Girl in a Party Hat » my heart can’t even believe it

A Conversation with Elizabeth Aquino May 6 at Chevalier’s Books in Los Angeles

Amysilverman — Mon, 02 May 2016 13:00:54 +0000

One of my favorite parts of blogging — and social media in general — is the connections we make off the written page. When I contacted Chevalier’s Books in Los Angeles to schedule a reading from my book, the marketing manager (her name is Liz, so things get confusing immediately) asked if I was interested in doing a joint event with her friend Elizabeth Aquino. “I know her!” I replied.

Well, “know” might not quite describe it — but I’ve been reading Elizabeth’s blog for years, and we have mutual friends from different parts of our lives. Also, she’s a freaking amazing writer.

Kismet!

And ta da, this Friday, May 6 at 7 pm, Elizabeth and I will take the “stage” together at Chevalier’s — one of the sweetest indie book stores I’ve ever been in. (Sophie and I checked it out on a recent trip to LA and she very much approves — and is pretty pissed she’s not coming along. Darn seventh grade.)

Elizabeth has an official bio that I’m going to share, and I also asked her to answer a few questions about blogging and why she does it. I’m always curious. I can’t wait to meet her in person and I hope you join us on Friday. I hear there will be some pretty fabulous baked goods to go along with the conversation.

And now, please allow me to introduce Elizabeth.

Elizabeth Aquino is a writer living in Los Angeles with her three children, the oldest of whom has severe disabilities and is the inspiration for much of her work. Her essential blog, a moon worn as if it had been a shell, is a place where disability, poetry, politics and parenting intersect. Elizabeth’s work has been published in literary journals and anthologies, and in The Los Angeles Times. She was the recipient of a Hedgebrook Writing Fellowship for work on her current memoir Hope for a Sea Change.

When did you start blogging?

My first post was June 30th, 2008. I introduced myself as a writer who loved poetry. My second post was about the death of my young sons’ Beta fish who was named Lemonade Cool Shark. I had no idea what I was doing and named the blog this long line of poetry — from W.B. Yeats’ “Adam’s Curse.” I’ve always loved that poem and that line in particular, but it’s a ridiculous name for a blog.

Why?

I had part of a manuscript for a memoir that I’d been working on for a couple of years. I sent out a couple proposals to possible agents, and one of them said that while I’m shopping around, I should start a blog to get some readership. I had no idea what I was doing, was only vaguely aware of blogs because I had a friend or two that had them, but I went to Blogger and began posting.

Who’s your target audience, if you have one?

Initially, I hoped to reach other parents of children with special needs, but as a writer and lover of poetry I imagined a community of like-minded people as well. I’ve always struggled with my identity as mother of a special needs child and as woman, writer, person in her own right. The target audience, though, morphed into a vast and beautiful community of artists, parents, disability activists and some very funny people thrown into the mix.

What topics are out of bounds (if any)?

I don’t write about marriage. I am divorced now, and I will not write about that, either.

What have you learned about yourself through your writing?

Oh my goodness. I’ve been a writer since I was a little girl, and nearly every bit of who I am is shaped by reading and writing. Blogging is a sort of exercise for offline writing, but there have been plenty of times when my posts take me by surprise — they are far more powerful than I had thought or reach and resonate with people way more than I had intended or imagined. I’ve learned that I am quite skilled at articulating a certain kind of caregiving that might not always appeal to every reader but that definitely resonates with many. It’s part duty and obligation to my fellow caregivers, part intense need to articulate and share these often difficult experiences and part deep love of the writing process itself that keeps me posting almost daily.

Favorite blogs, when you have time to read?

Reading is really the only constant in my life, and I am a voracious reader of fiction. I have a stable of blogs that I read daily, as well, (you really have to nurture your community to be nurtured in turn!) and those people are my community. I have met many of them and have formed deep friendships with several over the years that are as rich as any friends I’ve had in my lifetime. I won’t single out any blog in particular, but you can go to my blogroll on the right sidebar and see the list.

What’s the best thing about blogging?

It’s the best exercise for offline writing I can think of — you can throw stuff up there, get an immediate response and be inspired by others’ encouragement. Mostly, though, the best thing is the incredibly beautiful community that I’ve nurtured and been nurtured by over the last eight years. I truly love these people and feel secure in their love for me.

What’s the worst?

Every now and then I get a vicious comment from someone who doesn’t just disagree with me but rather attacks me personally or my family. They’ve come from anonymous people and even from family and are always deeply unsettling. I am generally someone of strong opinions and have a tendency to be sharp-tongued, so when there’s conflict on the blog I try to calm myself, not to react immediately (which is my natural wont) and take seriously the person’s complaint. I try to explore my often visceral reactions to these criticisms and attacks, figure out what truths, if any, are in them and work them out openly. They take a lot out of me, though.

What’s next?

I have no plans to stop blogging. I have plans to pick up my manuscript that I worked so hard on last summer at Hedgebrook and finally shape it for publication. It’s a looooooooooooong labor of love, and maybe one of these days I’ll hold it in hand.

Amy’s book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published by Woodbine House this spring and is available through Amazon, Changing Hands Bookstore and Chevalier’s Books. For information about tour dates and other events visit myheartcantevenbelieveit.com and here’s a book trailer.

What World Down Syndrome Day Looks Like in My House

Amysilverman — Mon, 21 Mar 2016 14:35:28 +0000

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

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

Another battle. I sighed.

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

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

“Hey Mom?” she asked yesterday afternoon.

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

“What should I be when I grow up?”

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

The world gives her a tough time.

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

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

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

I considered the hard line. Then reconsidered.

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

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

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

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

My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome

Amysilverman — Tue, 09 Feb 2016 17:53:55 +0000

I have some news.

I wrote a book.

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

So if it sucks, that’s on me.

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

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

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

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