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Girl in a Party Hat has a New Home…

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A Life Examined — Just a Little Bit More

No sooner had I posted that last entry, than Sophie appeared at the kitchen door.

“I throwed up on Piglet.”

And the couch. And — well, we’ll leave it at that. I got her settled in the bathtub, entered negotiations with Ray about who would stay home (I either won or lost, depending on your perspective) and sat down on the toilet (seat closed) to check email on the iPhone.

There was one from Maya. “Seasons of Love? Really? Amy, are we the SAME person?”

She loves the song as much as I do. I had a feeling. Maya and I have a lot in common, and not just the fact that we each have kids with Down syndrome (Leo is 4 and a half). Same grad school, same religion, same tastes in pop culture. She works in Manhattan, which, damnit, I always meant to do. Most important: We have the same fears and hopes and love, as the mothers of Leo and Ellie, Sophie and Annabelle.

I’ve met other moms of kids with Down syndrome, moms who seem like truly great people, moms I’d like to be friends with, but none I have more in common with — and if you don’t think a mutual love of a cheesy Broadway musical song is an important component for lasting friendship, you’ve never had one — than Maya.

Technically, Maya and I have never met. Only through our blogs. I was going to wait til I knew how to do a link to write about her, and I was going to make the link to her blog — www.everythingforareason-moon.blogspot.com — my first real link — but what the heck. Sophie’s home barfing; no time like the present.

“Mama, why are you laughing?” Sophie asked, looking up at me from the tub, as I cracked up over Maya’s email. “My friend likes the same song I do!” I told her. “I’ll play it for you.”

So I did. Sophie loved “Seasons of Love,” too. We watched the video four times and she didn’t even puke on my laptop.

A Life Examined

Tomorrow, Sophie turns 6. And this blog turns 1.

I can’t end it. How could I end it?

I’ve never been sure just who the girl in the party hat is — it’s changed, really, depending on the day. The truth is that my friend Deborah named the blog when she saw Amanda Blake’s wonderful print of a little girl in a polka-dotted hat. It was that simple. I wanted to call the blog Chocolate Dance Party, in honor of Sophie’s 5th birthday mix, but my friends convinced me that would be a bad idea — too dirty. Imagine the lowlife who would seek out a blog with such a name, they said.

Ah, but I digress. It’s been a year of digressions. But has it been more than that?

I’ve never been good at going back and looking at my old work, so I’m not sure. It’s been quite an exercise, this blog. In some ways it feels like it’s taken no time at all. But the seven laundry baskets in my bedroom overflowing with toys, papers and clothes say otherwise. And I honestly can’t tell you the last book I finished.

I said I’d try to write almost every day, and this will be my 288th post, so I guess that’s pretty good, going just by the numbers. I never did learn how to size photos or do links. Every time I considered it, I realized it was that or write another post. And I wanted to write another post.

That surprised me. I never thought I’d want to blog — I tell my writing students, “Don’t give it away for free!”

But the truth is that I haven’t been giving it away for free. Far from it. I’ve been paid handsomely, this past year. When I started this blog, I was so naive about so many things. And cocky. “Step aside, world!” I thought to myself. “I will blog about my child with Down syndrome! Surely no one’s ever done THAT before!”

Ha! There are so many out there doing it (hundreds? thousands?), and doing it better. And the ones I’ve found have become my community, my support group. I love to make fun of Twitter and mock myself for wasting time on Facebook, but the truth is that social media can be a pretty powerful force, and you can use it for good as well as evil.

It’s been a year. I can feel it. I feel old. My daughters’ grandmother died this year, as did my own grandfather, the family patriarch. I walked a half-marathon. John McCain came THIS close to becoming president. Barack Obama did. After threatening for so long, the journalism industry began its inevitable upheaval in earnest. I decided once and for all to stop highlighting my hair.

And Sophie completed kindergarten. When the school year began, she insisted on leaving the house each morning with a stuffed animal. Now it’s a Junie B. Jones book. They said she’d never write her name. She did that at the end of the first week of kindergarten. To be sure, her handwriting’s a nightmare, and she can’t read more than a few sight words in a Junie B.  book. The truth is that she ends kindergarten still a head or two below her classmates — literally and figuratively.

I can’t pretend she doesn’t. Sophie will never be the same as these kids. She has exceeded all expectations this year — even those of Ms. X, who set hers high — but all you need to do is spend five minutes around her peers to know Sophie’s not really one of them and never will be, as high functioning as she is.

Don’t get mad at me for saying it; I just need to say it before you do.

When Ms. X told me she wanted Sophie to move up to first grade so she could be with her peers, I beamed. I thought that was so cool. It’s a product of the fact that I really don’t read much about Down syndrome, even to this day. It’s all an open, unwritten book for me, for better or worse. I didn’t realize the peer thing was a given — one of the rules — til I was talking one day with Sophie’s occupational therapist.

Yes, she told me, it’s a good idea for Sophie to matriculate with her peers. After all, the social aspect is most important, she explained. Special ed kids are expected to fall behind, so it’s okay to move them up even if  you know they’ll fail increasingly — that’s what special ed services are for. Sophie will fall behind more and more, but she’ll get extra support outside the classroom and that will allow her to stay with her peers.

As I read over what I just wrote, I’m not sure the part that upset me will come across to you. There was just something so clinical and matter of fact in the way the OT said it, as opposed to the way Ms. X said it. For Ms. X, I think, it was a moment of discovery, a happy thing — Sophie has friends! She should stay with them! For the OT, it was just another day on the job. (Not that I don’t love the OT — I do.)

Ah, Ms. X. My eyes fill with tears as I write this. Tomorrow, the security blanket really does get ripped away. It’s not like I’ll never see her again — she’s going to tutor Sophie this summer, we’ll have trips to the pool, even the occasional poker game. And I love Ms. Y, I really do. She’ll be a super first grade teacher for Sophie. (Assuming we get her, wink wink.)

But it will never really be the same as it was this year — this awesome, inspiring, terrifying year. As I wrote long ago, kindergarten was the great equalizer. Sophie came to it knowing so much, if only by rote. First grade will be diferent, no matter how well she’s done in kindergarten. I know that. She doesn’t, and that’s a very good thing.

Sophie. If only I could be Sophie. I’m not saying she doesn’t have her anxieties (how could a child of mine not?) but that 21st chromosome does a great job of tamping them down, if nothing else.

All of this is my way of saying, how can I stop this blog? To be sure, some things will have to change. GIAPH will have to stop reading like a bad imitation of the Nora Ephron movies I love — you know, the ones that track the character (usually Meg Ryan) through various seasons — dragging the Christmas tree in “When Harry Met Sally,” loving spring in “You’ve Got Mail.” I promise, dear reader, to quit ruminating on the holidays — quite so much, at least. We’ve been through them all, you know my position (I love holidays, or at least the merch that goes with them).

And I vow to push aside the seven laundry baskets of crap and unearth the Down syndrome Rubbermaid, filled with all the pop culture references I swore I’d discuss on this blog. I will do that, even though I can’t promise I will watch that documentary again about the man with Down syndrome who loves sex and wrestling.

I also promise to spiff things up, hopefully starting tomorrow. Links, properly sized photos — the works. If only to prove to myself I’m not such a tech dinosaur.

No matter what happens from now on, I will always remember this year. I’ve never in my life kept a journal or a diary. I’ve never tracked the days. I don’t regret not doing it before now, not really, but I’m glad I did it this past year. Maybe it’s the remnants of the flu (still!) but I got all nostalgic last night, trying to fall asleep. Ray offered to put the girls to bed, so I snuck into our messy room and wrote a batch of thank you notes for Sophie’s birthday gifts, and listened to Ray and the girls play way too raucously so close to bedtime.

For some reason, I thought of that song from Rent. OK, shoot me, yes, I like Rent. A lot. Along with the Beatles, it’s the one piece of culture (if you can call it that) that Ray and I agree on. I’m not sure if admitting you like Rent is as bad as admitting you like Cats (I don’t!  I swear! Although it was the first show I ever saw on Broadway, at the Wintergarden. OK, maybe I did like it — at the time. I was young.) but I’ll admit it anyhow.

Yeah, I know that a lot more transpired for the characters in Rent in a year than has for me, this past year, but still, I got teary, thinking of the song “Seasons of Love.” Listen to it, if you can stand it. Here’s a YouTube link.

http://www.youtube.com/watch?v=x8iTeDl_Wug

Hey, you’ve read this far already, so why not? I intend to crank the song one more time and have myself a dance party in the kitchen.

Handmade Birthday, Part Two

Funny, I’m not the only mom blogger fascinated by the whole DIY/handmade/craft trend. I guess that’s not surprising. What’s more DIY than raising a kid?

Over the weekend, I got to thinking about the idea of handcrafting and why it’s so appealing. I had these thoughts as they related to Sophie’s birthday party, but it’s something I’ve been ruminating over for a while. (Oh no, my dear readers sigh, there she goes again — trying to tie high-minded concepts together….)

Indulge me. I have the flu.

Sophie’s birthday party was pretty DIY. Every year, I try to walk the tightrope that stretches over the abyss known as overdoing your kid’s birthday party, but as Ray and I decided a few weeks ago, what kid deserves an over the top party more than Sophie? She’s worked her teeny tiny butt off this year and done so well (this morning Ms. X announced she made it to “benchmark” in her kindergarten testing — and that was even timed, which her IEP doesn’t require). A proper celebration was required.

But no one wants some sort of overdone ho0hah with a full-scale carnival and ponies in the back yard. So we had music and bagels and I limited the “decorations” to a Happy Birthday banner I bought years ago and some hot pink roses I found on sale at Safeway.

Still, I (and others! It wasn’t just me!) went overboard in a few places. My mom designed invites, thank you notes and even did an oil painting of Elmo holding a birthday cake.

Did you know that here in Phoenix, you can actually order a custom designed pinata and have it delivered? For a woman who loves valet parking as much as I do, this was heaven-sent. Two days before the party, like magic, Piglet appeared on the front porch. (www.azpinatas.com — I highly recommend it. Not cheap, but worth it.)

Piglet was so real looking (for a book character) that I worried Sophie would have trouble with the destruction part of the pinata activity. Not at all.

The coup de grace was dessert, and this is where we really get into the DIY thing. My dear friend Kathy volunteered to make all the cupcakes for Sophie’s party.

She covered our dining room table with dozens of cupcakes — mini cupcakes, full sized cupcakes, cupcakes with pink frosting and a cherry inside, vanilla bean cupcakes with salted caramel frosting (really! here’s the recipe: http://www.chow.com/recipes/12129), “better than sex” chocolate cupcakes.

We renamed them “Better than Six” and Kathy left one plain for Sophie, who requested a chocolate cupcake with no frosting. Kathy took at least two days off work to make them; it took her two separate trips to get them over to the house. They looked beautiful and everyone oohed and aahed, but no one louder than me, because I know what those cupcakes represent: LOVE.

To me, that’s the DIY thing at its best.

(There will be a Handmade Birthday, Part 3, because I have more to say but I want to end here on the Kathy Love.)

Handmade Birthday, Part One

Sophie’s birthday party was a success.

And that’s about all I’ll say for the moment, because I’m sick as a dog (hopefully not sick as a pig — I think this is just a summer cold). I have a long, involved post in my head about the whole notion of the DIY aesthetic and why we find it so meaningful in these times. But right now, I need to find a clear surface on the couch and crawl onto it. Ray took the girls to another birthday party, so I’m actually home alone on a Sunday afternoon. Unheard of.

I’ll leave you with the artwork my mother did for the invite to Sophie’s party. More to come.

They Invited Everybody…

…and everybody came.

I don’t know if the latter will hold true, but the former certainly is. Sophie’s entire class is invited to her birthday party tomorrow. No matter what she tells you.

Yesterday afternoon — after the local NPR commentary I did about her birthday was long in the can — my friend Vicki (mother of Anyssa, a classmate of Sophie’s) texted after school:

So, I talked to your daughter and asked her what she wanted for her birthday and she told me that I couldn’t go to her party and I asked her why? And she said because I was a boy! But it’s ok for Anyssa to go! But she gave me a kiss said bye!

Whoops. Someone clearly needed to have another talk with Sophie. In fact, I better go. I see that Ms. X just called.

http://kjzz.org/news/arizona/archives/200905/sofiesbirthday

What Does Your Heart Tell You?

Yesterday morning, Sophie demanded choices, as she always does, so I yanked two tee shirts out of her very disorganized drawer.

Funny — one was a tie dye with a heart in the middle. The other, her “Sweet Heart” tee. She chose the Sweet Heart. I love that shirt, too. It’s got a fairly realistic looking heart on it, covered in sprinkles, designed by a way-cool local artist named Roy Wasson Vale. (He got his start painting signs at Trader Joe’s! You can find his stuff at MADE: www.madephx.com)

Sprinkles and hearts, two of my favorite things. I don’t usually like to think about anything medical (Grey’s Anatomy aside), anything that points toward our mortality, but as a mom I have been forced to look at — and appreciate — the heart. Sophie had open heart surgery at 4 months and 4 years, and yeah, I’ll admit it, I have a bit of a heart motif going. I figure your kid goes through that, you can get away with being a little sappy.

Sophie’s heart is strong. (I hate even typing that — hold on while I knock wood. OK, I’m back.) Ray took her to the cardiologist on Tuesday for a 6-month check up; so it’s funny that those heart shirts emerged the next day. Sophie doesn’t talk much about her heart surgery, though sometimes she likes to recall the dramatic moment when she came out of the anesthesia and croaked, “apple juice, apple juice.” (Not my own favorite moment to recall. That sucked.)

Sometimes we do talk about her heart. Tuesday evening, I took the girls over to an end of the year open house at the school, then we grabbed a bite with Ms. X. As I tried to take Sophie out of her car seat at the restaurant, she announced, “I don’t love you! I love Ms. X.”

I know Sophie loves me. She was tired and cranky (full moon hangover?) and just trying to play me.

But I try not to encourage such behavior (I hate the game my girlfriends I used to play called “Pick Between” — use your imagination — when applied to an almost 6 year old’s loved ones) so I tried something new.

“Hey Sophie,” I said. “Stop and ask your heart if there’s room to love BOTH Ms. X and me.”

Sophie pulled the neck of her dress wide (darn, that’s a cute hand me down), stuck her head inside, and did just that. She emerged with a grin.

“My heart says love both you and Ms. X!” she announced triumphantly. And we went inside to get our El Pollo Loco.