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Party Hat

Growing Up

posted Tuesday August 18th, 2020

 

 

 

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Facebook memories, you’re killing me.

I brace myself each morning, reminded of how it feels on the rare occasions I leave the house, driving past coffee shops, boutiques and other favorite spots that are currently things of the past. This week it’s all the back to school photos from previous years, my girls grinning with excitement, anxiety or a mix depending on the year — but always on their way out the door, something I no longer take for granted.

I’m okay if I don’t look back, but I’m also not comfortable looking forward, particularly this week.

This week, Annabelle will stuff her car with guitars, art supplies, a few duplicates from my spice rack and a set of gorgeous green and white Syracuse dishware from my overflowing, thrifted collection, and head northwest to Portland for her sophomore year of college. After a lot of hunting she and three friends found a rental house near campus, so the past weeks have been filled with talk of leases, security deposits and the best place to buy a mattress.

I knew it would happen eventually, of course, that Annabelle would live on her own, but I wasn’t expecting it so soon. Annabelle’s never been in a hurry to grow up. I found her sobbing in bed on the night before her tenth birthday.

“It’s all going by way too fast,” she said. I hugged her, thinking, “Just wait.”

Now circumstances none of us imagined have really sped things up, catapulting Annabelle from cushy dorm life to total independence.

It will definitely be a shock after six months of being home. And I really mean HOME. Annabelle came back to Phoenix in mid-March and our household has been in suspended animation even since, with the usual complement of sourdough attempts, family Scrabble games and walks around the neighborhood. I will be just fine if I never see or hear the phrase “silver lining” again for the rest of my days, but the truth is that it’s been wonderful to have her home, to introduce her to movies like Breakfast at Tiffany’s and Valley Girl, let her choose the restaurant for our weekly take-out, watch her dance with her sister in the kitchen and eavesdrop (just a little) on hours-long Facetime calls with her new friends. She rented an upright bass this spring, and if you are going to listen to anyone practice scales, let it be Annabelle on the upright bass. She tends to leave a trail of dirty dishes and unfinished watercolors; I load the dishwasher at least once a day and scoop up her cast-off paintings, hiding them in a pile. Later, when she’s gone, I’ll stare at them.

Sophie and I won’t be along for the ride to Portland. Instead of a weeks-long family road trip up the coast, Annabelle and Ray will make the drive in three days. They’ll bring a cooler of food and camping equipment and pee by the side of the road, trying to avoid people.

I’m happy for Annabelle — as much as I’ve loved this extra time with her, it’s felt like keeping a bird in a cage. She’s got a pile of masks, gallons of hand sanitizer and a good head on her shoulders. I’m concerned, but not hysterical. More than anything, I’m melancholy at the thought that nothing will be easy for her, not like it was her freshman year when kids finished each other’s meals (quite literally — R.I.P. to the Scrounge Table, a Reed College tradition) and piled on top of one another in modern dance. This semester, Annabelle will study solo performance on Zoom, along with most (if not all) of her other classes.

Annabelle is growing up too fast, and at the same time, we’ve pumped the brakes for Sophie, a kid who is always asking what’s next. She can’t wait to be a grown up. Sophie won’t graduate from high school next spring, as originally planned. I’m gambling that the Class of 2022 will graduate in person (and do a lot of other things in person, as well) so we’re giving her an extra senior year. This year will be virtual. I was worried she’d be upset, but she embraced the idea.

As for me, I’m not sure if I want things to slow down or speed up. Fall is my favorite season, it means the Phoenix heat will end in a month or two, and that the holidays are coming. The anticipation is my favorite part, but this year I can’t think about fall. I’m dreading how much different things will be, the parties that won’t happen, the traditions we can’t continue. I know we’ll find new ways to celebrate each other, and that I’ll see reminders pop up next year on my Facebook memories, like the porch portrait our friend Rick D’Elia took this spring.

In a world where the only constant is uncertainty, Ray and I are lucky to have a plan for our daughters, if only for the near future. And yet — well, you know. You’re living through it, too.

 

 


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Party Hat

Dance with Sophie!

posted Wednesday May 27th, 2020

 

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Desperate times mean it’s time to dance — at least, that’s how it’s been in our house this spring.

Sophie’s working toward her goal of becoming a dance teacher by offering her first-ever dance class! On Mondays, Wednesdays and Fridays at 3:30 pm PST, you can join her virtual class via Zoom.

No experience is required, and she will cover ballet and contemporary dance. Wear comfy clothes and feel free to drop in — you don’t have to come to every session. There is no fee.

Email me for the Zoom link: amy_silverman@yahoo.com

Stay safe and healthy, and keep dancing.


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Party Hat

The Law of Words

posted Tuesday February 18th, 2020

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I’m proud of my girls every day — that should go without saying — but Sophie really blew me away this weekend with her performance at Shoo Flies.

Shoo Flies is the little sister of Bar Flies, a live reading series I co-produce featuring “true stories — and drinks” held monthly at a bar in downtown Phoenix. Shoo Flies is Bar Flies minus the drinks, plus a group of teens writing and performing their stories. The prompt for our first-ever boot camp was “stranger,” and Sophie was the first to sign up. I’m not typically into poetry, but that’s what she wrote for her true story, and like I said, I’m proud.

Here is her piece, unedited, as she performed it live onstage at Crescent Ballroom:

THE LAW OF WORDS

What is going on with the laws of words 

The words are kind  to the people with disabilities

The people the words 

Words speak to yourself

And what they say 

The words can be bad 

What is the law of words 

The words like  the r word 

The musical that my highschool did  was Hairspray   

I went to the directors and say words can be bad take one out 

 The laws of words can be tough in some ways how they think how they wright 

The laws of words how they explain to the world 

How i control  with the laws of words  they have the words in the life of words 

How the words can’t talk to yourself use the  mind to you and the world behind you and have the law of words to yourself  and how the life comes and goes and the law how the people say 

words in the law of words when you think the law of words you have the mind set in  the future and detour has words that can be good we just did Rent and words in the show can be risky  in the laws of words can be hard for people with down syndrome to be thoughtful to yourself and 

other people can hear the air of words they listen to the laws of words and how they listen to it and they have the rights to the words of the laws of words and how they think to yourself

confidence to the mind these words can be bad what i  think what is in my head it hurts what is this pain in my body WHAT IS THIS in my head in my body in my heart ugg what is this pain?

Your words, my words our words.  What is this pain in my body and my head how do i get out of it what feelings  do you have in the laws of words what is this feeling how do i get out of here


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Party Hat

Holiday Letter

posted Tuesday December 31st, 2019

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Greetings friends and family!

I’m getting this one in just under the wire, as 2019 slows to a halt. It’s extra chilly here in the Arizona desert, and we are enjoying rare views of snow on far away mountains and treasured time with cousins. I had every intention this year of sending a real letter, the kind that falls out of the holiday card envelope, full of news and snapshots. I even commissioned a family portrait — not a photo, since Annabelle has been off at college — by one of my favorite illustrators, David Quan (aka Luster Kaboom) and I must say, my boobs have never looked better. Thanks, Dave!

Ah, intentions. I could fill a whole letter with lists of the blog posts that weren’t written this year, the assignments I didn’t complete, the abandoned chores and tasks and ideas, but who wants to read about that? Instead I’ll tell you what we’ve been up to in 2019, and I hope you follow suit and leave me a comment with your news.

Okay, here goes.

It was quite a year. Annabelle graduated from high school in May, and we celebrated with cake and an epic family vacation, driving round trip from Phoenix to San Francisco. We spent a night at the Madonna Inn (Sophie was not a fan — but you might be, so check it out), twisted and turned up the coast along Big Sur, glamped near Santa Cruz, experienced Fourth of July fireworks in Chinatown and survived a couple of Los Angeles earthquakes (okay, we didn’t actually feel the earthquakes but it was still very dramatic) and generally had a lot of family togetherness. A LOT.

We also traveled as a family to Portland, Oregon in August to drop Annabelle off at Reed College, where she’s now completed her first semester. Reed seems to be the perfect fit (knock wood) for our creative, quiet thinker. She continued her dancing and climbing, took Intro to Drawing and fell in love with a class called “The Cultural Study of Music.” So far, so good. We are thrilled, though we miss her.

Sophie continues to love the stage. Both she and Annabelle participated in Detour Company Theatre’s Mamma Mia in the spring, and this fall she’s rehearsed for Rent, which Detour will perform in early January. Sophie was also cast in the ensemble of her high school’s production of Hairspray — a goal she’s had for a long time. She’s a junior this year and has really hit her stride, taking choir, theater and dance. She’s not a fan of Algebra 3-4, but unlike her mother, she’s taking the class and she’s doing pretty well. She earned a C for her first semester and the teacher’s comment was that she’s not living up to her potential — which, to me, is a true sign of real inclusion. She’s taking advanced dance with a phenomenal teacher and classmates; she will even travel to Chicago this spring with her class.

At this rate, we will all be sorry to see high school end in 2021. Sophie is considering community college in metro Phoenix, or maybe college in a “funky town,” as she puts it, with the ultimate goal of being a dance teacher like her grandmother. She’s already working as an assistant in a ballet class at the studio where she studies. We are very proud of both our girls.

Ray has proven this year that local journalism is far from dead — he’s worked his butt off as news editor of Phoenix New Times, also serving a stint as interim editor, and he and his team have broken several important stories about the environment, crime and local politics. His writers are really lucky to have him — I wish I’d had an editor like Ray when I was a new journalist. He is questioning and encouraging, all the right things in a newsroom leader. And he’s written some great pieces himself in 2019, too. I can’t wait to see what the next year holds for him. As always, he plays as hard as he works, and even with our mid 50s around the corner, one trip up and down Camelback Mountain is not enough — he regularly hikes it twice in a row. Whenever I misplace him, turns out he’s in the garage, Spidermanning up and down his climbing wall.

I will admit that I let this blog get a little dusty this year, but I was still writing. Last January I made the decision to pursue a full time career freelancing. I set myself several goals, most important to only take assignments I really wanted — which sounds like a given, but isn’t. I was lucky enough to be offered a column at PHOENIX magazine, the local city monthly, and I’ve tackled all sorts of subjects so far in Raising Phoenix, including my changing views of the city, attempts at gardening and even Annabelle’s departure for college. I managed to get published in a couple of bucket list places, like Lit Hub and the parenting sections of the Washington Post and New York Times, and did my first radio feature for KJZZ, the NPR member station in Phoenix. I have continued to teach memoir writing at Changing Hands, our beloved indie bookstore, as well as at Phoenix College, and being with the students is among the most meaningful work I do. I’ve continued to co-produce the monthly storytelling series Bar Flies. This year we also launched Fly Paper as a way to bring the literary arts to Phoenix, and we even published a book of essays from the first four seasons of Bar Flies.

I am so lucky to have work that I love, and in 2020 I’ll be focusing on one big project, a collaboration with ProPublica and the Arizona Daily Star, two of my favorite journalism outlets. More to come on that and other endeavors. Work and life continue to collide in meaningful and sometimes painful ways as I report on and write about the transition from childhood to adulthood for people with intellectual disabilities.

Living in the same city as my parents and so many longtime friends is something I appreciate more every year, and a big part of why I’ve come to love my hometown.

Ray, the girls and I wish you health, happiness and, just maybe, a real holiday letter in 2020.

Love,

Amy


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Party Hat

Retail Therapy

posted Monday July 29th, 2019

 

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If you ask the thermometer on my car dashboard, summer is in full swing. But Sophie goes back to school next week so we’ve been washing backpacks, shopping for highlighters and generally returning to reality after several weeks of travel.

Last week the girls and I dragged ourselves away from the beach, moving slowly to the already-packed car.

“One sec!” Sophie called, stopping in front of the hotel gift shop. “I have to say good bye.”

I was confused — I hadn’t bought her anything all week, we hadn’t even browsed together in the shop. But sure enough, the young woman behind the counter greeted Sophie by name, offering a hug and wishes for a safe trip home.

Annabelle and I smiled. Of course Sophie knew the clerk at the gift shop. She must have been stopping in on her way to the pool.

It’s true that Sophie loves to shop. She gets it from me. I like to say that it’s not hoarding if you stick what you buy in cute bins with labels, but the truth is that I hunt and gather like my life depends on it — and my younger daughter has inherited the gene. She knows what she wants: leggings from Target, foundation from Walgreens, goldfish AND cheddar bunnies at Safeway. A new pop socket, a particular brand of sticky rice, crop tops, Vans.

But mostly, I realized this summer, Sophie is shopping for friends.

She’s got her sister, her nannies, her cousins, her father and me. But the truth is that Sophie spends a lot of time alone. There are no play dates (or whatever you call them when you’re 16), no sleepover invitations.

On one level, I would like to torch the entire world on my daughter’s behalf. Sophie is the best friend that anyone could ask for: loyal, kind, interested, loving, fun.

On another, I get it. Sophie is intense. Her love is fierce and she demands a lot more attention than her peers have got to give — or should be expected to offer. If she’s playing a video game with a friend online, she might not understand when that friend needs to take a break. She texts constantly and calls even more often. (My phone rang twice while I wrote this paragraph.) She has trouble with boundaries.

And yet she craves interaction. So who better to befriend than a store clerk — a captive audience with one job: to engage with the shopper.

Funny, it’s been going on for years. But I didn’t realize it till I had a chance to observe each member of my family in action at a store.

At the end of June we drove up and down the California coast and saw so much — beaches, boardwalks, Andy Warhol’s drawings, Katy Perry’s favorite taco shack, the flower mart in Los Angeles, breathtaking views of Big Sur. We glamped in Santa Cruz and survived a night at the Madonna Inn, an acid trip of a hotel in San Luis Obispo that I thoroughly recommend.

But one of my best memories of the trip is the smallest — from a morning in San Francisco’s Japantown, most of which was spent in a tiny stationery store in an indoor mall filled with teriyaki restaurants and boba stands.

I can count on one hand the things each member of my little family of four loves equally and with abandon — standard poodles, Paul McCartney, Irish soda bread on Christmas morning.

And writing materials.

Ray made a beeline for the journals. He examined them thoroughly till he found just the right one, showed it to me, announced it was overpriced, put it back — and parked himself on a bench outside the store to wait for the rest of us.

I scooped up the journal (his birthday was the following week) and snuck it in with the pile of greeting cards, pens, folders and washi tape I had no business buying.

Annabelle stood in one spot for 45 minutes, trying every single shade of her favorite brand of pen, finally choosing three.

And then there’s Sophie.

Before the rest of us were over the threshold she was standing in the middle of the crowded store, demanding the attention of a young woman who worked there.

“Do you have pens?” I heard her ask, even though she was facing an aisle that held thousands. “Mechanical pencils? Can you show me?”

As they walked away I heard her favorite opening line. “I like your sweater. Where’d you get it?”

American Eagle. It seems like they are always wearing sweaters from American Eagle. This young woman had dark blue lipstick and cranberry red streaks in her long, dark hair. She smiled and spent what seemed like forever patiently showing Sophie each brand of mechanical pencil the shop carries.

The clerk tried to offer Sophie a selection of lower priced items, but still my kid presented me with a $25 journal and a $15 pen. She knew better than to ask for the $29.95 paintbrush.

I waited her out and Sophie chose a handful of cheap pencils and a small journal. But she walked away with so much more. I’ll think twice before I say no to the next shopping request.


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Party Hat

“Forever Intertwined”

posted Tuesday June 25th, 2019

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Today we have a guest post from one of my favorite writing students, Anita Whitely. For her final project in “Mapping Your Memoir,” a class I teach at Phoenix College, Anita wrote a letter. I won’t say anything more — except thank you, Anita. I have learned so much from you.  

I am a recipient of your loved one’s kidney. More than anything I want you to know that I think of you often. I know that it is because of your generosity and honoring the one you lost that I have a life. I want to tell you what it is like being on dialysis. I feel that this is best said in something I wrote for a creative writing class. I will share that with you now.

September 11, 2011, was the first-time dialysis needles pierced my skin. This would continue three times a week for the first five years. It would increase to four times a week for my duration in hell. Dialysis is a medical procedure that replaces the function of working kidneys. Two needles are inserted into the arm, one pulls blood out pumping it into a machine. The machine cleans out toxins and excess fluid, performing the function of working kidneys. The blood is then returned to the body through the second needle. This procedure can take a minimum of three hours. Without this procedure being done on a regular basis, several times a week, the patients will die.

In addition to having this procedure performed, a patient must follow a strict diet including low-phosphorus and low-potassium foods. Phosphorus is in everything, so this limits or eliminates many foods. Potatoes, dairy, anything processed just to name a few. Potassium is in tomatoes and bananas in addition to many other foods that would be considered healthy. The hardest of all is the fluid restriction. 32 ounces a day. Unfortunately, this is not just the fluid the patient drinks. This also includes, but again is not limited to, soup, applesauce, yogurt, anything that breaks down into liquid. This is the basic science of dialysis, all of which has been documented.

This is the information I was given when I started dialysis. There are things no one warns you about. No one tells you about the nausea, vomiting, low blood pressure, and generally feeling like crap. No one talks about them until you’re in the middle of experiencing them. There is also a much more dramatic change, at least there was for me. I found that in time it felt like the dialysis machine not only took everything out of my blood, both good and bad, it also took my sanity, my faith, and my positive attitude. Replacing all these with a feeling of worthlessness, depression, anxiety, and a decrease of my will to live. I can honestly say that I begged God to let me die and end my suffering. I don’t mean just occasionally. I would plead with the Almighty on a regular basis. I was consistently told “NO” it was not my time. No matter how often or how hard I pleaded the answer was still “NO”. I couldn’t understand why I was still here. I had nothing left, I was no longer a teacher, no longer contributing to the greater good, and I felt like I was taking a toll on my family. My family never made me feel like a burden, this was all in my head. I could not imagine what I could ever do that would matter in the world. I had been consumed by my disease. It was hard to find grace. All I could see was dialysis treatments until I died. And in my mind, I would welcome death with open arms.”

By December 2016 I had decided I was not going to live past the end of January 2017. I could feel how much my body was failing, my mind was greatly diminishing, and my spirit virtually gone. I am so grateful that I did not have to follow through on that decision.

On December 9th, 2016 my life started anew. After my surgery my surgeon told me that my donor kidney started working before he could finish my stitches, a highly unusual occurrence. One of my nurses who took care of me after surgery said that she had been doing this type of nursing for over 20 years, and she had only seen such a good match from a deceased donor five times. That’s including me. I never had to return to dialysis. This too is quite a miracle. For most transplant patients they have to return to dialysis until the kidney takes its time to start to work. I could not have asked for a better match. It’s still the most amazing thing to me that two strangers can be so perfectly matched, if only by genetics.

Before my kidneys failed, I was a preschool teacher for over 20 years. I’m very proud of the work I did. I was so pleased to serve the children and families I worked with. But because of an immune system that is now compromised, I cannot go back to teaching. After an organ transplant, the immune system is kept at a minimum. So, because I have a compromised immune system, as cute and endearing as they may be, preschoolers are a petri dish of disgusting germs. That means that I am in the process of reinventing myself. I have to find out who else I am. I absolutely identified myself as a teacher and I couldn’t have imagined doing anything else. I want to contribute to the greater good. Because of this, I have started to develop the skills that would allow me to fulfill a lifelong dream. I always wanted to be, and still want to be, a published author. I want to write children’s books, inspiring stories for young women, and my life’s story. Off to school, I went. I am currently on an academic path that will include an associate’s degree in family development and this will pair well with my first- associates degree in child development. In addition, I am also studying creative writing and American Indian studies.

When you go to school and apply for scholarships and financial aid, you have to have a plan. People keep asking what is my plan, what do I want to do with this education. I answer with great confidence that I would like to work with Native Americans, serving children and families in a non-profit organization. This is my intention. It remains to be seen where life will lead.

For the first time in probably 10 years, I feel like I have my brain back and I can think with clarity. I can manage life, and my spirit is strong. You and your loved one have allowed this to happen for me. You would think because I’m a writer I could come up with some beautiful, eloquent way to express my feelings. I have tried many times both in my head and on paper. It never seems to come out right. I will try once more.

In the morning when I wake up, I open my eyes, knowing I have enough energy and strength to face my day, no matter what it may bring. I pray that God sends you many blessings, it is because of you I will be able to watch my nieces and nephews grow to offer their amazing gifts to the world. I will be able to hold the hands of my parents as they finish their path of life, and to rejoice with my brothers as each one of their children leaves the house and goes off into the world. There are so many experiences that I will be able to have because of you and your loved one. I promise I will never take life for granted. I will always remember that your loved one’s legacy and mine are now forever intertwined.

It is with great respect and immense gratitude that I thank you with all my heart.

(Image of Anita and her dog, Taco, courtesy of Anita Whitely.)  


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Party Hat

Advice for the Graduate

posted Friday May 31st, 2019

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Dear Annabelle,

Today you graduate from high school. You were born such an old soul, so to me, these rituals feel a little funny. And a little sad, because this means you will “leave leave” soon, as one mom (whose kid is staying in town for college) put it to me last night at your final high school dance performance. I know you’ll never really leave us — and it feels funny for me to give you advice, since pretty much everything I know that’s worth knowing, you’ve taught me. But I feel the need to send you into the world with a little advice, so here goes. Nineteen pieces of wisdom for the Class of 2019.

1. Do not cut bangs. You’ve made it this far — be strong. I can send you a picture of me from eighth grade if you need a reminder.

2. Marry someone smarter than you. The other stuff will shake out. But you need to feel like this person is your intellectual equal — at least. They should feel the same about you.

3. Keep dancing, making art, playing music.

4. Tell people what you think, but be careful about when and how you do it. Be honest but consider feelings — and consequences.

5. As soon as you can (but not during college), get a big dog. At least one.

6. See live music whenever you can.

7. Take risks, whatever that looks like for you. For your dad, that means scaling big mountains and taking on politicians. For me, it means pitching big stories and going to scary places. It will look different for you, it does for everyone.

8. Here is the key to baking, from your great grandmother Evelyn Sealove: BUTTER.

9. Read for pleasure, no matter how busy you are with other things. It’s the best way to be a good writer/thinker/talker/human being. It doesn’t need to be the “great books.” Read what you love, whatever that is.

10. Avoid unnecessary left turns.

11. Eat more protein.

12. If you’re going to talk behind someone’s back, make sure they can’t hear you.

13. If you are stressed out, take a deep breath.

14. Call your mother. And your father. Check your email once in a while.

15. Make new friends, and continue to treasure the old ones. Don’t let them slip away.

16. Travel whenever you get the chance. Pick your traveling companions well.

17. Practice the Golden Rule. It applies to everything.

18. Don’t get caught.

19. And in the end, the love you take is equal to the love you make. That’s from the Beatles. You can pretty much figure out life from their lyrics.

And finally, remember how much Dad, Sophie and I love you. Always.

xoxoxo Mom


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Sixteen Candles for Sophie

posted Tuesday May 21st, 2019

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Fifty people packed into my kitchen, drinks in hand, ready for cake. I glanced around and realized I hadn’t seen the guest of honor for at least half an hour.

The back door opened and someone called, “Hey, Sophie’s ready for her entrance.”

I looked outside and there she was, standing in the driveway, waiting to be announced.

I winced. We’d been talking about Sophie’s 16th birthday party for months. Each year, as soon as Christmas is over, she starts planning her birthday party. Since February, every morning in the car on the drive to school, Sophie had buckled her seat belt, put on old Taylor Swift or new Vance Joy or demanded silence, and sat back, at which point the conversation went something like this:

“Let’s talk about my birthday.”

“Okay. Let’s talk about your birthday.”

“You first.”

“I have nothing to say. This was your idea.”

(Temper tantrum until I found something to say. Thankfully, the ride to school is short.)

Over the course of months, it was decided that we would watch movies at Sophie’s party. (But not Sixteen Candles because it’s “inappropriate,” Sophie said.) That her signature party colors would be pale pink and pale blue. (Anyone throwing a baby shower soon? I have a lot of leftover paper goods.) She wanted to serve chocolate bundt cake, lemonade and cranberry juice. All reasonable requests. I said no to the slideshow of photos of Sophie “through the years” and yes to a new outfit.

There was one more request, or maybe we should call it a demand. Sophie wanted to make a grand entrance. She had planned to have a close family friend who’s a dancer carry her in on his shoulders, but he’s out of town. I figured she wasn’t really serious, and that when she learned Brad wasn’t coming, she’d change course. But Sophie had a vision.

And since she was literally refusing to come inside, I stood in the middle of my packed kitchen and bellowed, “Attention! Now presenting Sophie Stern, the almost 16 year old!”

Sophie came marching in the door, beaming, hair curled and makeup applied, in the smallest dress we could find in the Target women’s section. It was still too big.

Everyone cheered and for a moment, I cringed, self-conscious over how different this party was, how different Sophie was. No one else’s 16-year-old demands an entrance. Or sneaks off (this happened later in the evening, several times) to open gifts after she has been instructed in no uncertain terms to wait till after the guests leave. Or sucks her thumb at her own sixteenth birthday party.

It’s too much, I thought, acknowledging that in some ways, it will never be enough. We were surrounded by family and friends, people who love Sophie, but I was thinking about all the kids from school she invited who didn’t come. I was glad they weren’t there to see the “entrance.”

And then, standing there, matches and candles in hand, I felt a shift, a sea change. It was physical, almost. I felt myself lean in.

I leaned in to Sophie’s vision for her birthday. I leaned in to Sophie.

What the fuck? I thought. Good for her. Why not make an entrance at your birthday party. Why not revel in being the center of attention. How much happier would I be if I adopted that attitude? What about you?

I joined in the cheers for the birthday girl as she settled herself at the table, waiting for the candles to be lit.

Sophie had a blast at her party. So did I.


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Lunch Box Excavation

posted Tuesday April 30th, 2019

 

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Packing lunches this morning, I dumped the contents of Sophie’s bag onto the kitchen table — the only good and fast way to get rid of the loose goldfish crackers roaming around in there.

As usual, her calculator was there, too, as well as her school ID and about a dozen mechanical pencils, most of the erasers chewed off. I’m proud of Sophie for figuring out a good place to store her ID; she almost never misplaces it, a pretty big achievement for any kid, let alone one with Down syndrome.

There were a few rogue items in there, as well. I lined them up next to the lunch bag and paused for a moment. Evidence. I feel like an anthropologist these days, sniffing around my teenagers’ lives. Not too hard, I don’t look at their phones or even poke much in their ever-messy rooms. But if something presents, itself, well….. Can you blame me?

At the bottom of Sophie’s lunch bag:

*1 Costco brand granola bar.

*A Hershey’s kiss in pink foil.

*A Hershey’s miniature chocolate bar with an Easter Bunny drawing on the wrapper.

*A campaign button for a girl running for school treasurer.

From both of my daughters’ earliest ages, I’ve learned that it’s almost impossible to get any information about the school day. It’s like doing journalism — the worst way to get someone to tell you an anecdote about anything is to ask, “Hey, can you tell me an anecdote about X?” You’ve got to go in sideways.

Toss in some hormones and the fact that I’m MOM (pronounced “Mo-o-m,” always huffily) and — nothing.

So when they were little I started asking, “Hey, who did you eat lunch with?” And that often kickstarted a conversation.

But here’s the truth: I’m not sure Sophie has anyone to eat with these days. Lunch has always been the toughest hour (or 20 minutes, or whatever the fuck amount of time they give them) of the day. I relate. I ate lunch in the library when I was in high school. Annabelle, Sophie’s older sister, has her own share of lunchtime challenges. For Sophie, it began in kindergarten with one aide for 100 kids — leading to my request for help opening my daughter’s juice box (and keeping her safe on the playground) and, then, the words I can still hear the principal speak as if it was yesterday:

“If you want Sophie to attend this school, she’s going to have to act like the rest of the kids here. Otherwise, there are other options.”

We’ve skidded past those “other options” for years, and here we are, nearing the end of tenth grade. Some years I’ve had spies in the lunch room. Not now. Sophie has an aide for academic classes; otherwise, she’s on her own.

And I have no idea what goes on at lunch.

I stared at the candy, the granola bar, the button. Did someone give them to her at lunch? Or in class? Was each from a different kid, or all from one close friend? On different days? Or did she find them somewhere? (Not really her style, but who knows.) Did every kid at school get one of those campaign buttons, or only a few kids? Does she ever sit with anyone at lunch?

Is she happy?

That last one really bugs me. Sophie is proud. “Everything’s fine!” she tells me, when I ask. The only clue I get is the texts she sends almost every day — from across the dinner table, from her bedroom, from school around lunch time:

It is hard to have Down syndrome. 

That is evidence I can’t ignore, and something Sophie’s been saying since she was 8. Almost half her life. I still don’t know what to do with it.


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Dear Dax:

More than anything, this is a piece of fan mail. I hope you consider it as such. I know it probably won’t make its way to you, but social media is so weird and connective that I guess there’s a chance it will. I hope it does.

I love your podcast, Armchair Expert.

Like, I really love it. (Yes, Amy, you and the rest of America.) I love that it’s obnoxiously long, I love that it goes off topic even before it goes on topic. I love that you were an Anthropology major and clearly smarter than I am. I was an American Studies major, which is like anthropology but easier and I bet you had to take math. I did not. I love that you had Ira Glass on your show and that you admitted to him that when he complimented your movie Hit and Run (which I have not seen and I mention this only as evidence that I am not your stalker, which by now you might be worrying about) it was like the best thing that had ever happened to you because I once got a compliment from Ira Glass and felt the same way and think about it more than is healthy. I love that you talk about shitting your pants. I love that you talk about words and writing and my favorite thing is your fact checking segment at the end of each episode. Fucking brilliant.

I use the word fuck a lot. So much that I’m now that person whose friends buy her stuff with bad words on it — like the plate from a college friends that says “Bullshit” and a needlepoint pillow that says “I Love Bad Bitches” from a writer friend. This Christmas some former co-workers at the newspaper where I worked for 25 years gave me a banner that says, “Do No Harm, Take No Shit” and I took that as a compliment, but I also had to ask myself, “Do you want to be the person who people give that kind of shit to?”

I’m not sure. To be honest, I prefer the Nora Ephron quote my older daughter needlepointed for me last Mother’s Day. It says, “Be the heroine of your own story, not the victim.”

We all veer toward victimhood, but in my case it’s a real challenge because my younger daughter has Down syndrome.

 

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Sophie is 15. Pretty much overnight, I went from being the asshole staff writer at the alternative newsweekly who complimented her boss when he called state legislators “mouth breathers” to being that annoying mom who interrupts conversations at other tables at restaurants when she overhears someone use the word retarded.

Yes, I’m an advocate. I mean, I’ve never called myself that, but I guess you would.

And I know you’ve produced many episodes since last year’s conversation with David Sedaris so this stuff isn’t on your mind, but that’s the episode I heard this morning and it’s the one that’s got me thinking a lot. Even Sedaris seemed uncomfortable when you announced that it wasn’t fair for a parent of a kid with a disability to complain about a comedian using the word retarded, and I cringed when you almost spit out the word “advocate.” Like it was a curse word.

But I kept listening, holding my breath, hoping that this would be a point of discussion in the fact checking segment. It was. And I was glad. Monica (like you) is brilliant and such a good foil — and both of you made good observations. You really made me think, and I already think a lot about why I care about anyone using the word retarded, or other language, for that matter, when my husband and I are both journalists and pretty big First Amendment fans. But neither you nor Monica got to what I really think about when I think about why I ask people to not use the word retarded.

Look, first of all, I get it. I get that we are all drowning in the waves of political correctness. It’s horrible. I can’t say or write a thing without worrying about the thought police. Before Sophie was born, I was considering trying to bring back the word gay (like, really). After she was born, I couldn’t watch Gray’s Anatomy because Sophie had to have open heart surgery and suddenly I could recognize all those words the fake doctors were shouting over the fake patients. I hid in the bathroom and read Augusten Burroughs’ essays till I landed on one where he takes home a guy and fucks him and wakes up the next day and realizes the guy has Down syndrome.

It’s gotten better in the last 15 years, and I do worry about just what you touched on in that Sedaris episode, that I have no business speaking or trying to speak for my daughter. She’s her own person. She can tell you she doesn’t want you to call her retarded.

And she might. Sophie’s pretty fully self-actualized, even with a diminished IQ. I have no doubt that you and she would be fast friends. But let’s face it, most people with intellectual disabilities (a term I hate, I can’t find one I like) can’t tell you they don’t want to be called retarded, because they don’t understand what it means.

Does that mean we should call them whatever names we like, because they can’t tell us not to? What if black/African American people/people of color literally, physically, existentially, couldn’t object to being called niggers? Would we let it rip?

Monica mentioned how hard it is for parents of people with disabilities. It is. I don’t want to sound like a victim (see above) but some days my life really fucking sucks. But it’s so much more than that. I am willing to bet that I love my daughters as much as you do, that they bring me as much joy as yours do to you.

All of that said, I’d like to have back the two hours I spent waiting in line to see the fake Elsa and Anna at Disneyland a couple years ago. But I will not hold that against your lovely wife.

Thanks for making “advocate” my new favorite curse word. If you made it this far, thanks for reading. I’m going to keep listening. Next on my list is the episode with your mom.

Your Fan, Amy

PS Here’s the piece I did for This American Life, and one for Lenny Letter (Lena Dunham’s late, great newsletter). And here’s the style guide for the National Center on Disability and Journalism, which I edited.


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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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