Life of a little girl with Down syndrome

Big Sister Eva

Eva is a big sister! Ok, so she became a big sister 7 fast weeks ago but I’m lucky to be typing this a warp speed while the baby sleeps in the battery-powered god send of a swing for the next unknown minutes. I’m intermittently sucking on a strawberry Tootsie Pop to keep my blood sugar from dropping to shaky levels because I haven’t had time to eat since breakfast three hours ago. Blog first. Then eat.

Little Leila Jeneen was born late February in a beautiful, complication-free labor and birth. I’m proud of my body and mind for bringing her into our crazy but loving family without medication. Hard work, for sure, but not so bad, really. (There’s some hormone that makes a mom forget the details of the harder moments, isn’t there?) Recovery and the early weeks of adjustment have gone well. Or, I should say, they’ve gone as they should for having a newborn. Part of this outlook is that I’m incredibly sleep-deprived. You know, sleep deprivation of this duration acts very much like a sedative. I’m tired; I know I’m tired; my body aches like I’m tired–I just don’t care. Also, sleep deprivation brings out a unique kind of humor in me. The dry is dryer. When I can find the words at all, that is. Much of my brain has turned to dandelion fluff and drifted off on the sunny Spring breeze…

**shakes head to stir the hamster on the wheel in my head back into motion**

With patience and compassion from us, Eva is learning how to Be with her new sister. Already, I can see that they ¬†adore and are fascinated with each other. Eva has a very intuitive way of comforting Leila when she’s fussing for one of myriad reasons little babies fuss. She puts her hand on Leila’s belly and sits very still and quiet. Leila stops fussing and stares at Eva. A smile brightens Leila’s face and Eva giggles. Eva sings to Leila a long medley of songs from school, including quietly-played instruments. Leila stares, rapt. Eva shows Leila her alphabet flash cards. “Look Leila, what is it?” Eva takes Leila’s fist and taps it on the card “‘A’. Air. Plane. Good job, Leila”. Leila stares at Eva, wide-eyed and intrigued (confused?) The process repeats exactly the same way for the next letter in her pile.

Eva has become more independent, out of necessity, which makes me very happy. Eva is happy, too, and proud of herself. There are moments of insecurity and anger, naughtiness and time outs. Eva acts up, too. Ha.

Well, the baby says I have to wrap this up and figure out what she needs–and needs right now! Amid the diapers and laundry and naps that don’t happen and days that slip away, I’ll update on Eva’s happenings again soon.


Welcoming Winter…

…sans snow, so far. We’ve seen some fat, sloppy rain here and there but no real snow. Hmph. The National Weather Service has been talking about the “threat” of snow (why a “threat”? Can’t it be a chance, possibility, likelihood? Snow is not evil and threatening). Anyhoo, here’s what we’ve been up to the last few months.

Eva took swim lessons again through the Parks and Rec Dept. Here she is with one of her teachers.

I took Eva to a local production of The Nutcracker. Nervous at first, but by the second half she was wanting to dance in the aisle. We compromised by letting her hop around in front of her seat (there were empty seats around us).

The beautiful ceiling at the Mt Baker Theater before The Nutcracker started.

Eva and Jerry found Santa one Saturday at Yeager’s–one of her favorite toy stores. She’s been hesitant to approach Santa in years past. This was the first time she went right up and started talking to him! Jerry quickly took a pic with his phone before she changed her mind!

Eva also found Santa at the Mall! Again, Jerry took a quick pic before she changed her mind.

I volunteered in Eva’s classroom this fall and worked with some of her classmates during their reading or writing times. Eva was happy to show me her world at school. Here we are at recess!

Eva is very excited for her baby sister to arrive in February. Baby Cookie, she calls her. She’s very sweet and nurturing to her 1-year-old cousin, helping him with his bottle after Christmas dinner.

We hope everyone had a good holiday and Happy New Year! Updates on the status of Baby Cookie soon!

Autumn Fun

First day of First grade! Taking care of personal hygiene.

So excited waiting for the bus on the first day of school!

Mmmm...pad thai at the Farmer's Market. Eva and Daddy go every Saturday!

Visiting our favorite pumpkin farm--Gordon Skagit Farm.

Eva and (pregnant!) Mama at Gordon Skagit Farm.

Here is a selection of Eva’s summer excitement.

We took an afternoon picnic to Birch Bay and dug in the sand.

Eva and Mama at Redondo Beach, WA in June.

Practicing her Tinkerbell scooter skills one early morning at Grandma's house.

At her cousin's birthday party, armed with a water gun and looking warily at her Papa to make sure he doesn't squirt her--again.

Hooray! A new pool!

Ah, summertime relaxing...

Bad Blogger, Bad!

It’s still technically Winter so a post about Winter Break isn’t too tardy. It falls within the two-month window regarding Holiday Blogs. I read that somewhere; it must be true.

Haven’t we all just recovered from our Christmas and New Year holiday hangovers? Tacky decor is stuffed in the attic and forgotten till next Thanksgiving weekend. Holiday pounds are falling off (for some of us. I’m not bragging or anything. If I were, it’d be because I hadn’t gained a few pounds in the form of homemade fudge). Credit card bills are getting paid off and family quarrels are already turning into humorous stories to retell every year at Christmas dinner. And here I go, dragging all this stuff up like I do the used wrapping paper and tissue (Just smooth it out! It’s perfectly good!)

In the spirit of reusing Perfectly Good memories, I bring you: Our Winter Vacation–The Highlights.

Um, *rattling memory* there were play dates, if I recall correctly. Flynn with a super fancy dress because she knows “Eva really likes that kind of stuff”. True. She does. Eva selected a super fancy Holiday (read: Easter) dress at Costco recently and declared that she was going to wear it to play at Flynn’s house. She looks reminiscent of a Peep. It’s very cute. But I digress…

We played at a classmate’s house. He had about 200 Matchbox cars, a race track and a cool older sister. Eva wants to return. We had a few more play dates and dinners with old friends. Went to a Solstice/Going Away party for our dear friends who are off to new adventures in Berkeley.

Eva had been anticipating Santa’s arrival (at the mall…) since November. We told her he wouldn’t come until December. I like to maintain the rare bit of my sanity by ignoring all things Christmas until December 1. I believe it might even make me live longer. Happier, at least.

We went at dinner-hour, to avoid a crowd. Turns out Santa feeds his reindeer at that time so we had half an hour to wait. We went to every little (and big) girl’s favorite store: Claire’s. Oh, the shiny, glittery, feathery, gaudy, tacky fun.

As usual, Eva was quiet and shy with Santa. She sat on my lap on the wide, sturdy armrest and quietly told Santa what she wanted. She politely asked for a Mary Poppins DVD. Daddy snapped some pictures. (The elves charge a mint for their pics and wouldn’t have gotten a “good” one of everyone smiling at the camera. That’s not why we go anyway–it’s about talking with Santa).

This year, Santa gave Eva a special gift–a reindeer jingle bell with a sparkly red ribbon that he gives to only his most special kids. Every time it rings, it means Santa loves her.

We spend five fun-filled days with family in the South Sound. Eva’s shiny new cousin arrived just before Christmas so we all had time to snuggle the sweet wee babe. Eva was delighted that Santa remembered to bring Mary Poppins for her.

New Year’s Eve was spent as in past years. At home. Eva wakes up crying and confused about 11:45 p.m. as the neighborhood gets noisy with fireworks. The celebrants are unaware of the trauma they inflict on our child with sensory issues–especially sudden bursts of noise. So we hold her, shaky and groggy, and sit on the couch to watch the fireworks show at the Space Needle on TV. She loves Seattle and it calms her to see the beauty of the fireworks without the racket. After an hour, the fireworks are all blown up and we go (back) to bed. Welcome to 2011!

Today, Eva and I danced to her Party Mix CD (I made a cd of poppy dance songs from 2005 and 2006 that she loved when she was a baby and toddler). The sun was shining in our bedrooms and we were all smiles. We had a fun little pre-New Year’s Eve rock out party.

In the above video, the first song is a clean version of Hollaback Girl by Gwen Stefani (Eva calls it “the banana song”), followed by SexyBack by Justin Timberlake.

Happy New Year!

I haven’t wanted to say it aloud, for fear of jinxing it or scaring it away like a wild deer (though not the deer in my neighborhood that stare at me and go back to nibbling my roses). But it IS a pretty huge milestone. Eva’s wearing panties! No diapers. I am beyond happy. Beyond.

I can’t say we did anything to make this happen, this time around. Just all the stuff They say to do: potty books, potty video, go with Mommy to potty, little potty chair, set up a routine, talk about it a lot–but not with any pressure! Yeah, we did all of that since she was 2 1/2 and had her first stint of success. But she protested fiercely; it went away. Back and forth a few times. I was out of ideas and tricks; she was getting too old to buy into the games and has never been one to be motivated by bribes. They say it’ll happen when the child is ready–and not before. I had to let it go and trust.

Over the summer, I started telling her, matter-of-factly and without blame or guilt (I hope) that I was done changing her diapers. I didn’t want to do it anymore. I refused to read her potty books to her the sporadic times she was sitting, saying I didn’t think she needed it anymore. She was a big girl and could do this on her own. After a bit, I think she started to believe me.

In many ways, teaching her to use the potty was no different than teaching a typical child. One thing that differed was that her gross and fine motor skills are not as refined as a typical child. So while I was waiting for her to take an interest in using the potty, I worked with her, outside of the bathroom and without mentioning the potty, on the skills she needed to be successful. Signing “toilet” before she could speak (language). Practicing standing up and sitting down, over and over (gross motor). Getting pants on and off (fine motor). She would “help” me go and tell me what to do next. She would flush the toilet for me. She knew what to do, she just needed that secret motivator to get her to do it.

I think peer pressure at school this year did the trick. And the staff work hard with the kids to learn to use the toilet and stay dry. The other two girls in her Supported Kindergarten wear pretty panties and she wanted to be like them. One day, several weeks ago, she came home from school and said she wanted to wear pretty panties, too. OK! We gathered up some hand-me-downs, bought some exciting new Tinkerbell panties and that was it! The first couple days were a little rough, but after that, she has done amazingly well. It’s been rather easy (if you don’t consider the five years and nine months of diapers before that, but who’s counting). Hooray Eva!

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