Daisy's Night Out

Trip Start Oct 22, 2009
Trip End Apr 04, 2010

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Flag of United States  , Arizona
Wednesday, December 23, 2009

People who don't know her, haven't been plowed under by the craziness that's endemic to living with Down Syndrome, they don't really get it.

They smile and say it's sweet when she hugs her mom or says thank you.

But they haven't seen the times she drowned out the choir's practiced notes with her slightly off-tempo, but surprisingly in-tune, gusto. They haven't felt the heartbreak when she's been asked NOT to sing in the church choir anymore...haven't had to tell her no, Daisy, not this time, when she tries to get up and go sing with her friends.

And they haven't seen how she makes her 12 year old sister cry because she doesn't want to walk anymore...how she just sits down in the middle of the sidewalk and won't go on, making said sister very late for school.

They haven't seen the quiet brother get left to play by himself because she required so much work and he required so little.

Daisy has always been a family project because nobody can do a Daisy alone.

But now she can read a book, order off a menu, cook a simple meal, and fly alone in an airplane all the way to Arizona Phoenix. She calls it that--Arizona Phoenix--because that's how her brother taught her the states and capitals.

Daisy, what's the capital of Arizona? Phoenix! What's the capital of Hawaii? Hono LU LU!! She knows them all. Not because she's any kind of savant genius, but because she's copied them over and over for a dozen years into mountains of notebooks. If you stacked up all the notebooks Daisy's filled with her states and capitals they'd pile up to the peak of your house.

But she's way beyond that now. You can maybe get two states out of her before she's over it and sits there staring off into space again. Now she shows her boredom by teeth chomping like a runaway freight train. It freakin' CRAZY that she makes me, so I try to keep her engaged.

Like the ballet last night. We'd gone shopping for new clothes, done our hair, painted our nails, taken our picture and left Bob behind. It was girls night out, and while not quite like a night with the Divas, it was fun.

In a nod to our Russian Connection (Kari) we went to the Moscow Ballet's Great Russian Nutcracker at the Dodge Theater in downtown Phoenix.

Daisy LOVED it. ALL of it. Being pure girl she loved the shopping, the nail painting, the music, the excitement, and the dancing. She was all smiles. She clapped at all the right times, refrained from singing along (yes, I did pick the right presentation for that, didn't I? It's kind of hard to sing to the Nutcracker) and didn't once have to get up to go to the bathroom.

But the one thing I didn't think of was the adjusting of the skirt and blouse. Who knew new clothes could need so much fussing? First we fluff the skirt, then the other side, then the shirt--the hem, the collar, and by then the skirt needs it again...and on and on forEVER. I tried holding her hand--she fussed with the other one, tried admiring the nails--yea, fine mom, and it's back to the adjusting.

So we played tic-tac-toe. AHA! That was the ticket! Game after game until intermission was over and we could end with the fluffing.

What a night. Daisy's a riot.

Next I'll have to tell you about going to see Christmas lights at the Mesa temple. Sweet.
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shawn on

Great post. Makes me miss all you guys at Christmas! :(

Karen Lemcke on

Christmas needs family. The happiest time of the year is pretty sad without it. Hold'em close, before they run off to be cowboys or truck drivers or whatever it is kids want when they escape from home.

Kari on

Sweet post, Mom. It made me cry. And I LOVE the Nutcracker. I was so missing it this year, I bought a recording of it. It doesn't come close to seeing the production. However, as Shawn (and John!) can attest, most stateside productions are pretty bleak--nothing like the real Russian ballet. Wish I'd been there with you. And what a perfect show for Daisy. Glad you're having fun,

bobnkaren on

Thanks. We've been through alot with that kid, haven't we?
And speaking of ballet, well, coming off of productions ala Billings, I thought it was superb. They had local children in it too, which was a nice touch, but it was apparent which was which. They were point ON, precise, gloriously smooth, in-character every second. I could have watched it again and again. Not for me, the ballet critiquer's role, but if I were trapped in a room of chocolate covered macadamia nuts and told I could eat all I wanted or go see this nutcracker, I'd be outta there.

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