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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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Party Hat

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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Party Hat

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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Party Hat

 

 

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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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Party Hat

There’s No Such Thing as a Christmas Brisket

posted Friday December 21st, 2018

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Editor’s Note: I read this essay at the December 20, 2o18 Bar Flies at The Van Buren in Phoenix. The theme: Eating Christmas.

So, here’s the thing no one really ever tells you about Christmas.

It gets harder as you get older.

This occurred to me last week, when my daughter Sophie ran sobbing to her room at the news that we were going to purchase a Christmas tree that evening.

She’s terrified that Santa Claus is going to come into her bedroom.

Whoever came up with

He sees you when you’re sleeping

He knows when you’re awake

Is an asshole.

I looked it up. His name was Haven Gillespie and he wrote the lyrics to the 1934 smash hit, Santa Claus Is Comin’ To Town. Gillespie died in 1975. According to Wikipedia, he drank heavily for most of his life – something I plan to do, at least until New Year’s.

Christmas is hard. I am old.

Sophie’s old, too. For a Santa believer, anyway. She’s 15 and a half. Sophie has Down syndrome, so it takes her longer to figure some things out.

Santa is one of those things. In between bouts of terror, she loves to believe – she writes Santa letters asking about Mrs. Claus, asking how their Thanksgiving was, asking if Santa knows she has Down syndrome.
This year she removed “bras” from her Christmas wish list. “That’s not appropriate to ask Santa for,” she told me solemnly.

She checks several times a day to see if the response to her letter has arrived.

I realize that I’m a shitty parent for not having clued her in, but really, which one of you wants to be the one to break the news to Sophie?

That’s what I thought.

My wise friend Jennifer has it right.

“Christmas is really at its peak when you’re 3 or 4 years old,” she told me. The rest is downhill.

I think that’s true – for most people. Me, I peaked late.

Growing up Jewish, I never got the chance to believe in Santa. My sister and I got blue and white stockings with a pack of Carefree gum in the toe. There was nothing magical about it. Don’t feel sorry for me – I was hardly deprived – but I always longed for the opportunity to really celebrate Christmas.

I finally got my chance at 27, when I started dating my now-husband, Ray.

Ray’s family was not religious. His mother put the kids in Catholic school when they were little, but it didn’t stick, probably because Ray’s father is a devout atheist.

But I think that man loved Christmas more than anyone. Every year on Christmas Day, he pulled out this faded old velvet smoking jacket and put it on over his undershirt and wore it all day. Ray’s family never left the house on Christmas. Everything was beautifully orchestrated, carefully planned over weeks (maybe months), down to the bowl of red and green M&Ms on the plastic poinsettia tablecloth in the modest Tempe tract home the family purchased in the 1970s, shortly after moving here from Queens.

Ray’s father had retired early from the New York City fire department. He loved being a fireman but the smoke inhalation got him. Ray’s mom found a job doing data entry at the Mesa Police Department. They took Ray and his sister on long summer road trips to national parks till the kids were too old. So far, no one had gotten too old for Christmas.

I immediately accepted an invitation to that first Christmas at Ray’s house – and never looked back. His mom puffy-painted my name on a felt stocking that she hung next to the one she’d needlepointed for Ray when he was a baby. Each year I brought her an ornament for the tree, which she would carefully store with the rest and proudly hang the following Christmas.

We’d arrive early on Christmas morning, sit down to coffee and homemade Irish soda bread (one loaf with raisins, the other without, because Ray hates raisins in his Irish soda bread) and enjoy the spectacle of the lit tree and the stacks of gifts, then take turns opening until there was a giant pile of tissue and boxes, just like in the movies!

Ray, his sister and I would watch TV and nap while their parents bustled for hours in the small kitchen. Ray’s dad always made mashed potatoes from scratch, and together they roasted a turkey, microwaved vegetables, and prepared an elaborate family recipe for stuffing that involves boiling sausage and mixing it with loaves of Wonder bread that have been left out for days.

Ray’s mom would swap the plastic tablecloth for a real one and put out her good dishes.

She made the whole thing look effortless. Every year, I would ask her, “How do you do it? How do you make it so every dish is ready at the same time?”

“Practice,” she would tell me, hiding a proud smile. “Years of practice.”

Then she’d slip into the kitchen to make hot tea, serving it with the cookies I’d baked and mentioning that she was hiding one of my pink iced stars to have the next morning with her coffee. As we scooped up piles of gifts to take home, Ray’s dad would sigh, dejected. He hated it when Christmas was over, he’d tell us.

I totally related.

Ray and I got engaged, then married, then we had a baby, then another baby. His mom added stockings by the fireplace, and the mounds of tissue paper grew. But really, nothing about Christmas ever changed, which is exactly the way I liked it.

And then everything changed.

Just after the holidays one year, Ray’s mom began complaining that her throat hurt. She never complained. By spring, the diagnosis was lung cancer. We celebrated one last Christmas in 2008, and by the next February, she was gone.

I wasn’t completely surprised when, the following summer, Christmas arrived on our doorstep in the form of several Rubbermaid bins. Ray’s dad had left nothing out – he included the stockings, the hooked rug tree skirt, every ornament.

Suddenly, Ray and I were the adults. Over the years, we’ve developed some pretty good holiday traditions – every Christmas Eve we take our daughters out to look at lights. We get home late and the girls go to sleep and Ray and I stay up and drink Bailey’s and wrap gifts, shooing poor Sophie away every time she emerges, worried about Santa watching her sleep.

Christmas morning, I serve homemade Irish soda bread (one loaf with raisins, one without) and I always put out a bowl of red and green M&Ms.

It’s all good. Until it’s time to make Christmas dinner.

We have to have poultry because that’s what goes best with the centerpiece of the meal, the stuffing – that family recipe that involves the aging of white bread and the use of pretty much every utensil in the kitchen. It’s become tradition that Ray makes the stuffing, and he attacks the task with equal parts precision and abandon, which means that he’s inconsolable if the bread isn’t quite stale enough, and also that the kitchen walls wind up covered in onion.

Things aren’t as pretty on my side of the kitchen. The first Christmas dinner we hosted, I made a traditional turkey and we didn’t eat till it was past everyone’s bedtime. The next year I made a turkey breast, which dried up like jerky and tasted like sawdust. Cornish game hens were a big pain in the ass (and a little creepy) and the spatchcocked turkey wouldn’t stay in the largest roasting pan I could find. Parts kept popping out of the pan; that turkey looked like a naked lady with her legs splayed.

I’m not much better at sides, and I’ve never attempted mashed potatoes. But Ray’s stuffing is always delicious, a point of pride.

My father in law hasn’t tried it in years. A couple Christmases after my mother in law died, Ray’s dad stopped coming over. He’s got a girlfriend, now, and they always schedule a trip over the holidays. I wish Ray’s dad would partake in our new traditions, if only for his granddaughters. I want to be mad at him, and then I picture my father in law in his velvet smoking jacket, standing in the doorway as we drive away, sad because Christmas is over.

Last year I decided that it doesn’t really matter what I cook for Christmas dinner. I made my grandmother’s Jewish brisket, the only main dish I can prepare with any degree of certainty of success. Everyone raved, but the truth was that it was a little gross, meaty and greasy next to the sausage stuffing. It didn’t feel right. It wasn’t Christmas-y. The truth is, I wasn’t Christmas-y. I’m just an imposter, I thought. What’s the point?

There’s no such thing as Christmas brisket.

“What if we order in Chinese this year?” I asked Ray last month. “You know, ditch Christmas dinner and make things a little easier on ourselves?”

“Okay,” he said. “That sounds good. But I’ll still make the sausage stuffing, right?

“And can you get some of those Cornish game hens?”

Despite Sophie’s protests, Ray went out and bought a tree, and at some point the four of us will honor another tradition – and decorate it. I’ll open the boxes with my mother in law’s ornaments – delicate glass balls, the popsicle figures Ray made in grade school, the snapshot of his family dog sitting on Santa’s lap and several tiny framed pictures of our girls.

My favorite ornament is a Santa carved from wood, painted in bright colors and shaped like a star. On the side, in my mother in law’s handwriting, it says “Amy, 1995.”

Tonight I’ll stop at the grocery store on my way home and buy the Wonder bread – so there’s plenty of time for it to get good and stale before Christmas. And I’ll see if the butcher has Cornish game hens. I might even try to make mashed potatoes.

We can order Chinese another night.


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Party Hat

Overalls

posted Tuesday October 30th, 2018

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I finally bought my kid some overalls last week. It was time. And not because it was Halloween, although that was her excuse – this time.

Sophie’s been asking for overalls for years, and for years I’ve been changing the subject. That’s not to say this isn’t a kid who gets what she wants, particularly when it comes to clothing. No fewer than five dresses were purchased in anticipation of a recent Homecoming dance; in fact, my teenaged daughter has so many clothes that some days I can barely see her bedroom floor.

And for the most part, she wears what she wants; she’s learned the hard way that Birkenstocks are a lot more comfortable than high-heeled wedges. It works.

But some habits die hard.

It’s been more than 15 years, but I can still remember exactly what it felt like to hear for the first time that my younger daughter had Down syndrome – something I’d only read about in books, or viewed from the safe distance of the other end of the supermarket check-out aisle.

It felt like I was falling. In those first hazy days, it was as though I’d been slung-shot into space – somersaulting, flailing about for something to hang onto.

Something like a bow tie.

I don’t know where it came from, but in my head was the vision of a person with an intellectual disability, wearing a bow tie. Later I added a top hat. And thus was born the Down syndrome Dress Code.

Okay, so the baby, my baby, had this thing. But she didn’t have to fit any of the stereotypes of a person with an intellectual disability (at the time, I – and pretty much everyone else – still used the word retarded). Sophie would be her own person, with her own sense of style. She’d wear only the cutest clothes, like her older sister Annabelle. No bow ties, no top hats. Nothing that reminded me – or the world – that she was different.

At first, it was easy. Babies don’t have much of an opinion on what they wear, and when no other adults were home I’d cram the ugly onesies we’d been gifted — the ones that said things like “Mama’s Lil’ Darlin’” — into a bag for Goodwill and hide them in the trunk of my car for later disposal.

When Sophie had open heart surgery at four months, I hunted for the softest, prettiest onesies that snapped up the front.

When she needed orthotics to learn to walk, I found hot pink Converse that fit over them, instead of the loser leather shoes the doctor recommended.

And then came the overalls. They were in the bottom of a bag of hand-me-downs from a friend, pink velour Circos, Target’s finest, size 24 months. I hid them in the closet, not knowing why I had such a visceral response. It was a long time before I realized the trigger: the character Lennie Small in the movie “Of Mice and Men.”

No daughter of mine, particularly not a “retarded” one, was going to wear overalls. Not even pink ones.

When Sophie was 10, she found those overalls in the back of the closet and tried to put them on. They were way too small, even for her tiny frame. I grabbed them off the kitchen floor and stuffed them away again.

A handful of times over the years – almost as though she could read my mind — Sophie asked for overalls. I’d distract her with a dress or some leggings.

Fast forward to this fall.

It’s Annabelle’s senior year of high school, mostly likely her last Halloween at home, so we’ve decided to dress up as a family, as characters from Winnie the Pooh. My husband Ray is Tigger, I’m Eeyore, Annabelle will be Christopher Robin, and Sophie will be her all-time favorite character, Piglet.

After some Googling, Annabelle is on the hunt for a yellow polo shirt and blue shorts. I got on Amazon and ordered ears for the rest of us. That was easy.

Too easy.

“Hey what are you doing?” Sophie asked as I closed my laptop. I told her.

“I need pink overalls,” she announced. “For my Piglet costume.”

She had a vision of black stripes on pink. I told her she was wrong, that Piglet wore hot and light pink stripes. We looked it up and Sophie was right. She’s pretty much always right.

“Are you sure you want them?” I asked. “I mean, technically, Piglet doesn’t wear overalls.”

“I’m sure,” she said.

She kind of had me. She knows how much I love Halloween. And she really wanted those overalls. I hemmed and hawed for a couple of days, finally consulting with an old friend.

“It’s time,” my friend said gently.

And it was. I don’t see Down syndrome when I look at Sophie. I don’t see Lenny from “Of Mice and Men” or a grocery clerk in a bow tie. I see a creative, rambunctious, smart, pushy young woman who is a combination of Ray and me and a little extra genetic material.

There is no one else in the world quite like Sophie, no matter what she wears.

I ordered the overalls.

She squealed when she saw them, rushing to her bedroom to try them on. They didn’t fit, not even close. Sophie tugged on the snaps. One of the silver fasteners popped off.

“Don’t worry, I’ll order another size!” I said quickly. “No big deal. We still have time before Halloween.”

Sophie wriggled out of the pink fabric, ditching the overalls – and perhaps the idea of overalls forever — on the kitchen floor.

“No,” she said. “Don’t order more. I think I’ll be Steampunk Piglet instead!”

I grabbed my phone and searched, pulling up an image of Piglet in a long coat – and a top hat.

“Okay!” I said, swallowing a gulp. “Let’s do this.”

 


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Party Hat

This Is Not A Test

posted Wednesday October 24th, 2018

 

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This morning, Sophie’s high school classmates are taking the PSAT. Sophie is home, sleeping in.

When she gets up, she’ll do math homework, get her bangs trimmed, watch some YouTube videos. Later in the day, she’ll go to ballet class.

I’ve never let her miss a test before. For 15 years, this kid has been expected — pretty much — to do what her peers do. Until today.

It’s particularly weird, letting Sophie skip, considering that her older sister Annabelle is currently steeped in tests, essays, portfolios and everything else related to a four-year college experience.

Sophie will continue her studies after high school, but she will not be pursuing a four-year college experience. She has already announced that she’ll be attending community college. I love this idea. All over the country, university programs are popping up that are specifically designed for students with intellectual disabilities — except at the nation’s largest university, Arizona State, the one that happens to be located two blocks from my house. That’s okay. From what I’ve heard, some of these programs are very good and others are feel-good money sucks.

We’ll stick with community college for Sophie. There’s no need to take the PSAT or the SAT. And so when she asked to skip today’s test, I hemmed and hawed (and consulted with her lawyer, my mom, the special ed director at the school and several other parents of kids with Down syndrome) and ultimately let her stay home.

The truth is that standardized tests have never really been my thing.

“You could let her go and take it and fill the bubbles out so they make daisy shapes like you used to do,” my mom said. Point taken.

So Sophie stayed home. She rubbed her sister’s nose in it last night, and I’m sure Annabelle was a little bummed to be the only kid getting up so early this morning, but the truth is that Sophie’s the one getting the bum rap. The world wasn’t designed for the Sophies. She’ll find her way, but it won’t be easy. And we might as well start preparing now for the off-trail path.

In tiny ways, I can feel Sophie getting ready for her life. The other night, she went to her school’s homecoming dance with Annabelle and one of their best friends. Sophie planned for weeks, purchasing multiple dresses, planning the evening down to the minute, alternately vamping and nagging throughout the afternoon of the dance till I couldn’t take it anymore.

She asked that our friend Rachel curl her hair, and had Annabelle apply her eyeliner. When she was all ready she looked in the mirror and sighed happily, then said something that surprised me.

“I look like Christina!”

“Who?” Rachel asked, but I knew immediately. Sophie was talking about “Born This Way,” a reality show that follows the lives of several adults with Down syndrome, including Christina, who got married on a recent episode.

I was surprised, because Sophie doesn’t tend to identify with other people with Down syndrome. I was thrilled, too. Every day, Sophie gets older and every day she drifts a little more from her typical peers. She will not grow past 4’5″ and in many non-concrete ways she isn’t keeping up, either.

And yet Sophie is so wise, kind, funny, insightful — all the things I see in Annabelle, the things I always hoped for my daughters to be. Like Annabelle, Sophie is also unique. But she does share this genetic situation with a tribe she (mostly) hasn’t met and I looked in the mirror that night and saw what she was talking about, the same small stature, the almond-shaped eyes, the straight hair. Very different from Christina, and also so similar.

That will be Sophie’s lot in life. Not her whole lot, to be sure, but part of it, and I see her embracing it in small but meaningful ways. I want her to be okay with it — the way I want Annabelle to be okay with the colleges that accept her and the ones that don’t and with a million other things that will come at her.

I wonder if Sophie knows what skipping the PSAT means, aside from a day off school. I think she probably does. I’m not going to ask.

 


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Party Hat

Clapping My Hand Over My Own Mouth

posted Friday October 19th, 2018

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Fall is here, but I’m still thinking about my summer gig.

I spent the hot months of the year with my nose in the dictionary — rifling through medical journals, Googling the history of words, jotting down notes.

And clapping my hand over my own mouth several times a day.

I’ve been a journalist for nearly 30 years and the mother of a child with Down syndrome for 15, so in a lot of ways the assignment to update the style guide for the National Center on Disability and Journalism put me in my sweet spot.

And yet, by the end of the summer, I found myself souring on words in general, barely able to get a sentence out for fear of saying something offensive.

It wasn’t the first time. After my daughter Sophie was born I had a lot to think about, including my own vocabulary. I’d spent pretty much my entire adult life in newsrooms. Journalists – at least, the ones I’ve hung around – are not known for politically correct language. I once complimented my boss on a column in which he wrote off state lawmakers as “mouth breathers.” But after Sophie was born, I was the one asking another writer to stop using the word retarded in staff meetings.

He refused.

I told him to fuck off, but the truth is that I understood. Freedom of speech is the hallmark of the trade, our constitutional right. It’s all that matters, right?

Not really, as it turns out. I went home and watched my baby breath. Out of her mouth. I felt sick.

For years, I worked with a really nice guy who wore a baseball cap stitched with “lamebrain” in big letters. Tee shirts, too. It turns out he and some friends own a skateboard/clothing line. That’s the name of the company, lamebrain. Every time I passed him in the hall, I’d picture Sophie and wince.

By then, most people had stopped using the word retarded around me. But as I learned when I thought hard about what it actually means to have a “lame” brain, or looked up the IQ points originally assigned to the terms imbecile and idiot, or struggled with the correct terminology to describe a friend who uses a wheelchair, it’s about more than the “r-word,” just as the discussion of ethnicity and language reaches far past the “n-word.”

And so when I was invited to join the board of directors of the National Center on Disability and Journalism, I accepted, even though I’d always refused membership in any organization on the grounds that it might affect my objectivity as a journalist.

Who was I fooling? There was no way I could be objective on this topic.

Then came the assignment to edit the style guide, which includes hundreds of terms both acceptable and not. Again, I paused. I thought about Kristin Gilger. Gilger is the director of the NCDJ and senior associate dean at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University, where the organization is housed. She’s also a badass journalist and the one who gave me this assignment.

As I’ve heard Gilger say more than once, the idea behind the style guide isn’t to be the language police, but instead to give journalists suggestions that will give their work more impact. I thought of how many times I had avoided covering disability-related issues over the years for fear of writing the wrong thing, much as I was afraid to reach out to shake the hand of a man with quadriplegia, for fear of embarrassing myself by putting us both in an awkward situation.

I wasn’t sure where to begin, so I started with A – for “able-bodied,” a term that sounds okay but, as it turns out, is often considered insulting. I got stuck in the Ds; for a while, “differently-abled” seemed better to me than “disabled.” After all, “dis” means “not.” Why would someone want to be called “not abled” when “different” sounds so much better?

Turns out, it sounds better to me. But not to a lot of people who feel that “different” is condescending, while “disabled” is honest.

I had a lot to learn. I took NCDJ’s advice and asked people with disabilities how they’d like to be referred to, and when there was disagreement, I said so in the entry on that particular word. There’s a movement to reclaim “cripple,” but not by everyone. Generally speaking, “people-first” language is preferred these days. My daughter is a “girl with Down syndrome” — don’t call her “Down syndrome girl.” But there are some in the autism community who find people-first language offensive. Please, call them autistics.

I spent the summer thinking about disability in dozens of ways I never had, as I ticked through each term in the style guide, parsing different terms for hearing impairment, hearing loss, people who are hard of hearing. I re-read Elizabeth McCracken’s excellent “The Giant’s House,” a novel about an eight-foot tall man in a small town in the 1950s who is invited to join the circus, and flipped back to the F’s to add the word freak.

Several times a day, I caught myself and others using language that used to seem just fine.

“Don’t be an idiot.”

“He seems kind of spectrum-y.”

“That’s crazy.”

Words haunted my dreams. I woke up in the middle of the night wondering, had we included Asperger’s in the guide? Was “albino” ever acceptable, or is it always albinism? (It’s always albinism, I was told by several sources.) I followed every word-related debate I could find on Twitter.

Finally, I got to W for wheelchair user (never wheelchair-bound). Summer ended and I turned in the guide, but I’ve continued to worry. What did I leave out? Will we offend someone? After several rounds of edits the guide went live on NCDJ’s web site this week, so I guess we’ll find out soon.

As for me, I know I still have a lot more to learn. For the most part, I’ve grown accustomed to my internal editor, the one that leaves me searching for words better than stupid. So far, I say “ridiculous” a lot.

And yes, the 2018 update of the National Center on Disability and Journalism Style Guide includes an entry on the term lamebrain. We don’t recommend using it.


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Party Hat

Sophie Didn’t Forget

posted Wednesday September 26th, 2018

 

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Not long after Ray dropped Sophie off at school yesterday morning, I got a text from my friend Elizabeth. Her daughter and Sophie attend the same high school. The text included an image of an exchange Elizabeth had just had with her daughter:

Mom, there’s apparently this thing going around social media that someone is going to shoot up the school at 9:30….I think this is serious, the teachers are even talking about it. I don’t know what to do. Some people are already leaving. 

Elizabeth texted that she was on her way, and then she texted me. Did I want her to get Sophie?

I did. I picked up my phone to text Sophie to tell her and suddenly, I was filled with panic.

Last year, Sophie’s team decided she should leave her phone at home because she has trouble putting it away during class. Nothing was working, I was told, and finally I agreed. This has been on my list of things to discuss at a team meeting at the end of the week — it’s made me uncomfortable, that the rules are different for the kid with Down syndrome when pretty much every kid I know (including the students in the college classes I’m teaching) has trouble putting the phone away.

While all the other kids were texting their parents, Sophie was not. A few minutes went by, and my phone rang. It was not a familiar number. But it was Sophie. She’d found a phone. I asked her to put her teacher on. She did — she was in drama class.

“Is she okay?” I asked the drama teacher.

“She is,” he said. “She’s always calm with me.”

I know how much Sophie adores this guy — she talks about him constantly — and I could hear from his voice that the feeling is mutual. He didn’t want to tell me what to do but he did tell me there were 19 kids in class when the period started and now there were 10. Of course he’d have someone walk Sophie to the office to meet Elizabeth, he said.

I love our village.

Sophie spent the day with Elizabeth. When we spoke, she didn’t want to talk about what had happened at school. She was too excited about the fact that Elizabeth had cranberry juice at her house. They watched Shrek and played cards. Sophie’s nanny, Sarah, picked her up and they headed home to do school work.

The calls and emails from the school district came in all day. The threat was not credible. It’s a crime to make threats on social media. The police have it under control.

I wished for metal detectors. My mom called and wondered if maybe we should get Sophie a bulletproof backpack.

As it turns out, these threats have been coming in all over town, about different schools. Honestly, I’m surprised that kind of thing doesn’t happen more often. Can you imagine the charge that person got out of watching hundreds of parents drop everything and rush to pick up their kids? That’s a lot of power.

And then there’s the power the day had over Sophie. Late in the afternoon she texted me an image from SnapChat that said kids weren’t allowed to bring back packs to school. I emailed Sarah, asking if Sophie was worried.

“She keeps saying her friend got shot in the back and is in a wheelchair now,” Sarah wrote.

Sophie must be confused, I thought. No one was shot today. In fact, I don’t know of any kids at her school who –  and then suddenly, my eyes stung.

“What’s her friend’s name?” I wrote back, even though I knew what the response would be.

Sophie’s friend is Jennifer Longdon. She’s not her classmate, she’s a grown woman, and Sophie is right. Jennifer was shot in the back and she uses a wheelchair. I wrote a story about Jennifer and afterward, we became friends. We’ve eaten beignets on birthdays, Jennifer has come to the girls’ dance performances, and one Easter Sunday, several years ago, Sophie stood in Jennifer’s living room and stared hard, then asked her, “Why are you in that wheelchair?” Jen told her.

Sophie didn’t forget.

I love our village.

My phone rang. It was Sophie.

“Jennifer Longdon got shot in the back and I don’t want anyone to bring a gun to school,” she said.

I thought of how annoyed the staff at the high school would be when I send Sophie to school with her phone. I thought about whether or not to tell Jennifer what Sophie had said. I thought about how completely fucked up the world is.

“No one is going to bring a gun to school,” I told Sophie, although I’m not so sure I believe that myself.

Does anyone know where I can buy a metal detector?

 


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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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