would stand the test of time. Nothing super popular, either. Annabelle came to mind, but it seemed way too cute — okay for a baby or a toddler, maybe even a young girl, but an adult? Seemed like an awful lot to ask of a grown woman.

I wracked my brain. Had I ever encountered an adult named Annabelle? YES. I had. Annabelle something-or-other, from that dinner and a movie show! And not only did that woman rock the name, she also had an ethnic last name — and awesome glasses long before glasses were hip.

Sold. Ray liked the name, too. Fast forward 13 years, and there Annabelle and I were last night, at a reading in Scottsdale featuring none other than Annabelle Gurwitch. I go to (and once in a while take part in) readings all the time, but this was Annabelle’s first. She LOVED it, had wise and kind comments to make about just about every performance, and gasped when she saw Annabelle Gurwitch’s shoes. (I noticed them, too, super cute orange T-straps. I also loved and related to her piece, taken from her book, “I See You Made An Effort: Compliments, Indignities and Survival Stories from the Edge of 50.”)

That would have been enough. We could have headed straight home after the reading. But I took a chance.

“Hi,” my Annabelle said, sticking out her hand. “My name is Annabelle.”

A slow grin spread across Annabelle Gurwitch’s face. She stood up and came around the table. I don’t think she meets many Annabelles.

“So, you are going to think this is really weird,” I told her. “But she’s kind of named after  you.”

I explained — the quest for the right name, the glasses, the Jewish last name. She nodded, pointing to my own glasses. She totally got it. If she was creeped out, Annabelle Gurwitch didn’t show it. She could not have been nicer. Truly. She pulled her tiny namesake aside, engaging her in conversation. They talked about ballet and fashion design and the role of the producer in a theatrical performance (that’s what Annabelle says, anyway) and how my Annabelle didn’t used to like her name (news to me) but likes it now (phew) and later Annabelle told me the older Annabelle talked to her like she was really important. “I liked that,” she said.

I loved it. And only after we left did I realize what a risk I took. It’s one thing to not be able to read T.C. Boyle’s books anymore. If Annabelle Gurwitch had been bitchy, would I have had to change Annabelle’s name?

But that didn’t happen. And now I’ll gush: Annabelle Gurwitch is smart, funny, beautiful, accomplished,  kind, a writer — and at 50 she’s still adorable, still rocking that name. She still has excellent glasses. I can’t think of a better namesake for my daughter.


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Kidploitation? Or something else?

posted Monday June 9th, 2014

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The other day I did some housekeeping on Girl in a Party Hat, which included updating the blogroll, and I was struck by how many of my fellow bloggers have stopped blogging — or, at least, haven’t updated their blogs in a year or two.

I get it. I started my blog when Sophie was 5. Today, at 11, she’s so savvy she writes guest posts, wants to read what I write, dictates when I can and can’t take her photo (on Saturday it was okay, as long she added a long orange braid to the ensemble I was eager to capture), and the other day she asked to borrow my computer because, she says, she’s writing a book. Her self-awareness prompts the same in me. Some days, it does feel invasive, writing about Sophie. More and more, I self-edit. Or try to, anyway.

And yet I still feel compelled to do it. Last week, Brain, Child published a piece I wrote about Sophie and puberty. Last month, I wrote a cover story for Phoenix New Times about the year-long struggle to find a charter school that would take Sophie. My friend Robrt included some images of Sophie in a show at his art gallery. Once in a while, KJZZ (the local NPR affiliate) is kind enough to share the latest in what I’ve long called The Sophie Chronicles.

Oversharing or illuminating? (Wait — don’t answer that.)

Why do we write about our kids, document their every move on Facebook and Instagram, in blog posts and elsewhere? I don’t know about anyone else, and maybe my own reason is BS, but I’ll share it anyway. I began Girl in a Party Hat in an attempt to document what Sophie’s life is like, to show how similar she is to typical kids and also how different. And, to be honest, to figure her out.  Before Sophie, I had never found writing to be therapeutic (to the contrary, it’s always been a painful, tooth-pulling process for me — which sucks since I chose a career as a journalist) but GIAPH did become for me a sounding board and a confessional and I still find often that after I finish a post I feel a sense of peace.

Before Sophie, I’d never met another person with Down syndrome. If this blog or the other things I write help even one person to be a little less wary of people with DS, if anyone finds it relatable — parents of kids with or without disabilities — it’s all been worthwhile.

All of which sounds more defensive than I meant it to, and it’s not even the reason, really, that I set out to write this post. I wanted to tell you about My Star Wars Family. Whether you have a spare 4 minutes or not, stop what you are doing and watch it. It’s phenomenal. I don’t want to tell you much more than that.

When my friend Timothy Archibald recommends something, I know it will be stellar. Tim’s own photography — which I’ve admired since we worked together many years ago — is truly great.  I remember that he and I used to drive around crappy parts of town, looking for a story idea. Turns out, that’s the worst way to find a story idea. And ultimately, Tim had no shortage of ideas — he gets high profile commercial and editorial work and (something I recall from our days working together) he tends to find a personal project in an assignment. You can see it all at timothyarchibald.com. But my favorite work of Tim’s is about his older son, Eli. I’ve written about Tim and Echolilia before in a little series I did for GIAPH called “Should We Be Writing About Our Kids?” You can learn more at echolilia.com.

Four years later, I’m still asking the question: Should we be writing about our kids, particularly our kids with disabilities? Should we be photographing them, letting other people photograph them? I’m too close to my own work to say anything there, but when it comes to a journalist/artist named Annalisa Brambilla, the answer is YES.

When he posted the video, Tim wrote this on Facebook: I can’t repeat this enough: Brambilla was an outsider, a journalist, an artist, but these images feel like they were made by the family themselves, and some of them were. I do believe this is the way stories will forever be told when they are told well.

I completely agree. Make sure you watch My Star Wars Family.


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The Miracle Workers

posted Friday June 6th, 2014

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In an effort to break up the “Full House” rerun marathon threatening to continue through the summer,  last night I took the girls to see a community theater production of “The Miracle Worker.”

I was a little obsessed with Helen Keller when I was a kid, and Sophie already owned a copy of the script for “The Miracle Worker,” thanks to her own obsessive play shopping at our local bookstore, which doesn’t have a kids drama section. Hence, Sophie owns a few Neil Simon plays and a copy of “Our Town” along with “The Miracle Worker.”  She obviously hadn’t gotten much out of whatever perusal she’d made of the script, because she had a lot of questions.

“Did Helen Keller have heart surgery?” Sophie stage-whispered, a few minutes into the play.

“No,” I whispered back.

A few minutes later: “Did she have a feeding tube?”

“No.”

I looked down at Sophie, who was intently watching the stage.

“Hey, do you think Helen Keller had Down syndrome?”

“Yes.”

The play was quite good, and the girl who played Helen was phenomenal. The role was very physical (obviously, if you know anything about Keller’s story) and she and the actor who played Annie Sullivan had great chemistry. (If you are in town and have a chance, “The Miracle Worker” is playing at Hale Theater in Gilbert through July 5.)

While Sophie was busy trying to compare herself to Helen Keller, I focused instead on how different my daughter is from her, trying to imagine what that must have been like, to have a child locked up like that. I realize, writing this now, that the similarities to autism are certainly, painfully there — though the tragedy is that in so many cases, when it comes to autism there’s not much an Annie Sullivan can do to unlock that door that stands as a barrier to communication.

But Helen Keller and Sophie aren’t so much alike. At least, I don’t think so, although a few times during the play, I found myself trying to keep Sophie quiet as the Kellers were battling Helen, and had to shake my head at the coincidence. And I wonder what Sophie saw that so convinced her of it. Maybe, simply, it was the fact that she doesn’t often see depictions of people with disabilities. None of us do.

One unmistakable similarity, despite the time and the diagnosis was the miracle worker, herself. I’ve been on the inside looking out for so many years, I hadn’t stopped to think about how necessary teachers, therapists and other care givers are when it comes to stopping parents (like me!) from coddling their children, (kindly) stepping in between parent and child to do the tough work that needs to be done. I teared up at the end of the play, as Annie signs “I love you” to Helen, thinking of all of the miracle workers in Sophie’s life. My life, too.

During the play and intermission, and even into the second act, Annabelle and I tried to (quietly) explain to Sophie that Keller was deaf, blind and mute — but didn’t have Down syndrome. I guess Sophie didn’t believe us. After the play we lined up to meet the actors (always my girls’ favorite part) and Sophie posed her question to the 5th grader who played Helen Keller.

The girl looked at me, slightly panicked (standing behind Sophie, I silently shook my head “no”), then back at Sophie and answered, “No, she didn’t have Down syndrome.”

Annabelle, who had been quiet much of the evening, told the man and woman who played Helen’s parents, “That was the best play I ever saw.”

She didn’t say much after the play, either, and I wondered what was going through Annabelle’s head, what she thought of the play — particularly the family dynamics. Annabelle is a bit of a miracle worker herself, when it comes to Sophie, but I know things aren’t always easy for her. Waiting for the play to begin, she was understandably mad when Sophie pushed her away when she tried to give her a hug, and gave her sister the silent treatment for a good, long time.

Later at home, I heard Annabelle say quietly, “You know I love you, Sophie. I’ll always love you.” Sophie apologized quietly.

I wonder if I would have been as good a sister. I don’t think so.

 

 

 


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My Birthday, A Guest Post by Sophie

posted Tuesday June 3rd, 2014

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hi every one this  is Sophie  i am 11  and i got a phone  so i did a sachions  and   the  1 one is cuddle   the 2 is nils  and  the 3  is fashion    and 4 is phpter i booth  that was fun and  the last a stumbler  pray with my reply god friend  name is Sarah  my other goo friend Gracie and  and my Annabelle  and graces  sister was there  her  friend   lily that was yourfafret songs for 11 kids and do you kowne  any plays

Edited version:

Hi everyone, this is Sophie. I am 11 and I got a phone. So for my party I did stations and 1 was cuddle, 2 was nails, 3 was fashion, 4 was a book swap and 5 was a photo booth. That was fun and the night before I had a slumber party with my good friend Sarah and my other good friend Gracie and my sister Annabelle and Gracie’s sister Teadora and Annabelle’s friend Lily.

Here is my 11th birthday play list. What was your favorite song when you were 11? And do you know of any plays or scripts for kids?

SOPHIE’S 11TH BIRTHDAY MIX

Team * Lorde
Happy * Pharrell Williams
Girl Party * Mack-Z
Party in the USA * Miley Cyrus
Love Shack * The B-52s
Marry You * Glee
Counting Stars * One Republic
Shot in the Dark * Emma Lee
Wrecking Ball * Miley Cyrus
The Nicest Kids in Town * Hairspray
Hot Stuff * Donna Summer
Silly Love Songs * Wings
We Didn’t Start the Fire * Billy Joel
Chicken Soup with Rice * Carole King
For the First Time in Forever * Frozen
Seasons of Love * Glee


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Thank You, Broadmor Elementary School

posted Friday May 30th, 2014

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For many years, I wrote about Sophie’s school without naming it. Now that she’s finished there — moving on to junior high — I have no reason to keep the name a secret — and every reason to tell you what a fabulous place it is. Was. Is — for lots of kids. Not for Sophie, not anymore. School’s been out for a week and I still can’t think hard about it without blinking back tears.

I’ve been lucky enough to have had the chance for several years to chronicle Sophie’s adventures on KJZZ, the Phoenix National Public Radio affiliate. I did a commentary about Sophie’s first day at Broadmor Elementary School.

And I did a commentary about her last day there, too. Three minutes wasn’t nearly enough time to express my gratitude — but I hope I made my point.

Here are each of the pieces:

Sophie’s First Day of Elementary School

Sophie’s Last Day of Elementary School 

 


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Conquering the Kitchenaid

posted Tuesday May 27th, 2014

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This past weekend, we held an early celebration for Annabelle’s 13th birthday. I made her cake with simple recipes for white cake and buttercream frosting I found online. It did include four layers in varying shades of pink, per the almost-birthday girl’s request, but otherwise it was the simplest of cakes.

And it was a milestone for me. I actually used a Kitchenaid mixer.

I have a lot of fears. In no particular order, I am afraid of dental work, heights, the ocean (and everything in it), snakes, turtles, rodents, birds, using a corkscrew, oncoming trains, roller coasters, elevators, escalators and falling down stairs.

For the most part (elevators and escalators aside), I embrace my fears. Really, I’m okay with never teetering on the top of the Ferris Wheel. I don’t need to pet your desert tortoise or eat sushi. After 47 years, I’ve learned to work around my fears. Even work with them.

But one fear was really getting in my way, and last week I decided it was time to conquer it.

I was afraid of my Kitchenaid. For several years and more than one model, I refused to turn on my mixer, mostly for fear I’d wind up covering the entire kitchen with a fine spray of flour — or something worse. I received a couple as gifts, but always gave them away to friends, muttering about not having enough counter space but really, in my heart, terrified of the thing.

And yet, I love to bake. After years of smooshing cookie dough and cake batter with my fingers (sorry to any of you who tried to eat any of it) last summer I finally eyed a hot pink number in Target and brought it home, vowing to use it. Eventually.

The Kitchenaid gathered dust for months. From time to time, a friend would come over and use it, but we all know that didn’t count.

“Hey, you’re going to make my cake from scratch, right?” Annabelle asked last week. She’s big on “from scratch.” 

“Of course!” I replied, realizing as soon as the words were out of my mouth that there’s no way to make buttercream with your fingers.

And so I did it. I put the ingredients in the bowl, secured the latch,  held my breath and turned it on to the very slowest speed, just like everyone who’s ever heard me express my fear of the Kitchenaid has told me to do. I didn’t spray the kitchen with powdered sugar. There were no I Love Lucy moments. In fact, the cake was done and baked and iced before I knew it. The layers came out even (for me), the icing was creamy and easy to spread. I didn’t try any, but I’m told it tasted pretty good, too.

That night, I had trouble lighting the sparklers (another fear) but hey, one phobia at a time.

For now, I’m taking birthday cake orders.

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This is What 11 Looks Like

posted Wednesday May 21st, 2014

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I’ve never considered 11 to be much of a birthday. Shoved between 10 (a whole decade!) and 12 (last year before you’re a teen!) it’s always been an inauspicious no man’s land for me. Of course, there’s no such thing as a small birthday in our house (I blame myself — okay, and my mom) and as it turns out, 11 has been a pretty big deal for Sophie.

This week is big in general — school dance, visits from out of town friends, and the last day of elementary school. I’m a mess and so is Sophie. She’s admitted on more than one occasion that she’s sad to be leaving her school. I feel like this week is slingshot-ing us both into summer, and we’ll free fall til it’s time for junior high to start.

Eleven is big because I see, more clearly than ever, how Sophie is teetering on the brink of adolescence. Her version, anyway. Among her birthday presents this morning were a phone, makeup, Barbies and a cute striped tank dress, but she also received a stuffed Peppa Pig, the star of a show meant for toddlers, and aside from the phone, I have a feeling that Peppa was her favorite gift. At 11, Sophie still sucks her thumb when no one’s looking — and even when they are.

She has been a diva this past week (too much birthday partying, I fear) but she is also wise and kind. Yesterday she dictated a thank you note to her aide at school, who stood in line at the Disney store with a lot of other “Frozen” fans to get her a stuffed Olaf and an Elsa dress, and at the end of the note Sophie added, “Thank you for taking good care of me.”

Last night at the school dance, they played the theme song to “Frozen,” and my friends and I giggled at the little girls belting out the angst-ridden anthem and wondered what these kids have to worry about, anyway. I watched Sophie approach several groups of girls, trying to engage them (with varied success) and thought to myself, she has plenty to angst about. I just hope she doesn’t realize it.

Today, Sophie wore the Elsa costume to school, over her new tank dress. She did not look anywhere close to 11. But she looked beautiful.

See also: For My 11-year-old Annabelle: Things to Worry About 


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amysedickse

An accomplished attorney named Dick Segal passed away this spring. He had lots of fancy titles and accolades, but to me, he’ll always be Dick Se., father of my oldest and dearest friend.

When Amy Segal and I met in Mrs. King’s second grade class at Hopi Elementary School in Phoenix, it was over a name situation. We cooked up a scheme that would allow us (well, me, mainly — I had the longer one) to avoid writing our entire last names on every paper, every time.

How about Amy Si. and Amy Se.? we asked.

Mrs. King said no. Amy and I bonded over the injustice of it all, and grew up to be two women who fight a lot. (Luckily very rarely with one another.)

We always laughed over the fact that her father and stepmother, as well as my parents, were named Dick and Susan.

And there was one more thing: We both lamented the fact that our fathers were men of few words. Looking back, I’m not so sure that was ever true. Maybe it’s just that Amy and I have such big mouths. Who can ever get a word in edgewise?

If you’ve met either or both of the Dicks, you might beg to differ on the chatty thing. In any case, both are pretty amazing fathers; over the years I’ve seen actions speak far louder than words. I doubt anyone would question that.

At Dick Se.’s memorial service yesterday, a lot of people shared Segalisms. No one shared my favorite:  ”There’s a pimple on her but(t) she was pretty.” I get it, it was a funeral. But I’ve always loved that one, not only because it’s a little naughty but because it’s a word play and it’s about looking at things from different angles and arriving at very different conclusions — something I’m sure he did a lot as a lawyer and maybe even as a father.

Listening to Amy’s recollections yesterday, I was struck with how proud I was of my friend, how graceful and wise and beautiful she is — and how proud her dad would be, too. Amy was kind enough to allow me to share her piece here.

When I was 3 years old and my sister, Lisa, was 5, she got to do something that I didn’t get to do. I have no recollection of what it was but, as our dad used to tell the story, I was none too happy about it.  I told him, “It’s not fair!” He said, “Amy, life’s not fair.” And I said, “I know that.  I’ve known that for a long time now.”

The reason I knew that at such a young age is because it was one of the many lessons that he taught us early and often.  He understood that life wasn’t fair so it’s fitting that he devoted his entire career to seeking justice.

He was a brilliant lawyer.  But it’s not something we knew much about growing up.  He was a man of few words and didn’t speak of his accomplishments.  So it was only over the last few weeks that I heard certain stories about his career for the first time.  One of them was about how when colleagues asked him to review briefs, he would often reduce entire paragraphs to one sentence.  I was amused by this because he was no different at home.

When we would ask him to review a homework assignment or a college application essay, he’d get out his pen and say, “Write like a man!”  It didn’t occur to us at the time to say, “Dad!  You can’t say that to your daughters.  It’s sexist and politically incorrect.”  Instead we just took out everything that was superfluous and are still doing that to this day.  But even if we had articulated those thoughts at the time, it would’ve been nonsense directed at him because he was neither sexist nor politically incorrect.   In fact, he was the exact opposite and always brought us up to believe that we could do anything we wanted to do.

Though he was fond of striking out words, he did love them.  He was an avid reader and encouraged intellectual curiosity in those around him.  When we would ask him how to spell something, he’d say, “Look it up!”  And we’d say, “How can we look it up if we don’t know how to spell it?”  And he’d say, “You’ll figure it out.”  And we did.

In addition to reading, he loved to travel, hike Camelback Mountain and cook.  As Lisa said recently, he was a foodie before foodie was even a word.  I recall many weekend afternoons of him making elaborate meals with a football game on in the background.   He loved to eat and he and Lisa would often have lunch at the latest restaurant in Phoenix while he and I would share reviews of restaurants in New York.

Not long ago, there was one in the Times about a new place called Uncle Boons.   Boons is spelled without an apostrophe — even though one belongs there — and the food critic wrote, “Some New Yorkers are offering opinions about the curry while others are still puzzling over the fugitive apostrophe.”    I read this on the subway on the way to work and smiled as I imagined an apostrophe on the run, holding on tight to a subway pole as it high tailed out of town.

I emailed the review to my dad and said, “Who would have thought that the words ‘fugitive’ and ‘apostrophe’ would ever appear in the same sentence, much less next to each other?”  He wrote back almost immediately and said, “In Ulysses, James Joyce describes a man carrying a sign that is part of a letter sequence advertising some Dublin firm.  This man carried the apostrophe.  Maybe that is the one you’re looking for.”

It’s this type of answer that I’ll miss the most.  Dad’s mind housed such a deep reservoir of knowledge and yet it revealed itself in measured and surprising ways.  We all know really smart people who spend a lot of time telling us how really smart they are.  He was not one of those people.  Rather, he doled out wisdom more on an ‘as needed’ basis.   But it wasn’t always what we expected or wanted.  When we would ask him what the meaning of life was or what the purpose of it all was, he’d invariably say, “Wet birds don’t fly at night.”

What does that even mean?  It made no sense to us and we wanted answers.  So we asked the question in different ways — from all angles — hoping to catch him off guard so he’d tell us something more satisfying.  But no.   To the ‘big question’, all we ever got was, “Wet birds don’t fly at night.”  

As young girls, this was a hard concept to wrap our minds around.  As adults, we still have no idea what it means.  And, yet, we know exactly what it means.  He knew a lot but he didn’t presume to know everything and there were some things that he just wanted us to figure out on our own.

As we continue that journey, it won’t be the same without him.  But Lisa and I have decided that whenever the ‘big question’ comes up, we can watch Monty Python’s The Meaning of Life because Dad loved Monty Python and we think that, in his absence, he’d find it perfectly fair for those guys to stand in as his proxy.

 


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Amy Silverman
Amy Silverman has two beautiful daughters, Annabelle and Sophie. Sophie has Down syndrome. These days, Amy divides the world into two groups: the people who adore Sophie, and those who don’t look twice. Amy has to remind herself that once upon a time -- when it came to people who are "different" -- she fell in the latter category. And therein lies the blog... Read more
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