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!

Autumn Fun

I love this time of year, when the bright hot busy summer slides into the quieter cooler autumn. The billowing clouds and multicolored leaves against the crisp blue sky encourage quiet contemplation during a long walk. Our busy summer social calendar gives way to back-to-school routine, tidying up the yard and craft projects on rainy days. That said, we’ve still managed to be quite busy.

My brother visited us from Oregon and we all loved having him here. Eva and her Uncle Tommy had loads of fun playing and it makes my heart smile to see the ease with which Tom interacts with Eva. The absolute attention and devotion he gives to their play time reminds me of how my dad played with us as kids. And his borderline relentless teasing and repeated pokes to Eva’s belly remind me of how he and I “played” as kids. Since I was the pokee, as little sister, I say “played” with sarcasm. ;)

Got your  nose!

Ppppbt!

Eva and I and some good friends visited my favorite pumpkin patch recently. Gordon Skagit Farms in the Skagit Valley is an amazingly beautiful place. (http://www.gordonskagitfarms.com/) Everything is artistically arranged and displayed to the smallest detail. Many of the owner’s rural landscape oil paintings hang around the property and on the side of the barn. There are incredible photo ops everywhere you look. And so, I take lots of photos each time we go there.

Eva and her friend explore the many kinds of pumpkins and squash

Eva chose six apples for us to take home. I chose an armload of butternut squash and some spaghetti squash to make a delicious casserole. This year, Eva was brave enough to see the haunted barn with the witch, her bubbling cauldron and assorted creepy things. We wandered out to the corn maze and pumpkin patch, admiring the 360 degree views of the valley and surrounding hills blanketed with turbulent upswept clouds. We went back the next week for more apples and squash. Mommy & Daughter fun!

This way! To the pumpkins!

Eva composed and shot this photo (I helped her hold my super expensive camera). Pretty good, huh?

Eva and I made acorns one lazy Sunday morning. Get a bunch of fresh donut holes (LaFeen’s sells them a dozen for $1. Or if you’re cute like me, the guy behind the counter will give you 18 for $1). Dip one end in melted chocolate (I used 88% dark chocolate, to cut the sweetness!) Roll that end in chopped peanuts. Stick a pretzel in the end for the stem. Voila! Cute AND yummy!

Eva was only mildly interested in this project but helped me chop the peanuts and ate a few pretzels before getting down from her chair and wandering off to do something more fun. She doesn’t like sweets at all so the finished product was nothing more than a silly thing to make. She did show quite a bit of pride in “her” creations when she took them out to the garage to show Daddy.

HAPPY AUTUMN!

Happenings

In addition to losing her first teeth and starting Kindergarten, Eva has moved up to a booster seat in the car and got a new big girl bed. So much happening.

I found this beautiful solid pine junior loft bed on Craigslist. The standard twin mattress is about 3 feet off the ground. She and I went shopping for new sheets and she chose these grape-colored ones. The rainbow pillow case was a find at the thrift store.

What makes this bed so awesome (aside from the gorgeous pine and solid construction) is that it has a free-standing storage cabinet (below, in pic) and free-standing 3-drawer dresser that also fits under the bed. The bookcase pulls out to reveal a 3 1/2-foot long desktop. Behind the cabinet and bookcase is a wonderful hiding place (or room for storage). You can see a pillow through the ladder. It’s a fantastically efficient piece of furniture.

Eva has spent a LOT of time playing in her room with her new bed and all of its stuff. Every time we go in her room she exclaims, “I have a new bed! Oh! Look at my new bed!” She tells everyone who will listen about her new bed. She’s happy; I’m happy.

Some kids love to walk in the rain with an umbrella or stomp in puddles. Eva loves to sweep puddles.

Wearing her cute ladybug rain boots. She does stomp in puddles, but when she does it, she’s stomp/tap dancing and clapping rhythms.

Soaking wet and happy!

Kindergarten!!

The customary First-Day-of-School-Picture-in-Front-of-the-Garage-Door

Eva enthusiastically started Kindergarten this week. She had a great time getting to know a new school, new teachers, new routines and new friends (and seeing some old friends from Preschool). The staff tell me she has been doing very well with work time and is having fun at recess, in music and at the library.

She’s been anxiously awaiting Kindergarten since she started to spend some time in the mainstream Kinder class when she was in Preschool. By 7:30 a.m. on the first day, she was dressed and dancing and hoola hooping around the living room and making snow angels in the carpet to her Party Mix CD I made for her (her favorite dance/techno and lively pop songs).

So excited she can hardly stand it! (This is at 7:30 a.m.–2 hours before school starts).

Eva is going five days a week for a few hours a day to a public elementary school that has the Primary Life Skills program for the district. I don’t like the term “Life Skills” because it makes it sound like they’re learning how to cook, make their beds and balance their checkbooks. They’re little kids. They’re learning the same things other little kids are learning. The just need a little more teacher time and assistance. I prefer a “Supported Classroom”. So anyway, she is there.

There are two Supported Classrooms at the school with Kinders, 1st- and 2nd-graders combined. One class generally has the Kinders and those in need of more support. The other class, the one Eva is in, generally has older kids and those who have more skills and abilities. She is one of two Kinders in this class with eight 1st- and 2nd-graders. Other Kinders in the district don’t start classes until this Monday, but since Eva’s class has mostly 1st- and 2nd-graders, her teacher said I could bring her this week if I wanted to. Sure! The more school the better!

I’m glad she is in this class and will have the older kids from whom to model. I’m grateful that the staff recognized that she has the skills to be able to succeed in a more challenging environment. And that I didn’t have to petition for her to be given the opportunity to be in this class, which I would have if she’d been assigned to the other class. I am very proud of her.

Hooray for new adventures!

Growing Up and Gratitude

     I’m composing this post in my head this evening while Eva slips into a snuggly slumber in my lap. They’re so sweet when they’re unconscious, aren’t they? My memory recalls moments when she was a tiny baby (though she was never tiny) and I would hold her in my arms in this same wide chair. I would look out the window at the broiling clouds and get lost in thought—or no thought—with Eva’s newborn breath making a spot of my neck warm as she slept on my chest. Soft quiet inhalation, soft sighing exhalation. 
     I gazed at her, memorizing her every millimeter, her every angle. I watched her eyebrows come in and how the deep blue of her irises had more and more pale blue flecks in them as the days passed. The flecks slowly decorated her irises but left a thick deep blue ring around the outer edge. I gazed at her. She gazed at me.  She curled up in my embrace and inside my heart and slept deeply.
     And now, I gaze at my little big girl resting her head against my chest and smile to myself. She is changing, growing so much. 


1.   She has just grown out of her car seat and we put her new booster seat in today. She was SO excited and felt very grown up! 
2.   She’s lost three teeth now (we found the third one in her bed one morning after it fell out overnight) all in a row. She sticks her tongue through the gap and smiles widely. As before, she took her Tooth Fairy money to the Farmer’s Market and gave it to one of her favorite buskers: Richard, a kindly man in a pressed white dress shirt and Carhartt overalls who sings old southern work songs and honkey-tonk country, a capella. 

3.   She has been totally interested in outer space lately. She wants to go there and to learn all about it. I’m ecstatic about this because astronomy is one of my favorite subjects to go on and on about (after meteorology and maps). So we looked at NASA images of the moon surface, the earth, the sun, galaxies, nebula. It. Blew. Her. Mind. I talked about how there is no sound in outer space, which I knew would be really intriguing to her since she is skittish about noise. We got a book at the library about Mars and a Bill Nye DVD about the Moon.  I’m gonna tell her everything she can handle about astronomy. 
4.   Her recent favorite show to watch is Stomp (a dance troupe that uses the body and ordinary objects to create a percussive theatre performance). Everything in our house is a percussive instrument to tap or bang on. We’ve collected an assortment of sticks, brooms, tubes, tubs, boxes and plastic bags for her to stretch her creativity. One of the acts the performers do is an increasingly difficult call-and-response rhythm with the audience. The other day, while we were in the kitchen, Eva was hopping and stomping and clapping, as per usual. She turned to me and clapped twice. Pause. Clap clap. Pause. Clap clap. I responded: clap clap. She squealed and clap-clapped again. I responded. She tried out a few other rhythms and jumped up and down laughing with joy when I repeated her rhythms back to her. Something major connected in her brain with this one!
5.   I was in the shower; had just turned the water off. A little hand pushes the shower curtain aside. She is holding a granola bar. “Here mommy! A granola bar for YOU!” “Oh thank you honey! But I don’t want one right now–I’m all wet.” She stares at me, arms limply at her sides, a granola bar in each hand. She brightens, “I have a granola bar today, too! You help me open it, please?” I tell her I will after I dry off. She stares blankly at me again and toddles off. When I come out in my robe, there are two granola bars (still in wrappers) on the living room floor and she’d moved on to something else.  
6.   She was “helping me” fold a load of towels. I showed her how to fold a washcloth–two steps. She was so excited and practiced over and over and over, talking her way through it. Joy for new small things!
7.   I had a hamper full of darks on the couch to fold. She dumped them out on the couch (Oh! Is she going to help fold?); took the hamper to the floor, climbed in and watched TV.


Eva starts Kindergarten tomorrow. She’s back at gymnastics next week and will be spending an afternoon a week at Montessori soon. I’m feeling blessed, grateful and smiled upon. I was sweeping out the garage the other day and focused on feeling gratitude–not thinking the words or lists of things I’m grateful for–just feeling. 

Near Miss

Today, Eva and I were driving to an appointment. As we came down the busy street by our house, Eva said, “Too fast, Mama. You’re going too fast.” I checked my speedometer and was going the speed limit. “Slow down, Mama. Slow down.” I paused while we talked; slowed some.

A few blocks later we came to a lighted intersection, our green light. I swear my front wheels were on the crosswalk when a car from the other direction quickly turned left in front of me. I slammed on the breaks to miss it. Eva and I were alright, though rattled.

She whimpered a bit in her car seat behind me and said quietly, “Slow down, Mama.” The conversation gave me chills. “Thank you for reminding Mama to be safe, Little Bear.” She smiled, relieved.

Missing: Two Teeth

No really. They’re missing. We don’t know where they went.

Eva lost her first tooth the other day while at summer camp. It was super wiggly but IN when I dropped her off and was OUT when I picked her up. She didn’t know it was gone and neither did the teachers. I’m assuming it came out with a bite of sandwich and ended up in her belly with her lunch…until it comes out the other end. I’m not going to “look for it” but if it shows up readily…well, I don’t think I’ll wash it off and keep it anyway. The idea of keeping her discarded little fangs grosses me out a bit. So to keep one that traveled through her digestive tract…*shudder*. No thank you. Besides, the Tooth Fairy already came and left her a dollar in her little box under her pillow. It’s not required, you know, to present said fallen-out tooth in order to receive the prize. The Tooth Fairy knows she lost her tooth. The Tooth Fairy knows everything, like Santa Claus or a mother-in-law.
So I moped around the other day, feeling bummed about not having her first tooth (her FIRST TOOTH, dammit!) and collected sympathetic outrage from other mommies. I ripped weeds out of the soil by the handful and allowed myself to feel annoyed; to feel that *ping* in my chest that my girl keeps getting more grown up.
The next day, I took Eva to summer camp and talked to the teachers again. They were (rightfully) sympathetic for my loss as a mommy. I warned them, “The tooth right next to the gap is REALLY loose and will probably come out today. I tried to pull it this morning. Keep an eye out”. One teacher, a mother of a young girl who’d recently lost her first couple teeth, was especially determined to catch this loose tooth.
A few hours later, I came to pick Eva up. She ran across the yard to me grinning, “My mommy’s here! That’s MY mmmoommyyyy!” Hug hug, yeah, yeah, yeah. I pulled her bottom lip down. The second tooth was gone. Crap! I turned to one of the teachers, “She lost another tooth?” Blank stare. The above-mentioned sympathetic teacher came over and exclaimed, “She lost it?! I kept looking and she had it! I sat with her at lunch and checked after almost every bite! It was there when she went out to play! I don’t know how this could have happened. I’m so sorry!” Well, thanks, lady. Sorry helps as does the obvious effort she put in to make sure I got that tooth. Alas.
It’s probably out in the yard, mixed in with all the tiny pieces of gravel and dirt and tree bits. Maybe it’s in the chicken coop. Whatever. The Tooth Fairy will still come. She knows all; maybe she knows where these two teeth disappeared to.
P.S. We’ve been talking about this whole Tooth Fairy story as a family, preparing Eva for what to do and what happens. She repeats, “My tooth comes out and I give to Mommy and Daddy! Then in the box, the Tooffairy comes when I sleep and get MONIES! Put in my pig bank.” Ta da! I asked her yesterday what she wanted to spend her money on. She said “Put in my pig bank. We go to Farmer’s Market? With Mommy and Daddy? I give it to violin, singing man, oooh, big bass!” (She wants to give it to one of the buskers at the market. How cool is that?) I love my girl.

Preschool Graduation!

OK, so I’m a little behind here but summer’s just too full of fun outdoorsy things to do (and I refuse to take my laptop outside and ruin all that blessed relaxation). A few weeks ago Eva graduated from Preschool. She’ll be headed to Kindergarten in the fall in a supported classroom (the district calls it “Life Skills” but I hate that term). It’s a class for Kinders, 1st- and 2nd-graders with special needs. I’m excited for Eva to have the older kids to model from. There will be regular opportunities for Eva to spend some time in the mainstream Kindergarten class, too, which she also did this year.
The preschool graduates, families, teachers and therapists met at a local park for play, food and more play. Each graduate received a darling green felt mortarboard and tassel and a certificate.
Picking out a flower for Mommy.
Happy Summer! Look out Kindergarten, here comes Eva!

Busy, Busy, Busy!

Wow, we’ve been busy. No wonder I’m a cross between excited and tired. Here’s a rundown of our recent activities.


Nothing like a game of Chase Daddy Around the Driveway with a floppy 4-foot sapling to start a morning off with giggles.


“Tickle tickle, Daddy!!”

Running running running!

Eva’s school hosted a Special Olympics Play Date for the littler kids. Eva is dancing to music at the Scarf Station; in her happy place.

Another station involved throwing a Nerf football to hit the targets on the wall. Eva has a great arm and hit every target from several feet away. Yay, Eva!

Eva and her good friend, Colin, enjoy some time in a park by our house.

Eva finished another session of gymnastics. She is playing hide-and-seek with me after the class’ final performance.

There are often chair cushions and pillows on the floor as Eva constructs her own gym at home. She is practicing a somersault here. Going up…

…and over! Whee!

Every year, we try to get to Seattle for the Folklife Festival. Lots of music and lots of people to watch. And, of course, the massive fountain at the Seattle Center (that doesn’t look so big from this perspective, but look closely at the size of the people in the background).

The NW Junior Pipe Band performed. They recently went to a worldwide pipe band competition in Scotland and placed fifth!

Eva cheers, “YAY BAGPIPES!!” She lives and dreams bagpipes.

But she also enjoys dancing and grooving to a stand up bass and fiddle duo. One of the many many musicians Eva stopped to listen to (and talk to and smile and applaud).

Just hanging out in the play set at home, being happy and silly.

Happy Spring, Everyone!!
For those of you who knew Eva as a baby, you may recall that she often made a fish face. Like, all the time. It was pretty remarkable considering her massively chubby cheeks.

She did it for a few months and stopped. And then forgot how to make it, couldn’t get her cheeks sucked in enough, her lips puckered enough. Well, I’m happy to announce that the fish face has returned!

A couple weeks ago, she just started making it again. Often. Like, all the time. Maybe they were working on it at school or in speech therapy? At any rate, it warms my heart to see her little pucker-y face again. *muah!*
Eva has always loved books–and now she can even read a few words! She got some new books for her birthday that we love and thought you might enjoy them, too.
Freckleface Strawberry by Julianne Moore
This charming story, with cute illustrations, tells the story of a little girl who “was just like everybody else” except for one thing…freckles. She tries to get rid of her freckles because the other kids, while not unkind, bring attention to her difference. In the end, she grows up, just like everybody else, and doesn’t care so much about her freckles anymore.
I really love the message to this story that even if your situation doesn’t change, you can learn to love yourself for your difference. Even if Eva doesn’t get the subtlety of this message, it brings me peace to know that it’s there.
Llama Llama Mad at Mama by Anna Dewdney
This sweet story tells us about little Llama Llama who goes shopping with his Mama but, due to several reasons, gets mad at Mama and throws a tantrum in the store. The author does a fantastic job showing we adults the little (to us) things that happened to lead up to Llama Llama’s tantrum.
This book has given Eva and me an opportunity to talk about feelings and reactions–Llama Llama’s and Mama’s. She and I have always talked about the “Store Rules” before going into a store. She says to me: No whining, no kicking, no yelling and listen to Mama. So we talk about how Llama Llama doesn’t follow the store rules and what he could have done to tell his Mama he was bored/mad/hungry instead of throwing a tantrum. And the rhyming cadence is fun to read, too!
Knuffle Bunny and Knuffle Bunny Too by Mo Willems
In Knuffle Bunny, we see young Trixie going on an errand with her Daddy. She loses her stuffed bunny and a communication breakdown ensues before she and bunny are reunited at the end. The sequel, Knuffle Bunny Too, tells the story of preschool Trixie taking her special, one-of-a-kind bunny to school only to find that another classmate has a nearly identical bunny. Trixie deals with conflict, hurt feelings and mistaken identity before the happy ending.
Mo Willems is a genius storyteller and illustrator. Like Anna Dewdney, he does a superb job telling the story how a child might by including things adults dismiss as unimportant and using a child’s logic. I am also impressed by his unique style of illustrating his stories. He takes black and white photos of his neighborhood in New York City and draws his characters and selected accessories on top of them.
I hope these favorite stories inspire you to visit your local library or expand your home library. Happy storytime!

Eva’s Gymnastics


Eva just completed her first session at a gymnastics place in town. Her class is for 3 1/2 to 5-year-olds and introduces basic gymnastics movements and equipment. She had a great time playing with girls her age and learning how to do new things with her body. On the last day of the session, parents were welcomed into the gym to see a performance

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After the performance, Eva wanted to show me how she swings on the uneven bars. Her teacher, Kelsey, helps her in the video below.

Everyone got a ribbon!
I am very proud of Eva for doing so well listening to directions, following along, waiting her turn and being brave to try new things with her body. She learned how to do a summersault, walk sideways, hang onto a bar to swing and many other little things. She’ll start the next session after a week break and is very excited. Yay, Eva!
Now, I know I don’t post here as much as some of you in the blogosphere would like. It’s not that I don’t marvel at the joy and my blessings every day. It’s not that I don’t want to share them with you, my friends and strangers. I don’t write here to share every time Eva has a cold or the days when she and I aren’t getting along or the stresses I feel as a mother to this child (which are great sometimes but I have another place for those words). I am keenly aware of airing my family’s dirty laundry for the world to see and, being a private person, I will not do it.
I do not wish to hold up Eva’s accomplishments as a means of comparison with other children with Down syndrome or other disabilities or with typically developing children. One of the mantras I wrote for myself very early in my motherhood with Eva is “Do not compare.” I realized quickly that I would destroy myself and my family if I became consumed with comparing every aspect of her existence with other babies and with the baby I had in my mind that I was “supposed” to be a mother to.
This blog is a place for celebration. For learning, rejoicing, and honoring the things that make Eva the fabulous little girl that she is. I’m not here to prove anything to anybody or to persuade or to garner pity. I am here to share little glimpses into the heart of my girl so that you may feel your heart swell for a moment as mine does every day that I am blessed to have her by my side.
Here are a few examples of Eva’s fabulousness:
–A couple weeks ago, Eva called me, for the first time, “Turkey Lips” and laughed hysterically. It caught me off guard and I laughed, too. I don’t know where she got that phrase or why she thinks it’s funny but she did. She’s only said it that one time.
–(In a breach from my preference to not share medical news…) Last week, we thought she was getting a bladder/urinary tract infection. After she told me her tummy hurt and pointed beneath her (super cute outie) bellybutton, I explained to her what her bladder is and how it works. Basic, simple sentences. She nodded and processed. Then she told the story back to me to further process it. She said “My body make potty and fill (b)ladder, a balloon, fill up, up, up and POP!” She laughed joyfully as if balloons filled with shiny confetti had just exploded in the living room. OK, no, it doesn’t pop. I told her again, realizing the comparison to a balloon was leading her to this conclusion. She told the story to me again, this time to make sure I understood how her bladder works. “Fill up, up, up and…POP!!” Hahahaha!! Whee! OK, think what you want. What’s the harm? It won’t actually pop.
–Then there are the rare and precious jubilant expressions of unabashed sudden nakedness on her part. She even puts her clothes in the hamper when she streaks. She’s so tidy. Or well-trained.
–Yesterday morning, waiting in the driveway for the school bus, she politely asked me to pick her up because the chilly damp wind had picked up. I held her and we listened to the quiet on the street, the different birdsongs. She put her warm hands on either side of my face and nuzzled my nose and giggled. We got to talking about colors and finding things outside in different colors. I said, “Find something brown. Do you see something brown?” She said, “That tree. JJ’s house. Dirt.” I said, “Find something purple.” She said, “Our house!” (Our house is periwinkle). She gasped and said, seriously, with her hands on my cheeks, her face an inch from mine, “Mama! Our house purple (like) fruit smoothie!” Yes indeed, Eva! Eva enjoys fruit smoothies I make with blueberries, among other things. We laughed at her genius.
–This evening, Eva and I were assembling Valentines for her class party. She was practicing lines and circles on a piece of paper while she waited until it was her turn to write (with my hand to guide) her name on each Valentine. I was sitting next to her, writing kids’ names on Valentines. She said, “Line. Line. Across…that ‘H’, Mama!” Oh, holy crap. She wrote a capital ‘H’. She’s never purposefully written a letter before (that I’m aware of). We celebrated and laughed. And then she did it again. And again. And again.
What a charmed life I live to be able to celebrate and laugh every day. Thank you, Eva.

Eva Meets Santa Claus!

This morning, Eva told me she wanted to see “San Ta Clots”. She met him at the Harley shop downtown her first Christmas, when she was 10 months old. She was mildly wary of him but let me hold her in the picture. Last year, her fourth Christmas, we went to the mall and watched Santa talk to kids from a distance of about 15 feet. She was cool with that and when I asked her if she wanted to talk to Santa, too she politely said “No, thank you.”
This morning I told her: Sure! Santa is at the mall. We can go see him after nap. So all day was spent talking about going to see Santa. We talked about how he was a nice, happy man, full of love and kindness. We talked about his long white beard, his hat, his red suit. We talked about how Santa brings special presents and that Eva could tell him what she wanted for Christmas. She practiced conversations all day (“Hi Santa. How are you?” “I’m fine, Eva.” “Merry Christmas, Santa.” “Thank you. Bye-bye. Ho, ho, ho.”) She was psyched.
Waiting for our turn to see Santa!
Having second thoughts…
She chattered nervously as we walked through the mall. She heard jingle bells and wanted to run toward the towering Santa display but held fast to my hand. We waited in a short line and watched the girl in front of us bravely sit atop Santa’s knee and talk and (sorta) smile for a picture and get a little coloring book. When Santa’s lap was empty, he waved a cheery hello to Eva. She waved back but then her feet were cemented to the floor. I took her by the hand, then carried her to greet Santa. I sat on the arm of his chair (noting that it was wide, cushy and sturdy enough for repeated grown up bums to rest on it) and Eva sat on my lap. He was a very friendly and gentle Santa with a real beard and twinkling blue eyes.
What did she tell him she wanted for Christmas? A new book. And peacock feathers. Santa said, “Well, uh, peacock feathers might be a little hard to come by, but I’ll put it on my list and see what I can do.”
Jerry snapped a few pictures of the three of us. Eva said “Thank you, Santa!” and we were on our way. Overall, a very successful meeting for my generally nervous little girl.
Happy Holidays!

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