I’ve been tagged

by Jen from the blog, I never thought…, to do this:

List seven songs you are into right now. No matter what they are. They must be songs you are presently enjoying. Then tag seven other people to see what they’re listening to.

This is my first blogging game, so I’ll tell you right now, I don’t always follow the rules. Like, I’m not going to tag seven other people…but if you want to play, consider yourself tagged!

Here’s the seven songs, though, in the interest of being a good sport:

1.) “All Around the Kitchen” (cockadoodledoodle doo, it’s catchy!) by Dan Zanes

2.) Jenny Lewis with the Watson Twins, Rabbit Fur Coat (too many good songs on this CD to choose just one)

3.) Eden Atwood, This is Always (again, a whole CD, I think I’m breaking more rules here)

4.) The Polyjesters, Ka-Chunk!, “Thomas Builder”

5.) Wilco, Yankee Hotel Foxtrot (another CD)

6.) Diana Krall, All For You (CD)

7.) X, “Fourth of July”, in honor of my friend Bonnie, who sings this song beautifully, and she’s about to have a brand new baby girl to sing to any day now…


Lotsa stuff going on…


Barbara Curtis of Mommy Life has posted a call for mother/child photographs. She’s looking for images of mothers and babies/children with Down syndrome to include in a photo montage she’s putting together to celebrate Mother’s Day. For more info, go here.

There’s also a new Special Needs Mama column up at Literary Mama by Vicki Forman. It’s about the special needs mama’s diaper bag; I should say that we don’t have a diaper bag anymore, I’ve slowly moved all our things into a cloth back pack, or sometimes a giant leather purse. In either, I can carry a diaper or two, a small bag of wipes, matchbox cars, crayons and paper, a few lollipops (which are not bribes but rewards, according to Suz), Ibuprophen for myself, keys, wallet, and that’s about it. Certainly, it wasn’t always this way, and Vicki’s column reminds me of those earlier days.

And there’s a new post up at the Gifts blog by Michelle Adams of Snippets, who has a great talent for digital scrapbooking. She’s done a terrific page for her son Matthew, and in the journaling, she’s given words to what so many of us feel our children would say, if given the chance.

And last but not least, Lovely and Amazing’s Emily Elizabeth has a Grains of Gratitude post that includes so much good information, and beautifully articulates so many of the feelings that come with parenting a child with Down syndrome. It’s a moment of thanks, a call to unite, and a parent’s manifesto all at once.

We’re back!

And this is a list of some of what I learned while on our vacation to the Oregon Coast:

1.) On travel trailers, there’s a thingy that attaches the axle, which holds the wheels, to the bottom of the trailer. The thingy has a very poetic name–it’s called a leaf spring.

2.) If a leaf spring breaks at the top of Lookout Pass in a snow flurry, the best thing to do is to unhook the trailer and drive down the pass to the nearest town, which happens to be Wallace, ID.

3.) Leaf springs are hard to find in small mountain towns. You might as well save yourself the trouble and just drive to Spokane, already.

4.) If you spend an unexpected night in Wallace, ID, the Wallace Inn is a lovely place to stay.

5.) If you stay at the Wallace Inn, there is a cable channel that plays SpongeBob Squarepants shows constantly. If you didn’t already know, SpongeBob Squarepants lives in a pineapple under the sea.

6.) All-SpongeBob, All-the-time takes the sting out of a broken leaf spring, if you are eight-years-old or younger.

7.) The Oregon Coast is worth all the fuss over leaf springs, and more.

8.) The Pacific Ocean is indeed bigger than I remembered it.

9.) I saw the whales.

Thanks for all the well-wishes, everyone! The very best thing about going on vacation is realizing how good it feels to be home.

I’m packing raincoats and rubber boots

in case the weather is bad, and kites and plastic buckets and shovels if the weather is good, because we are taking off for a week’s vacation to the Oregon coast. If we’re lucky, we’ll spot the gray whales migrating from Mexico to Alaska for the summer.

I haven’t seen the Pacific Ocean since I was a girl. I told my Dad I’m afraid it won’t be as big as I remember it; he said it’s bigger. As an adult, he said, I’ll be able to see farther, and appreciate it more. I hope he’s right.

In any case, while I’m away, you might take a virtual vacation, by visiting some of my favorite far-away bloggers. Christina writes about life in Austria at Prince Vince Meets the World; Nelba gives us a taste of life in South Africa at Chocolachillie; Suzanne is in Japan, writing Gaijin Mama; Shelley writes Shamptons from her home in Sydney, Australia; Jo writes Sheena Time from Australia, too; and Ramblings of the Bearded One comes to us from Kim in Scotland.

And now, we’re off!

Today is World Down Syndrome Day


and the theme is “Celebrating Diversity”, chosen by Down Syndrome International (DSI), a federation of international organizations and individuals committed to all people with Down syndrome.

World Down Syndrome Day events are planned in Singapore, the UK, Israel, France/Europe, Malaysia, Nepal, Sweden, Oman, Poland and the United States.

Today’s date, 3/21, is significant because people with Down syndrome have 3 chromosomes at the 21st position. For this reason, Down syndrome is also referred to as Trisomy-21. To learn more about Down syndrome, go here.

In honor of today, here’s this:

3 Things I am grateful for:
my family, the blogging community, the opportunity to write my book

2 Things that inspire me:
good writing, springtime

1 Thing I wish everyone knew:
life with a child with Down syndrome is something to celebrate.

Happy World Down Syndrome Day!

If you live in NYC or nearby,

“Jason Kingsley and Mitchell Levitz will be signing copies of their new updated edition of COUNT US IN : GROWING UP WITH DOWN SYNDROME on Wednesday March 21 at 7:30 P.M. at the Barnes & Noble store at Broadway and 66 Street in New York City. ”

This info was shared in a post at Downsyn.com by Jason’s mother, Emily Perl Kingsley, here.

Two writing opportunities

There’s a call for submissions here for an upcoming Seal Press anthology, How to Fit a Car Seat on a Camel, edited by Sarah Franklin, who is seeking family travel stories of 1,000-3,000 words. Payment is $100 + two books, deadline is May 1, 2007.

And Gifts II is seeking submissions from family members of children with Down syndrome, friends, and professionals. Deadline is June 1, 2008. For writer’s guidelines, go here.

Therapy burnout

When Avery was about two, I noticed a decrease in his enthusiasm for therapies. At first, I chalked it up to the “terrible twos,” though this explanation didn’t seem quite right. Then a few weeks later, something happened that let me know we were dealing with more than toddler negativity.

I write about it here for this week’s OpEd at Literary Mama.

I’m ok!

I suppose every family has one: a child with no fear. At our house, it’s Bennett. He’s brave, he’s bold, he’s the child I bet will cause our next trip to the emergency room.

He likes to slide, to climb, to race, to jump. He even seems to like falling; after each loud crash, I hear him say, “I’m ok!”

I don’t know how this custom began. I imagine it started after the hundredth time I rushed over to him and asked, “Are you ok?” He now saves me a step by answering the question before I ask it. It’s not a bad habit to have: periodically taking stock, a quick once-over, reassuring yourself that yes, I’m ok!

And I’m no longer sure who he’s answering. Sometimes, I know he’s telling me he’s okay; other times, I think he’s telling himself. As his skills grow, so does his capacity for creating increasingly complicated situations. I think he surprises even himself.

I’ve always believed a child’s first words are prophetic. Carter’s first word was “mama,” Avery’s wasn’t a word, but an entire phrase, “Iluvyou,” and Bennett?

His first word was “WOW!” followed closely by, “weehaaa!”

The process of turning an idea into a book

Many people have stories inside of them. Here’s a quick outline of how your story might be turned into a book:

Begin writing. There are many books for writers, and I won’t list them here. Just do a Google search and you’ll see what I mean–hundreds to choose from. And if you’re writing a fictional story, you must write the book from start to finish. At this stage, the book is called a manuscript.

Once you’ve finished your manuscript, you can do one of two things: you can approach an agent, who’ll represent you in the next step of the process, which is finding a book publisher. Or you can approach a publisher directly (some of the smaller publishing houses take unagented manuscripts.)

If you’re writing nonfiction, sometimes you won’t write the complete manuscript. Instead, you’ll write a proposal, which is a detailed outline of the book you intend to write. Nonfiction is oftentimes sold by agents to publishers on the basis of a proposal and one or two sample chapters. This is how my book, Roadmap to Holland, was sold.

When you have completed your manuscript, or your proposal, and if you’ve decided you want the help of an agent, you introduce yourself and your work in a query letter. Again, there are numerous books and sites online to help you craft a query letter; you can also go here, to a blog about this very process.

Once you have your manuscript, and your agent, your book will be shared with editors at the appropriate publishing houses. The list of whom to contact is prepared by your agent, and the negotiations are handled by your agent, too. At the end of this process, you will have a contract, which specifies details of your book’s delivery and acceptance, as well as terms for its publication, and also a publication date.

If you’ve written the entire manuscript, the book will be reviewed by an editor from the publisher, and revisions will be requested. If you’ve sold the book by proposal, you’ll begin writing it, as per the terms and timelines outlined in the contract. You turn it in to your editor, for revisions.

Assuming your revisions are satisfactory, the book moves on. Lawyers vet the content; a copyeditor checks for facts and points of grammar. During this time, a cover is developed, too.

Once the book has been vetted and copyedited, the text is typeset and a layout is chosen. The book, in this form, is called a galley, which the author checks and returns to the publisher.

During this time, advance reader copies (ARCs) are sent to book reviewers and other media people. The ARCs are usually paperbacks, often without any cover art. They’re used mostly within the publishing industry, and are sometimes still full of typos.

A proofreader checks the text one final time for errors.

The book is printed, and distributed, and eventually finds its way into the hands of the author, who maybe finally feels like the whole thing has been more than an elaborate daydream.

When the circle is completed, there’s usually just one question left: what will I write next?

Can someone explain this to me?

It’s a cold, rainy day, which is perfect weather for making cookies (come to think of it, any weather is perfect for making cookies). These are the ones we bake, and while they are cooling, the little boys take naps.

Avery wakes first, and asks for a cookie.

I get him one.

He shakes his head, no.

I give him a different one.

Again, no.

I ask, what do you want?

Cookie, he signs.

I take the plate from the counter and lower it, so he can see it. He smiles. He nods yes. He signs thank you, then he, very carefully, chooses a cookie.

Which happens to be the exact cookie I gave him in the first place.

Sweet sleep

Every morning Avery wakes early, gets himself out of bed, opens the door to the room he shares with his brothers, scoots down the hall, opens the door to Tom’s and my bedroom, and climbs up into bed between us.

He’s very quiet; so quiet that I barely notice his arrival. Until he falls back asleep again, in the middle of the big bed, covers pulled up tight beneath his chin, and he begins to snore.

It’s a strong, clear, loud sound. It’s rhythmic and predictable; if I wanted to, I could probably fall back asleep. But I don’t. Instead, I listen to the sound of Avery’s breathing. Here is a boy who once, a while ago, would sometimes forget to breathe, a condition called apnea of prematurity. Here is a boy whom I spent late nights praying over as I held him, please please let him breathe. And here is a boy, now breathing so strongly beside me in the early dawn.

The sound of Avery’s snoring is, to me, the most beauiful sound in the world and I don’t want to sleep through it. Instead, I listen, and watch the light change outside, and think about how far we’ve come, and I say a new prayer: thank you.


Last week, the editor of my book emailed to tell me that they were going to have an art department meeting about the book’s cover. She wanted to know if I had any suggestions, or preferences. The book’s title is Roadmap to Holland, and it’s about motherhood, so you might imagine windmills, or tulips, or roadmaps, or even babies.

From what I know, and what I’ve read and heard, it’s very unusual for an author to have a say in cover development. I took the email as another sign of how terrific my editor is. But I also had nothing more that the obvious suggestions for cover art. (I’m still finishing up revisions on the manuscript, and even thinking about the words becoming a real book requires a leap of faith). My only request: if they chose to put a baby on the cover, could it be a baby with Down syndrome?

They had the meeting, and I received another email asking if I had any photos of Avery as a newborn or an infant. My heart sank. I was almost certain that we did not. The early weeks of the babies’ lives are a blur of tangled wires and tubes and gauze. Avery came home on a monitor; a short while later, Bennett returned to the PICU for surgery. Photographs were the last thing on my mind, then.

I wish it weren’t so. I wish I had a stack of photos of newborns, and another of chubby, healthy infants. Our photos begin at about five months, which was when our lives began to untangle. I don’t know what the lesson here is: other than to say we all did the best we could.