milestones

Mirabel started sitting up at 8.5 months old. She rolls around the room and smiles like nobody's business. But at 11 months old, she still doesn't show any signs of crawling, pulling up, or feeding herself, whether with her fingers or from her bottle. I found this chart recently and am assured by the totally enormous range of age for these developmental milestones to occur. I have a feeling I will refer to it often!

daymaker

Dear Bella Beana Ballerina,

You are 11 months old today, which means that in the year 2010, the earth is moving on its axis at approximately 736 times faster than it has in the history of the universe.


You are
shine
bright
smile
give
heal
strong
real
chub
grasp
gnaw
soft
cuddle
light
simple
hold
feel
true.


In other words, you are a daymaker.

You bring joy. Reliably. Assuredly. Openly.

To everyone.


Your soft hands grow sharp nails fast. Your sharp nails dig into neck waddles and nearly rip lips off. You explore by feeling - testing, rubbing, scratching, scraping. Holding.

Your eyes love to look at faces. Every human makes you smile. Every one. And then... you make every human smile.


You are
brilliant
warm
desirable
gazing
lovely
wise
peace.


You sit, you roll. You're not tearing up the house or pulling into standing. You're not feeding yourself or even taking bites. You sit, you accept, you churn out smiles. Continually. Daily. Hourly.


You sleep. You cuddle. You nurse and take a bottle. You hair had a growth spurt. You have paintbrush piggies. You grasp your toes. You are surrounded by a multitude of supporters, lovers, people changed and put in awe by you.

I am awed by you.

You are
perfect
my daughter
my baby
extra baby
long nuzzles
fat hands
fine hair
cornflower eyes
patient.


I love you, Mirabel!

Love,
Mama

Do you hear what I hear?

A few months ago we received a call from the local Hearing and Balance clinic to get Mirabel in for a hearing screening. Apparently hearing loss is very common among babies with Down syndrome and though she passed her newborn hearing screen, they like to check again at 9 months old.

I took her in on a rainy day an fidgeted as they poked and prodded her with different implements in her teeny, tiny ears to measure how well her ear drum moves. The technician noticed some blockage and fluid buildup in her canals. We then sat in a sound booth while together. Mirabel wore some stylish headphones while the technician spoke into a microphone that registered on either the left or right side, then gauged her response. Mirabel would turn her head toward the sounds and be rewarded with a light-up, spinning Winnie the Pooh or Tigger.

Turns out, Mirabel's hearing registered at about 40 decibels. A "typical," good-hearing person will register at about 20 or below. So, some somewhat significant hearing loss.

The next step was a referral visit to the ENT. We met with Dr. Beck last week. She is renowned in the area and I was under the impression that we were fortunate to get in on such short notice. After another poky-look in Miss M's eensy weensy ears, she determined there was indeed a lot of blockage and some hearing loss as a result. She scheduled surgery to implant ear tubes five days later.

That day was today, and John and I left home this morning at 7 am with a sleepy, hungry (she wasn't allowed to eat or drink after 1:30 a.m., when I woke up to nurse her) little girl. We waited and waited with other young children and quiet parents until Dr. Beck scooped her away. So suddenly.

Heading in.

The procedure lasted all of eight minutes, and then she was back in my arms, which were resting on a pillow, waiting for her. It was miserable. She began to fuss and then wail - still under anesthesia. I couldn't nurse her until she was fully awake, which took at least five minutes. We had heard the other small children whining and bawling along the curtained posts on the small corridor, but since Mirabel rarely fusses I guess I thought she'd come out of it okay. It was such a hard thing to watch - my tiny sweetie churning miserably in my arms.

In true Mirabel fashion, though, she ate, woke up, and smiled, and we left about ten minutes later, carrying our souvenir of a tiny pink plastic gas mask. I think I'll make it into a Christmas tree ornament.

After a deep two hour nap, Mirabel and I had the day to ourselves. At one point I put her in the portable crib by the picture windows and I stood in the kitchen, where I softly said her name. She turned her head! I truly think her hearing has already improved.

We are flying to San Francisco this weekend (Mirabel's first trip!), and they assured me that tubes are actually a great thing for flying since the ears automatically equalize. We are up for anything.

Goose and Moose

What's in a name? I'm worried that Mirabel may start to think that her name is Gorgeous George, because for some inane reason that's what I've been calling her lately. When I peek over at her shining face in the morning I say, "Well good morning, Gorgeous George!" What the...?

While Grampa Peter was living here, he helped create appropriate monikers for Mirabel such as Chubbers the Love Chimp and Fatty the Fat-Faced Ferret. (Hey, she's got cheeks.) Others from my mouth include Tooters, Toots McGee, Bella Bean (I think that's my favorite), and - most recently - Moose.

It's partially because of the antlers she's been sporting on her suddenly-grown-out hair.

Ol' Gorgeous George

And it's partially because it rhymes with Goose, which is what John has been calling Luciya forever, and which she actually answers to. (She answers to Bean, too, when I call her. Bean, or Beaner, or Honey Bean, or Beans). Goose, Goosey, and now her sweet lil sibling Moose.

daddy's girl

eLLe - 43 months

Dear Luciya,

Happy 43 months. Let's have a little talk.

Luciya: "Awight!"

Luciya: "I love you, Mama."

Mama: "I love you, too."
Luciya: "I love you so much you get burned by a walrus."

Luciya: "Say dilly dilly doe."

Everyone in the car: "Dilly dilly doe."
Mama: "What is that?"
Luciya: "It's a new word I learned in preschool.
Mama: "What does it mean?"

Luciya: "It means you don't eat the trees, you just climb the trees."

Luciya: "Mama, I ate your armpit."
Mama: "You ate my armpit?! How did it taste?"

Luicya: "Like watermelons."

Luciya: "When Halloween comes again next year you know what I'm going to be? I'm going to be a building. The building where Dada works. And Mirabel is going to be a little tiny fish."

This year, they were a Rainbow Fairy and a pink kitty

Luciya: "Puke was at Kindergarten."
Mama: "What was Puke doing at Kindergarten?"

Luciya: "Puking."

Mama: "Ah."

Luciya: "I'm the Kindergarten teacher."

Mama: "How many students do you have?"
Luciya: "Five."

Mama: "What are their names?"

Luciya: "Puker and Kinder and Nala and Nobody and Nama."

Forty-three months, three years and seven months, closer to four. Thank goodness, because the topic of conversation that dominates 99% of conversations - aside from getting burned by a walrus - is "my next birthday!" When Grams and Grandpa Peter head to the store you're sure to request "party hats for my next birthday!" The outfits get planned and changed. The menu has gotten quite extensive. So far it includes, sparkly cake, purple cupcakes, muffins, and chicken soup with cream and guacamole.

Age forty-three months is when we've started giving up the daily nap. It's been so very much easier than I ever thought it could be. I like the two-hour space in the afternoon. But nighttime had turned into a near-bloody brawl and left everyone pulling their hair in exasperation with your feisty refusals to fall asleep before 9:30 pm. And now, evenings are peaceful. And the days really aren't so long!

In fact, the afternoon hours, coupled with the cold-cold days, has meant crafting hours galore. In the past couple weeks, you and I have created stained glass jars, picture frames from Popsicle sticks, homemade play dough (and ornaments from the dough), gift bags, and spent endless hours with stickers, markers, crayons, puzzles, paints, and clay. It's my goal to have a completely homemade Christmas this year, and things are looking charmingly good.

When you were two years old, I can't tell you how many times I got warned about how much worse three was going to be. But I've got to say, I'm not going to be one handing out those warnings. Yes, you're deliberate, and feisty, and demanding, and rebellious, but more than that you're adorable. And sweet. And kind and smart and helpful and creative and funny and endearing. You love to love... so much we often find ourselves getting burned by walruses. My heart is effervescent when I think of all the delight you bring me. I love you so.

Love,
Mama

gesuntheit!

Bucky

Though she manages to chomp down - ouch! - while she's nursing, at 9 months old Mirabel still doesn't have any teeth. Her pediatrician still suggested we try some grain puffs as a first snack; if anything to get her to practice her pincer grasp and hand-to-mouth coordination as occupational therapy.

So we did.

And it stuck to her toothless gums.

And she had "teeth."

And we laughed for days.

Ah, Mirabel, I hope you'll be able to forgive me for taking pictures and laughing til I cried before assisting you with your first Happy Puff. I look forward to chuckling to these photographs together one day.

.

I love you, Mirabel!

.

Love,

Mama

.

Stronger

The latest illumination:


At 8 1/2 months old, Mirabel is sitting up.

And she's all, "What. What's the big deal? Yeah, yeah, I'm sitting up. Wait'll you see what else I can do!"

And I can wait, because all this waiting, and working, and watching, and months of "extra baby," have been an insightful journey. She may take a little longer to do something, but she will do it. She will. And that's that. I can adapt right along side her, and cheer her on.

We've hit all the goals - however seemingly simple - I've thusfar set for Mirabel. Holding up her head. Rolling over. Smiling. Taking a bottle. And now, sitting up is here. Crawling is next!


We work with Mirabel's physical therapist every other week. We've got pages of notes on pressure points and massage techniques and strengthening moves, and we practice them all (though admittedly not as diligently - or daily - as we probably should). We pull out the vinyl "break dance mat." We press our fingertips along the muscles of her arms and legs, hands and feet. We spread our fingers wide over her little belly and do the "sun and moon" massage. We keep her legs flexed.

Sometimes she doesn't like it at all.


And sometimes she's cool with it.


The point is, we're going to do what it takes. We'll do everything. Together.


Recently, Mirabel and I started attending a sponsored Mommy and Me class at the Little Gym. (Thanks, Pat and gang!) Though her classmates are all crawling and reaching and bobbing and grabbing, sweet Mirabel is content to lie and observe. (Except now that she's sitting. She'll sit and observe.)


At the Little Gym we stretch and roll and put weight on our feet and ride the air trac and fluff the parachute. I can feel her little foot muscles flexing. I can see her tracking the brightly colored balls with her green-blue eyes. We can do just above all the activities, except for forward rolls. There is apparently an upper-spine thing we have to be aware of. But she digs it. It is good.

Though her physical progress is slower than typical, Mirabel is growing and changing every single day. Her face is changing. Her eyes are brighter. Her grasp is stronger. Her thighs are fatter and more delicious than it seems possible for a baby's thighs to be. The milestones are there, and they're sweet as her favorite apples-n-apricot baby food. Keep it up, girl. Keep growing.


You're amazing.

gems

Probably the best part of hanging out with a three-and-a-half-year-old all day is the nuggets of unintentional delight that come out of her ridiculously sweet mouth.

Some recent observations/comments from Luciya:

"Mama, why are elbows called elbows?"

"Look at all the big clouds in he sky! That means my next birthday is coming up!"


{In the car, Mirabel asleep in her carseat}:
"Oh, look, Mirabel hears the music while she's sleeping - her little mouth is dancing!"

Mama: "Is your new preschool called Happy Days because you're happy there?"
Luciya: "Yes, and sometimes it's called Sad Days."
M: "Why is it called Sad Days?"
L: "Like when you eat too much food in your tummy and you're sad. So it's called Sad Days sometimes."


"Mama, I have a little beard but I'm not a daddy. It's a girl beard."

Mama: "How was school today?"
Luciyas: "I was sweaty."
M: "Why were you sweaty?"
L: "Because it was hard work."

"You want to hear the song about Mary? Okay. Mary had a wife and she fall down and bonked her head and it was blooding and she needs a hair Band-aid, the end."

your caption here

bel: 6 months

Dear Mira-Mirabella, Mira-Mirabel,

Dear Beanie Baby-Beaner-Beanpole-Bean Tree-Fats McGee,


You are more than half a year old now. While that in itself is stunning, I am more amazed that the two weeks you were in the NICU still seem like they took longer than the last six months did.


Six months old! Wait... six and a half months old! Oh, sweet, darling, mooshy gusher... what a half year it has been! And I am wiser, serener, and filled to burst at the seams with ludicrous love because of it. Because of you.

Yes, you have Down syndrome. Yes, this defines you. Yes, you are my daughter with Down syndrome. You have Down syndrome, I'm your mama, and Bob's your uncle. (Not really, but isn't that a saying?)


But for all intents and purposes, Miss Mirabel, you are a PERFECT baby. I fully recognize the fact that I am the proud mommy bear of a well-behaved, mild-mannered, happy, smiley, agreeable, well-sleeping, good-latching, multi-chub-rolled, day-making child. You sleep when I want you to sleep. You sleep through the night, in your own room, for ten straight hours (minus a two-week hiccup of 3 a.m. wakings. Not a problem. Don't sweat it). You break into a full-faced beam when I peek over your crib railing to fetch you. You let anyone hold you. You cuddle. You rarely cry. You're pleasant.


I recognize how lucky we are to have such a delightful baby. I recognize and am grateful for all of this and so much more that you are.

Yes, you have Down syndrome. Yes, that knowledge is constantly on my mind. Always. Forever. Undoubtedly. It's okay.


It's okay.

Because you're healthy, and you're happy, and you have blue eyes (!), and you roll over in both directions, and you can *almost* sit up for one second, and you're crazy about your big sister, and you've found your toes and they're quite delicious. Hooray!

Am I all smarmy and gooey and sugary and delighted? So what if I am... 80% percent of the time? I am a proud and happy mama. But.

But. Girl, take a bottle. Please, find one of the 85,000 nipples we've invested in an suck on it! I love that you nurse so well. I love, love, love to breastfeed you. But sometimes, Mama wants to know that I can be away from you for 3 or four hours, if need be, and that you can be fed.


You are simply not having it. All the physical therapy we practiced for weeks when you were three months old, when we got you on a bottle for a while, has gone out the window, and you are now a six month old who can arch and refuse and whimper and put her chubby foot down. Uh-uh. No bottle, no way, no how.

So. That's the next step in your physical therapy regime, which we get to experience every other week. You will get it. You will.


So far, we have met all of our physical therapy goals. Holding your head up, rolling over, reaching for toys... check, check check. Next is sitting up, and I'm confident you'll be doing that in the next month. Which will be nice, because while it is so pleasant to have some extra "baby" time, you're getting to be a bigger girl (15 pounds! 25 inches!), and it would be nice to plop you down on your fat little bottom instead of lying you on your back.


Thank you for making me smile, every. single. day. Thank you for the long, soft, sweet nuzzles in my bed every morning as we nurse. Thank you for choosing me to be your mommy. I'm madly in love with you.

I love you, Mirabel!

Love,
Mama

The Beholder

When I look at pictures of my daughter I have to make sure my mouth is closed. Otherwise, I’m afraid my heart might fall out and go flopping around all over the desk, and I’d have to swallow it back down again.

I am stunned with love by this child.

I am humbled by her peacefulness and grace. I am mesmerized by her open, consistent delight. I am hypnotized by her falling-deep blue eyes, the color of an autumn storm sea.

I have been changed because of a baby with Down syndrome. I am a different person.

Mirabel, sweet, soft, wise and gentle Mirabel, is a plump snugglecake of True Love. She is an armful, a cheekfull, a deep double-lunged breathfull of Hope and Acceptance, all bundled up in a sixteen pound peach fuzzed giggle.

And it is the same when I peruse your blogs and read the snippets you post and look into the soulful faces of these life-altering little nuggets who are gracing this plant every 770 births or so. Do you feel it, too? It’s the eyes, isn’t it. It’s the tender tolerance behind those almond-shaped eyes. I want to scoop up all these children and nuzzle them for days and days.

You parents out there wouldn’t mind, would you?

I am so grateful to the universe for gracing me with a child to behold with such profound leaps of wonder.

Blessed be.