Enormous Things

My Bel

2012-02-02T16:28:00.001-07:00

SnowBunnyAngelMan

2012-01-18T21:49:00.005-07:00

It finally snowed in Boise. It was thick and soft and crusty. Perfect snow for snowmen and snow angels and knocking drifts off every surface. Luciya, Mila, and I spent a glorious hour outdoors.

Best. Workout. Ever.

The crooked apple tree.

Mila went nuts.

Eventually we just let our hoods fall down and got icy-wet heads.

Then we came in with our pink rosebud cheeks and had a warm bath. And made cookies.

And watched a movie. "The Polar Express" is kind of intense. We had no idea. Safety snuggles were necessary.

The girls and I stayed at home all day today. This is the first time this has happened in one million years, and it was cuddly fun. We made popcorn and colored pictures of flowers and wore our pajamas all day.

Lucky-yummy-mommy me.

Two Down

2012-01-15T22:17:00.010-07:00

Dear Mirabel,

I think a child's birthday is a chance for its mother to enter a magical and nostalgic time warp. Is there another event so dramatically impactful? Suddenly I find myself awake at 4:30 in the morning this January 15th, and the vivid images of the agony of bringing YOU into this world surround me. My January 15th will forever be assoiciated with the long hospital corridors, the groans echoing off of the bathub walls, the shock of hearing "It's a girl!", the surreality of not being able to hold you once your umbilical ties to your comfortable realm were broken.

My midwife said at the time that babies with Down syndrome often have a longer time figuring the way "out." You decided to flip breach once I was already in labor, effectively tossing my ideas of laboring at home, while watching Golden Girls reruns, while bouncing on the stability ball, out the window.

I was immediately and unexpectedly admitted to the hospital at noon on January 14th, where the doctor on call was able to successfully perform a version and turn you, but as a result my labor had to be stopped. So while the stability ball sat unused in the living room and Rose, Blanche, and Dorothy waited expectantly in the DVD player, I walked the halls with your father, desperately trying to get labor started again. At 5 pm, my acupuncturist came in and got things going a bit, but not enough, and by 10 pm I finally consented to Pitocin. It was so maddening for me to have been in natural labor all morning, wandering through Kohl's to pick out an overnight backpack for Luciya while the secret thrill of the first contractions made me pause in the aisles once or twice, to look forward to spending the bleak winter day waiting for the right time to welcome you, and to then have to spend the actual day indoors, unsure, and no longer in labor.

I helped pull you into the world at 4:53 a.m.

Then everything began, and at the same time everything stopped.

The nurses, the lights, the midwife, the explanations, the white buzz in my ears, the wash of serenity, the ache, the buzzing again, the nurse coming in to punch me in the uterus, the look on John's face, the need to sleep, the need to hold my baby, the rush, and the sink, and oh God why does that nurse have to come punch me in the uterus again?!

Fast forward.

And you're two years old today.

While I can't imagine that today's events will plant themselves with such resolve in my mommy brain, I can tell you that today you were celebrated by a dozen people who love you.

There was cake.

And there were gifts.

And there were songs and toasts.

We were celebrating a remarkable two-year-old, whose short life has already inspired us all to appreciate LIFE in a way we can all admit we did not know before you.

We celebrated your mouthful of teeth, your ability (as of last week!) to crawl on all fours, the signs you can use - Thank You, More, Please, Eat, Mommy, Daddy. We delighted in the way you smashed fistfuls of cake into your face.

We held you and praised you. Inwardly and for all to see.

January 15th, 2010 was a new moon. According to astrology,

"When the Moon is new, the Sun and Moon are aligned in the same sign, and a powerful energy portal is opened. New Moons are a great time to set intentions for things you'd like to create, develop, cultivate, make manifest. ... What matters is that you're committing yourself to your vision, and open to receiving guidance, healing, support from Spirit. ...

The new Moon has a more inward feel, has a void or empty quality, and therefore can be frightening to those not comfortable with uncertainty. Can you learn to trust the dark? It's the moment when the old passes away and the new is not yet here. That's why it's a powerful time for sending out your prayer, wishes, desires to the Universe."

There was certainly a lot of praying, wishing, and desiring that happened that night. You stayed in the hospital for two weeks and came home to us on the full moon. And as we all know, "Full Moons are for taking action and celebrating the fruit of your efforts." Our prayers and wishes and desires are coming true in you, Sweet Mirabel.

Hooray!

I love you, Mirabel!

Love,
Mama

2011: Luciya

2012-01-14T11:05:00.000-07:00

For vivacious Luciya (who is an AWESOME four-year-old; suck it 2.5 - 3.5), 2011 can best be summed up in her own words. And I quote (from notes I've taken on my phone throughout the year):

"My foot always asks me, 'Luciya, do you want to go on a sailboat?' and I always say, No."

"Mama, sometimes moons blink."

"I know the truth about everything. I know about planets. Planets are good for eagles to sit on."

"Uzana [her doll] doesn't care for California because she might poop on someone's head. Uzana has lots of chicken songs."

{On her birthday}: "You know what I wished for. I wished for all the people to come over to our house and make it bigger and take all the earth home and the rainbows."

"I'm gonna tell Mirabel a joke. Mirabel, why did all of your tooths shrink and you swallowed them?"
Mirabel: "aaaahhhhgge."

"Wouldn't that be funny if Mirabel swallowed a zebra and her tummy got all big and fat and she diarrhead the zebra out and then the toilet sneezed!"

"Mirabel, once upon a time there was a little girl named Lucy May and she laughed so hard, she made the whole world shake, the end."

"I wish there was a fish that turned into a flower what I could take to a fancy dinner party."

"I wasn't asking for it. I was just wondering if I could get it."

"I want to be a pony acrobat girl when I grow up."

"Next year for Halloween I want to be Toot Barbie."

"Good thing you weren't outside, and sitting on that cat, and eating its fur."

"Do gooses have boogers?"

{A poet and she doesn't even know it!} "My name is Create, and we dance around. When we laugh, we fall to the ground."

{After singing one of her endless made-up songs}: "Mama, do you know what that song is called? It's called The Hopefulness of Joy."

"Do you know I have 100 million talents?"

"I like being a person who is able to talk. If I couldn't talk, then I wouldn't be able to say that I love you. And if I was a cow, then I couldn't say Moo!"

"I'm just gonna say one thing. I love you, Mommy. I love you, Daddy. I love you, Sister. I love myself."

Wistfully... "I like being four."

I like it, too.

I love you, Luciya!

Love,
Mama

The Year Before

2012-01-12T21:29:00.020-07:00

Here I am! Here it goes. For reals, y'all, I want to document this sweet and shining thing called Life with Lovelies in Idaho. (Should I change the name of the blog?)

So, before I ring in 2012, I need to give 2011 a wee shout-out, like, Hey 2011, I really did appreciate you. Thanks for everything.

Highlights.

January 2011

Mirabel turned one year old.

Great Grammy Leona has the first of many serious tumbles.

February 2011

Valentine cookies. Homemade frosting dyed with berry juice, natch.

March 2011

I attended a Stroller Strides enhanced instructor training in Seattle. John came along for the ride, and we enjoyed a couples' weekend exploring the city, which we really dug. Digged. We liked it.

I turned 34. Apparently not a big deal, since I can't enlarge this picture for the life of me.

April 2011

Sister Eryn came to visit again. John posed with his girls.

Luciya Sunshine celebrated her 4th birthday.

And got to go to the dentist for the first time. On her birthday.

My girlfriend Kelly and I took a weekend roadtrip to Durango, Colorado, which included a magical stop at Arches National Park in Utah.

We named her Muscle.

We adopted 3 chicks: Shybone, Hina, and Pokey. Pokey would later succumb to Mila's insticts on one horribly fateful afternoon (I started a blog post called "A Clucking Nightmare"...).
Hina and Pokey are still big, broad, and beautiful egg-laying family members and pets.

Sir Elton John, I presume.

May 2011

For Mother's Day, Luciya and her preschool classmates gave their moms pedicures.

We spent Labor Day weekend at the cabin with Adam, Danielle, the girls, and Michael and Nancy.

Mirabel has just about had enough of your shenanigans.

Meet the mud pie masta.

June 2011

Ton Ton celebrated the big cuarenta y uno.

Mirabel posed as a fairy.

If you're wondering, all of our sweet family portraits, including these and the one of the girls at the header, are taken by the fabulously talented Lala Harms at Shady Lane Studios. She's been our photographer since we won a shoot for Luciya's first birthday.

The See Jane Run 5K with our Running Club.

July 2011

Boating at Lucky Peak

We had weekly "Crafternoons" with sweet friends.

Christmas (pajamas) in July.

My brother married an awesome chick.

We took a fabulous two-week roadtrip (a family first!) to Southern California. Memories ensued.

August 2011

A spur-of-the-moment afternoon hike outside Idaho City.

The Dirty Dash 10K. Filthy awesomesauce.

September 2011

We spent our fifth Labor Day in a row with dear friends at "The Spread" in Eastern Oregon.

Luciya started her second year of preschool with the delightful Miss Jen.

The Women's Fitness Celebration with the LUNA Moms' Club.

October 2011

John and I spent two nights in Sun Valley for a perfect Fall getaway.

Luciya listened very intensely at a field trip to the fire station.

Team Mirabel raised over $1,000 for the Treasure Valley Down Syndrome Association.

The Barber to Boise 10K, again with the Running Club. 56:20 for me.

Arrrrrr ye surprised we were pirates at a fun Halloween bash? More importantly, arrrre ye surprised John wore eyeliner?

November 2011

"The Sunrise Puppet Theater. Only for cold winter days. With hot chocolate."

Maui. A glorious reunion with Maui. And an introduction for some.

December 2011

Luciya was a saucy Wise Gal for her Christmas program.

Sister Eryn helped us celebrate the season.

We were so excited to watch Luciya experience her first Christmas morning at home, now that she "gets" it. And she didn't disappoint. She was sweet, wide-eyed, slow, and savoring every moment, delighting in the idea that there was another present?? to open.

On New Year's Eve we went for a family walk and attempted a self-portrait.

And now, if possible...

Happy 2012.
Blessed be.

New Year's Resolution

2012-01-10T23:33:00.004-07:00

{# 847}....

I WILL start blogging again.

I miss revisiting my children.

I regret that every breath of Luciya's first three years is recorded, but Mirabel gets completely duped.

I want to write about how tonight's full moon should be reflecting off an acre of snow, but remark upon Idaho's bizarre (read: scary?) lack of the white stuff this season.

It's January. So. I have a whole year ahead of me. Let's begin it.

"We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year's Day." - Edith Lovejoy Pierce

Ya hear?

And then...

2011-09-20T14:22:00.002-06:00

I just sent Luciya off on her first playdate with a little neighbor girl. This little girl is as sweet as can be and the two of them play really well together, but we have always hosted her at our house.

She started visiting about a month ago, and will ride her two-wheeler bike (she's SIX) up to our house and ring the doorbell and ask, "Can Luciya play?"

Today the doorbell rang and I said the usual: "Sure, why don't you two go out back and make some mud pies?"

But today the neighbor girl asked if Luciya could come to her house.

Brave gulp.

And I did, I sent her off, on her tricycle, pedaling madly to keep up with her little friend as she careened down the road. I stood at the end of the driveway and watched every pedal, watched Luciya stop at the corner to look for cars, cross, pause, see me down the street, and wave. "Bye, Mommy!"

Why do I feel like crying right now?

A Horse of an Off-Color

2011-09-09T20:44:00.004-06:00

Last year, on our annual Labor Day camping trip, I told a joke. It's a joke I've somehow become famous for over the years, one that requires it be told in an English accent and that revolves around its punchline, which is "horsecock."

When I told it last year to the gathered group, the uproarious laughter that pealed through the camp was enough to wake up the early sleepers, and it went over so well that the next morning I was carted to the neighboring rancher's house, just so I could tell it to him.

This year, I was walking Luciya up to our sleeping quarters through the dark woods one night when I heard the group shouting after us from the main cabin. I turned my flashlight around and shouted back down at them: "What?"

John's voice boomed up: "They want you to do horsecock!"

"Later!" I answered. "I'm taking Luciya to bed." And with that, she and I resumed picking our way through the pine needles and dusty knolls to our quarters. After a few steps I heard "Mommy?"

"Yes, sweetie?"

"Can I do horsecock?"

Sigh. It's late, it's dark, let's not get into it. "Yes, honey."

"I get to do horsecock with you?"

"Mmm hmm."

"Mommy, I can do horsecock with you in the morning?"

"Of course, sweetie."

Quiet walking. Her hand in mine. Her breathing becomes ragged and excited. In a quavering voice she says, "Ine so excited to do horsecock!"

Groooooan.

More walking up through the woods. I can practically hear the little wheels turning in her brain. After a few more quiet steps,

"Mommy?"

"Yes, honey?"

"If we see a horsecock, can we get on it?"

Oy. Vey.

"Yes, hon."

More walking, more silent ponderation. Then,

"Mommy?"

"Yes, sweetie."

"What's horsecock?"

"Ask your father."

Fullbeam

2011-08-31T21:32:00.005-06:00

Mirabel is my snuggler. Well, she's everyone's snuggler. She falls asleep on shoulders and wiggles into elbow crooks. But Luciya has never really been like that. From infancy, she's been joyfully shrieking her independence wishes.

Tonight, though, after I finished reading her the customary three books before bed and turned off the light, Luciya rolled toward me and snuggled. She wordlessly planted her cheek on my shoulder and let her long lashed graze my neck while her soft warm breath ticked my collarbone.

They say the Eskimos have, like, 65 words for love, and I want to know which word they would use to describe the utter okayness that filled the space within her lilac walls, that made a periwinkle butterfly with fat, full wings burst from my chest. If I had a chance to name a Love, I'd call this one Fullbeam. Because I was filled to full with the shine that is the sweetest, lovliest, dearest love. And for those five minutes, with my arm tucked safely around her and my palm against her little ribcage, the world was safe and good.

Then, of course, she rolled away from me, and I got to watch the nightlight glow just barely illuminate the curve of her olive cheek. And I brushed my lips across her forehead and whispered "I love you."

My Fullbeam bringer

Sometimes...

2011-08-09T08:10:00.001-06:00

... you make me feel like this.

bella beana: 18 months

2011-07-15T23:09:00.006-06:00

Dear Mirabel,

You are 18 months old today.

You continue to delight and daymake and charm. But you've got this new 'tude, and it slays us every day:

It's this under-the-brow, pout-lip, all-knowing heart smasher that you've perfected so well that it has *almost* replaced your sunshine smiles. I'm not quite sure when it started, but by now just about everyone who knows you has had the pleasure of being on its receiving end.

Physically, your biggest accomplishment is the ability to scoot in a circular motion when you're seated on your bum. You've started bending your knees while seated, which is huge -- one step closer to putting those fat little hands down and actually covering some ground. But other than that, you are still unable t sit yourself up from a reclined position, and you're not mobile other than rolling. Little steps have taken on such greater significance; your development is just on hyper slooowwww mode. Which only means we get to delight in every little milestone for weeks.

You finally got your first teeth - four at once! - at 16 months old. One of the typical developments in babies with Ds is a strange tooth eruption pattern, but your first four were split in the middle top and bottom of your gums. Luciya's first emerging teeth were named Pokey and Buddy, but yours seems a bit more aggressive, so they were named Jagger and Friends (one of whom was Keith, to be sure).

You've now got no less than 7 of Jagger's pals pushing their way in, and consequently we've had to stop nursing. July 1st was officially our last day (sigh), because, without going into too much unnecessary detail, you left some painful bloody gouges in a place where painful bloody gouges should be illegal. But we made it nearly 18 months, and now I'm officially free to get wasted every night. Just kidding.

You continue to be a sweet, snuggly, nuzzly beanie baby. You refuse to put on weight very rapidly, and you're still hovering at around 19 pounds. You sleep well through the night, waking around 6:30 a.m. and usually giving me a half hour of babble before our bright morning bottle. You still take organic formula, because milk still doesn't seem to agree with you.

We are starting Month Three of Nexium for your reflux, and while I won't say the spit-up phenomenon has been eliminated, it is dramatically reduced, which means we can very well get through a day with one or two bibs. Your feeding specialist is thrilled with your progress, as you've learned to chew with up-and-down AND circular jaw movements (another milestone on which I never would have thought to congratulate my "typical" child.) You have feeding therapy every other week and physical therapy every week. We are going to begin speech therapy, as well, as soon as we get back from next week's summer road trip vacation to California.

Sweet girl, I am looking forward to the day you become mobile and can force me to re-babyproof the house. Until then, you are a true heartstring-tugger and gentle-soft milky monkey. I adore you so much it sometimes makes me ache.

I love you, Mirabel!!

Love,
Mama

because they are very small

2011-05-25T22:12:00.002-06:00

When my fellow faculty and staff at Haleakala Waldorf School threw me a blissful surprise baby shower on Maui four years ago, one of my dear teacher friends gave me a copy of this prayer written by Rudolf Steiner. I spend a few moments with this prayer and my sleeping girls each night. It has been bouncing around in my heart lately, so I am compelled to share it.

PRAYER FOR VERY SMALL CHILDREN
spoken by an adult

May light stream into you that can take hold of you.
I follow its rays with the warmth of my love.
I think with my thinking's best thoughts of joy
On the stirrings of your heart.
May they strengthen you,
May they carry you,
May they cleanse you.
I want to gather my thoughts of joy
Before the steps of your life,
That they unite with your will for life,
So that it finds itself with strength,
In the world,
Evermore,
Through itself.

I Wish You Happy Days

2011-05-23T21:34:00.002-06:00

Ugh. It’s my child.

No parent wants to admit that his or her child is the rabble-rouser, the attention-demander, the sometimes-shouter, the crazy face.

But here goes.

Hi, my name is Emily and my child is intense.

I’m giving in, and admitting to the universe that Luciya Leona, light of my life, who turned four years old this month, is, often enough, a nutjob. She is deliberate and demanding and vivacious and loud. She stands up in the stroller and pushes to the front of the line and can fall unexpectedly into a wailing mess in under a second. She is sensitive and observant and way too quick on the uptake. She is touchy and just a bit too loving.

Wait, too loving? Is there something wrong with that? Yeah. It’s the whole “boundaries” thing.

A couple months ago, Luciya casually mentioned that a little girl in her preschool didn’t want to sit next to her in circle. My mommy hackles immediately went up. Come again? A child doesn’t want to sit next to my daughter? My bright, funny, sweet, engaging, daughter? Well. Let me just call the teacher about this one.

Turns out, the other child isn’t a snooty snob. She just doesn’t like to be hugged all day long. And my Luciya, as it happens, is the squeezer. You know the one. The one who is always trying to pick up the other kids, or lead them – a bit too strongly – down the lane. The one who scoots a little closer to the other child so their knees touch. The bubble-less child.

In a way, I’m happy about that fact that Luciya is comfortable enough in assuming the world loves her to want to be physically close to everyone. The child is certainly not shy, and she really has yet to meet anyone by whom she feels threatened. So that’s cool. But it also means we’ve been having to have the “keep your hands to yourself” talk. And it’s getting better.

Luciya responds excellently, and often immediately, to positive reinforcement (which – Hi, my name is Emily and my kid makes me want to pull my hair out – I need to get better at). She has a shining beacon in this ever-intriguing, ever-expanding world in her gorgeous preschool teacher, Miss Jen.

Miss Jen takes Luciya and eight other 3 and 4 year olds two mornings a week to a colorful room attached to her house that is called Happy Days. And I literally count my lucky twirling stars that my child gets this experience each week. Luciya emerges from the Happy Days gate each day at 11:30 with a spring in her step and pride on her face. Every day, she produces incredibly adorable, outright impressive works of art that my walls are becoming too scarce to display. Miss Jen is an artist, and her heart and time pour into providing these lucky children impeccable beauty in the materials she provides them, the projects they colorfully create, the quality of supplies they use, and the creative freedom they are encouraged to explore. Luciya is learning jubilantly, feeling proud, and letting her imagination fly.

When Luciya is overly … well, Luciya, Miss Jen positively redirects her, and always makes her feel safe. I feel 100% confident that my child is in a blessed and remarkable setting.

And I wish I could be a three-year-old again, too.

I wish I could be welcomed to a lovely and serene setting each morning with a hug and an “I love you,” only to be guided through some beautiful, happy songs and encouraged to touch and glitter and paint and glue and imagine to my heart’s content. I want to envision leprechauns that I’ll trap in my very own creation and learn my letters through physical movements.

I am so grateful for Happy Days because I know that my ambitious, confident, often reckless child is cradled in beautiful, loving security.

What else would any mother want for her child?

I’m Emily, and one thing I’ve done right as a parent is send my delightful first-born to a great preschool.

Thanks, Miss Jen. My little caterpillar has grown so well with you. Thank you so much for loving her, and for preparing her to soar.

She’ll be the butterfly with the glittery rainbow wings.

easy breezy

2011-04-25T22:00:00.003-06:00

What did you wish for, Luciya?

bella beana ballerina

2011-04-22T21:52:00.000-06:00

what i have become

2011-04-21T20:07:00.004-06:00

I am a friend to inspiring women. I am a wife to a kind, responsible, and adorable husband. I am a daughter to intelligent, loving parents and a sister to a brother who makes me smile. I am a business owner and proud of the opportunities I have every day. I am a reader, a dreamer, a lover of laughter.

But my real existence began four years ago. Now,

I sleep with one ear open.

I cringe at words like "hate."

I delight in knuckle dimples and stinky morning breath.

I am what I was meant to be. A mama.

An Ode to Knuckle Dimples

This minuscule chub
tugging, serene,
accentuated by the essence of Adorable;
dimpled pudgily and softly astonishing
your tiny infant hands

I linger in your dainty caresses
those dimpled knuckles trailing softly across my neck
fingers twirling my hair at the nape.
Your baby hand can disappear in mine still
I rediscover it time and again
and devour it with kisses.

Don't let those fingers stretch away
the wrinkly warm spots
that make me smile.
Don't grow too fast, my baby,
stay
and let me knead you for a while.

eLLe: 4 years old

2011-04-19T21:53:00.000-06:00

Dear Luciya,

You are four years old today.

You are a miracle.

That is all for now.

I love you, Luciya!

Love,
Mama

bella beana: 15 months

2011-04-15T15:30:00.007-06:00

Dear Mirabel,

The most remarkable thing happened this week.

You waved hello.

It’s your new party trick. In the last four days we’ve been showing off this awesome new feat to everyone. Wave to Mirabel! Mirabel, wave hello! Hi, Mirabel!! And it’s just a stiff, delayed upward hand jab. But I can see you processing the movement, and wanting to wave back, and concentrating so hard, and then your pudgy little digits flip up, for just a second, and I’m jubilant.

You are fifteen months old today, and besides your new salute, you’ve been making some physical leaps and bounds as of late. Nothing as remarkable as pulling up, or crawling, or even getting yourself into a seated position, but you seem wiser and stronger, and your pudge is slowly leaving those rosebud cheeks.

You still have a pretty insane reflux problem, and in addition to your weekly physical therapy we’re seeing a pediatric feeding specialist every other week. You had a swallow study at the hospital a couple months ago and when the feeding specialist got the results back she said you were the first case, in her 13 years of practice, of a child with the combination of issues that you have. Issues like swallowing too much air and a sphincter that doesn’t fully open and low muscle tone and gastric reflux, which, when added all up equal the Mirabel Special, which is equivalent to 6 bibs a day.

You are slowly learning to feed yourself, aka bring your hand to your mouth, and the Baby MumMums are the first thing you’ve been able to successfully chomp at solo. The super puffs, the bits of bread, the other easily-dissolved (because you can’t yet chew) items are just too tricky to understand. You’ll get a puff in your hand, get all freaked out and surprised, and flail the hand around like the puff is a magic dragon or something. The MumMums are longer, and very light, and a bit of an accomplishment.

You’ve gotten the clear to begin cows’ milk, but the few times I’ve introduced it to you have not produced pleasant results. Your spit-ups are extra stinky and super chunky, and just gross. You still wake up in the middle of the night around 3:30 a.m., and no matter how long we try to let you work it out and fall back asleep, you get worked up, and keep goingandgoingandgoingandgoing until one of us trudges upstairs to rock or feed you. I will be immensely grateful when this stage has passed. Since fifteen months feels like a really long stage. I’ve been told it is most likely due to your reflux, and I’m supposing it’s time to just buck up and start the prescription meds that your doctor prescribed a while ago, instead of hoping the probiotics we sprinkle in your bottles will suffice. Poor Bella Beana Ballerina.

You are so lovely. Your spirit is so kind and accepting. You are calm, and deep, and pleasant and good. Until we begin your therapies. You are not a fan of either therapy and you’ll flail and throw your head back during feeding work and whimper and pound your little face on the ground during physical therapy. I’ll admit there are times I wish your PT (who we do love) would take it a wee bit easier on you, but I understand that these steps are necessary for your ultimate strength. You still just sit and plop and roll and lay, and I am eagerly anticipating the day you learn to scooch around after me.

You continue to be a world-class snuggler. You are soft and love to be held against a shoulder after your nighttime bottle. You nuzzle in, breathe slowly, and twirl your fingers in my hair. You love nothing more than to be held, or rocked, or nursed, or cuddled or squeezed. You explode with darling laughter when I flutter my fingers over your belly and around your ribs. And you make it easy on all of us to comply with your snuggle wishes - your fat little thighs and wrinkly little toes and marshmallow buns are totally irresistible.

Welcome to your sixteenth month, my dear. I’m predicting we see a tooth or two in the next couple of weeks. I ‘m predicting some belly crawling in the next month. I’m predicting a welcoming wave with every day-making smile you shine out to the world.

I love you, Mirabel!

Love,

Mama

pace & patience

2011-02-28T09:39:00.008-07:00

Before we begin, let's find her. Oh, there she is.

Now then.

My daughter is 13 months old and I can still leave her on the middle of my big bed without fear of her wandering off of it. She is 13 months old and cannot sit up from prone position without assistance. She is "toddler"- age, but still hasn't figured out how to scoot her little knees up to crawl.

So when I got the call from her Infant/Toddler Program case worker last week to make an addendum-signing appointment (Oh, the paperwork!) in order to move Mirabel's every-other-week physical therapy appointments to a weekly basis, I wasn't too surprised. Grateful, actually. But then I saw the copy of Mirabel's Physical Therapy Evaluation, and it said, right there in black and white, that "Mirabel is functioning at the level of a 4-6 month old given the range of her skills both in fine and gross motor at this time."

Dang.

She's functioning at the level of a baby less than half her age.

And it's just... it's kind of... hitting me, only know, that I feel a little frustrated. A little lost. A little guilty (Is it because of me that she's not progressing at a better pace? Do I need to be doing much more?). I'm starting to realize, and maybe to accept, that despite the perfections that exists in this plump and gorgeous and glowing-smiler adorable ray of delight Mirabel, there is a row ahead. And hoeing it is going to take a long time.

It's going to take forever.

Now that Mirabel is 13 months old, it's not as easy for me to envision and excuse her as a little baby. Now people double-take when I tell them she's 13 months old. Now her little comrades are starting to dash around and tear up the house and use small words and drink out of sippy cups that they wield themselves.

Now that Mirabel is 13 months old, I'm wishing I could put her down and have her be able to explore a bit. To open the Tupperware cupboard. To wander after me through the house. I wish I could put up the baby gate at the top of the stairs again. I wish I could surround her with toys and know she could reach for one and actively stay engaged with it. That her tiny fingers could discover their ability to scoop up the puffed rice and bring it to her lips.

Now that Mirabel is 13 months old it's getting harder not to compare her - to her friends, to other children, to her sister at this age. A universe of difference. Luciya was dancing.

Wait a second, let me find her again. Oh, there she is.

And I am so grateful, and I am so blessed, that this wee serene nugget loves nothing more than to be held. To be squished, and petted, and nuzzled with kisses right up under her supple little neck. That my 13 month old little girl is the most blissed-out round-bellied creature when she is resting on my lap, head on my chest, blowing baby gibberish at me between her contented sighs. Letting me stroke her thin, fuzzy, fly-away hair. Pulling back to shoot me a toothless smile.

And I am so grateful, and so blessed, too, that Mirabel will walk one day. That she'll run. That she won't need to be confined to a wheel chair. That she will speak, and she will drink from a cup, and she'll dance. And she'll learn and she'll make friends and she'll paint a rainbow and she'll fly.

She is the strong one here. She doesn't complain. She has made peace with that plain that exists beyond frustrations and beyond doubt. All she asks is that I ensure some opportunities to let her grow.

And so I will. We will. She will.

"Never think that God's delays are God's denials. Hold on; hold fast; hold out. Patience is genius." - Comte de Buffon

the darndest things

2011-02-28T09:30:00.003-07:00

"Mama, can Mila eat boogers?"

"Mama, do oatmeal and Cinderella rhyme?"

"Mama, do butterflies poo?"
"Yes, they poo."
"Where do they poo? Do they poo in the toilet?"

"Mama, I don't care for geese."
"Why not?"
"Because I only care for ducks."

"Mama, what do "fell in love" mean?"
"It means when two people see each other, and it made their hearts happy, and they fall in love with each other. Like when Daddy fell in love with Mama."
"Mama... when Mirabel was born, I fell in love with her."

tic-tacky

2011-02-08T12:45:00.002-07:00

Luciya: "Dada, can I have a mint?"

Dada: "No."

Luciya: "Dada, can I pleease have a mint?"

Dada: "No."

Luciya: "Pleeease, Dada?"

Dada: "Luciya, you can ask me a thousand more times, and the answer will still be no."

{Luciya asks two more times.}

Dada: "Luciya, what did I say?"

Luciya: "You said I could ask a founsin times!"

sisterhood: a celebration

2011-01-25T21:02:00.010-07:00

"Mama," Luciya said the other day as we were driving to Stroller Strides, "Me and Mirabel are going to get married."

"Get married!" I said.

"Yes. Because we love each other so much."

And while I was thinking of a way to adequately express the total jubilation this brought me, she continued with the wedding plans.

"And if horses want to come, and if cows want to come, and if pigs want to come, they can. But the pigs can't come in."

"Oh? Why not?"

"Because they're dirty, silly!"

Ah. A clean wedding, then.

"But," she concluded after a moment's thought, "we will have a mud bath for the pigs, so the pigs can play in the mud bath. And you get to play in the mud bath, too, Mama!"

That's about the extent of the wedding plans go as far as I know, but you can all trust that you're invited to this farm animal-friendly affair.

Because it will be joyful.

Because, in addition to marking the first birthday of one very special little girl last week, January 15th marked the first anniversary of an incredible relationship that will never know the perils of divorce.

Sisterhood.

Luciya and Mirabel began on that day one year ago a journey of togetherness and illumination that will define who they are to themselves and to the world for the rest of their lives.

Sisters.

So we celebrated Mirabel's birthday that day, and we also celebrated the one-year anniversary of a fabulous relationship. Luciya got a new pair of shoes to commemorate.

The love between these two is palpable. When Little Mirabel hears her big sister's voice enter the room she cranes her head to find her, and extends her chubby little wrinkled hands to grasp for her sister's hair, or fingers, or cheek. And feisty, outrageous, spirited Luciya is a heavenly helper with her gentle baby sister, nuzzling up and smiling and showing her the ways of her world.

This is what it's all about, folks.

This is why I'm here.

This is Love. And I send my thanks out every single day that I get to witness it, that these two delightful miracles - these sisters - chose me to be their mama.

It's kind of ridiculous.

So, being the amazing filmmaker that I am, I made a video.

To my sweet, lovely daughters: May I be the first to wish you a Happy Anniversary.

Love,
Mama

sweet one

2011-01-15T21:57:00.000-07:00

Dear Mirabel Ruby,

This morning a low winter mist hung around much of the morning, shushing the bustle of the sunrise and softening the crackly brown outlines of the leafless trees. It is your first birthday, and I was grateful for the stillness outside, because my heart is having a bit of a time accepting the fact that it has been 12 months since our lives changed forever. But there they are, the naked trees and heavy gray clouds I gazed upon for two weeks from your space in the NICU. Outside is the breath-puffing chill, and the sidewalks look perpetually damp. It is January in Boise. It has been a year.

Has it been a year? Can it be? It seems so much more surreal since you are still my eternal baby, still equivalent to a six-month-old in that you sit and smile and roll and are fed pureed baby food, but you don't crawl or pull up or walk or feed yourself or have teeth. You gaze at me with those surprisingly cornflower blue, almond-shaped eyes and you're fine with everything. You're fine with the rolls upon delicious rolls along your thighs and arms, you're great with the bouncy seat and the physical therapy. You're content. You don't complain. Far from complaining, you radiate true goodness. You are a little goblin of goodness.

You smell of Weleda calendula baby lotion. It's the smell of my babies, and I'm so glad I stockpiled several bottles of it from the clearance bins at Fred Meyer. You smell soft, and warm, and natural and pure. The other night you uncharacteristically started screaming from your crib a couple hours after I had put you down. That uncanny mother's instinct kicked in and, although there was no telltale way to know, I said "Her cheeks hurt." I gently smoothed some of the Weleda lotion on your rosy-dry cheeks, and you were breathing softly into my neck moments later.

You still wake up once in the middle of the night, between 3 and 4 a.m., and I pad up to your room and feel the soft weight of your sweetness and the warm cotton of your footy jammies as we nurse in the glider, both of us mostly asleep. Some of my very favorite moments with you are just after you awake in the morning around 6:30 a.m., dawn still a tease out the big picture windows, and I clutch you to me and bring you back into our bed, where we snuggle, nurse, and doze for close to an hour. You often break away to babble - "buh-buh-buh {inhale} BAH-buh-buh-buh-buh" - and then snorkle right back into me for seconds and thirds and fourths. Luciya wakes up around 7:15 and usually comes into the room to join us, and the four of us enjoy happy family snuggles for a while. It is the sweetest way to start the day. I beam when I see my two morning-eyed beauties cuddling up together.

While everything about you is ingrained in my being right now, I know this too shall pass and I may forget, so here is what you are right now, physically: You still have a smooth nursing callus on your top lip. Your lips are shaped exactly like Luciya's. You hands are butter-soft, and have the yummy rubber-band roll at the wrist. I need to trim your fingernails often, because you are a lip- and nose- and chin- and waddle-grabber, and your father and I have each recently born bloody proof of your scratches on our noses. Your cheeks have become rosy from the dry cold. Your nose is constantly crusty from some sniffles that won't go away. Your thin hair is light brown and rapidly growing into a fine mullet. Piggy tails are possible and a near-daily style. You show no signs of sprouting teeth yet. This worries your great grandmother to no end. Your belly is round and soft. You pull your toes into your mouth for a snack. You eyelashes are long. Your eyes are deep, swirling, changing from blue to dark green, like a stormy sea. You have an enormous fontanel that gives us telltale warnings if you're nearing dehydration, like you were last week after your first bout with pukey, diarrhea-filled stomach flu.

You weren't quite your self this evening when we had family over for a simple birthday dinner; there was residual yuckyness hanging around and you were fussier than normal. But we toasted you and sang - twice - and you were passed around in your little brown dress and polka dot tights and you patiently observed your sister tearing open your presents. You had your first taste of whipped cream and delighted in it. We celebrated you.

Tonight, as I was gliding with you before slumber, I reached down to stroke your head and check your fontanel. And you pulled back and smiled at me, a simple, hearty, happy smile. A smile to smile, a smile because I stroked your head and it just felt nice. And so I stroked your head again and again, drifting my fingers through your fine hair, laying my palm upon your wide forehead. And that happily contented smile kept sliding across your face. And I suddenly wanted to devour you. I nuzzled your cheeks and planted kisses all over your sweet head and inhaled and inhaled and inhaled you until my senses were filled.

And I celebrate you today and every day for the past twelve months:

Happy birthday, Mirabel. I look forward to celebrating you for many many years, in many many ways.

Thank you for choosing us.

I love you, Mirabel!

Love,
Mama

milestones

2010-12-16T21:05:00.003-07:00

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

2010-12-15T21:57:00.006-07:00

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?

2010-12-07T12:02:00.004-07:00

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

2010-12-06T20:34:00.006-07:00

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

2010-11-26T21:51:00.001-07:00

eLLe - 43 months

2010-11-19T20:20:00.012-07:00

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!

2010-11-13T22:36:00.001-07:00

Bucky

2010-10-30T14:06:00.000-06:00

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

2010-10-04T21:29:00.000-06:00

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

2010-09-26T20:08:00.004-06:00

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

2010-08-29T14:43:00.001-06:00

bel: 6 months

2010-08-08T21:33:00.008-06:00

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

2010-08-08T20:24:00.000-06:00

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.

star shirt!

2010-08-03T23:24:00.002-06:00

Luciya, August 2007

Mirabel, August 2010

eLLe - 3 years old

2010-07-19T13:00:00.001-06:00

Dear Luciya,

Today you are three years and three months old.

In honor of the magic that this trinity of years is brining upon us, let's look at all the ways you're celebrating in triplicate.

Three is the number of parties we had to celebrate your big day. The first was at your preschool, which we're taking a break from for the summer. You brought chocolcate cupcakes (which were RAD, I must say -- the gluten free cake mix was the way to go), wore a purple paper crown, and got to walk around the sun three times. The second party was the quadruple-threat toddler birthday bash, which turned our backyard into a squriming, bouncing, tractor-riding swarm of little bodies, and which was a blast. The thrid party, on the day before your real birthday, was a family dinner in which you received art supplies, clothes, and a purple sleeping bag that's just your size. Needless to say, when you awoke on your actual birthday and I announced the fact you said, "No, it not my birfday, It already happened."

Three is the number of hair lengths you've had since your birthday: Down past your shoulder blades; chopped - for the first time ever - to shoulder-length; and, most recently, bobbed to... a bob. It's a perfectly adorable summertime cut on you. I love it, and so do you.

Three is the number of states of being you have about you:
1) The loving, warm, sweet and helpful, intelligent, huggy day-maker who says and does the cutest things;
2) The incorrigible, irascible, fiery stinkpot pill monster who makes me want to pull my teeth out; and
3) Asleep.

You've grasped the concept of favorites, and if asked your three favorite things are:
1) Animal - Monkey
2) Color - Purple
3) Person - Little Mirabel

Your three favorite questions are Why, Why, and Why. "Why, mama? Why do it do that? Why is it like that?" It can go on forever... and ever... and if I try to turn it around and say, "What do you think?" You'll say "What do I think, Mama?" Stinker.

Three is the average number of outfits you'll go through in a day, especially since when (or IF) you take a nap, you insist on wearing jammies. And when you wake up from said nap, you've selected a new outfit to wear. Your creations are really pretty fabulous, and if they're not necessarily cute, they're very Luciya.

Your three favorite things to do are paint in your art table, jump on your mini trampoline, and roar. I don't know where the "Raaawwwr" came from, but we've had to have some serious talks about appropriate roaring time and place, so now you'll look up sincerely and ask us if you may please go outside and roar (since it's only an outside activity). And we'll say yes, and you'll go outside, and raawwwrr, and then come back in.

Three is how many feet tall you are (plus 2 inches), and you weigh 37 pounds. Your pediatrician warned me about your bmi being too high, but I'm taking that with a grain of salt. You eat very healthily, and rarely have juice or sweets. You are active and happy. You're just... solid. (But, I am more concious of the number of snackies we have in between meals).

Three is the average number of times a day I laugh at or am charmed by the things you say. Some recent favorites:

"When Tutu was born at the hospital you feed Tutu and she started to grow."

"I'm trying to get my hair patches off. I have hair patches like Daddy."

L: "When I was a little girl I live in Heek with my daddy." Mama: "Where's Heek?" L: "You take a left and you take a right and you find Heek!"

"Tuna on the tata! Tuna on the tata!" (After watching a few minutes of Lion King for the first time).

{When viewing the whitewater tumbling down the Payette River}: "It looks like lotion."

And three is the number of bounds it took me to get up the stairs and into your room when you cried painfully out in your sleep a few weeks ago. I laid down beside you, curved you into my arms, and said "Mama's here."

You know it.

I love you, Luciya!

Love,
Mama

Proud Parents

2010-07-16T14:01:00.000-06:00

I created these shirts for John and me a couple weeks ago.

I got so much positive feedback, I decided to run with an idea and open a little online shop.

Introducing Ds Baby Shop: "Fun and unique clothing for children with Down syndrome and the families who love them!"

Here are some of the designs I have added so far. Suggestions and comments are welcome! Thanks for taking a look, and helping to spread the word!

I also created a couple designs that are featured on several items:

You can visit the shop here.

You can also become a fan on Facebook.

Many thanks to Mirabel, our beautiful muse, who turned six months old yesterday! We love you, Mirabel!

Mirabel Makes a New Friend

2010-07-10T21:47:00.000-06:00

Love the progression.

How to Survive

2010-07-09T11:22:00.000-06:00

A good friend welcomed a beautiful, healthy baby boy a few days ago, and I didn't go to visit them at the hospital. At first, I thought it was simply because I couldn't go when John suddenly had to go in to work, but then I realized I felt relieved. I am beyond overjoyed for my friend and her family. This little baby is a miracle for them and I cannot wait to meet him. But my heart was suddenly heavy. Same hospital, same delivering midwife... but not the same outcome. She is there with her baby. In her arms. And with friends coming to see her and wish her well. She is going home with him, and they are content.

And I realized that my experience, in the same hospital, with the same midwife, was too different for me to walk in the doors again without tinges of sadness. I was alone, with no baby next to me, processing the shock of a diagnosis in fight-mode. I still think I'm in that mode - brave face, strong heart, positive outlook. I am not jealous of a healthy baby or wistful that my baby has Down syndrome and hers doesn't. Mirabel is a joyful-jolly-jubilant addition to my life and I am head over heels about her. But I do think there are some unprocessed emotions that got shoved in the nether regions of my gut the very second I heard the words "Down syndrome."

Survive. Make it through. Go. We can do this. Look at her! She's amaaaazing.

So. That day I started feeling a little blue and I couldn't shake it. I didn't join my friends when they went to meet the new little guy. Instead, the girls and I got out of the house and went down to the restaurant where their daddy was bartending. Once we got there, Luciya had to go to the bathroom, so I left Mirabel in her car seat at the table and took Luciya into the stall.

"You go first, mama - "
"Okay, " I said,
" - so I can dance."

And Luciya danced in the stall while I went pee, with her quirky little twirls and wrist rolls, her squats and flounces. When it was her turn to use the toilet she instructed me, "Now you dance, Mama." And so I did. And then we washed our hands, still bopping, and Luciya said, "Mama, dance back to the table, that will be fun." And I did.

The two of us shimmied and bobbed back to the table, sideways diner glances be damned, and when we returned to the table I felt so much lighter. And it didn't escape me that the song that was playing through the restaurant speakers was "Crazy" by Seal (which is, in my opinion, one of the best songs ever in the history of everything). The chorus of the song goes

"We're never gonna survive unless we get a little crazy."

Dance. Shimmy. Enjoy.

Here goes. I feel better already.

We all do.

{And many, many, sweet congratulations to Christina and family. We love you.}

i guess you'll say what can make me feel this way

2010-06-13T21:42:00.001-06:00

hellooooo....

2010-05-29T21:46:00.005-06:00

Earth to Mama!

{Luciya had to bring an extra banana for her friend Maryn}

Sheesh.

Luciya is awesome, Mirabel is awesome, life is awesome, I'm in awe of life. Yay!

Here are some pics I took with my phone recently!
{And the blogging award goes to......}

{Actually, Luciya took this one.}

{Ah, a sunny day in Dolores Park, San Francisco.}

{Babaybabybabybabybaby.}

{She tolerates me.}

Updates

2010-05-29T21:26:00.000-06:00

Oh, my gosh, it's been over a month. What to say? Simply that Mirabel is a marvelous, miraculous, mushy-gushy baby girl. She sleeps 11 hours through the night, beams with full-face smiles throughout the day, and spends the rest of her time eating, pooping, cuddling, playing with her big sister, and practicing her physical therapy. She is getting so strong and can roll in both directions. Her head and neck are getting stronger every day. She is peaceful, jubilant, and perfect. That's all I have to say. I'll let her say the rest.

I love you, Mirabel!

Love,
Mama

attitude is everything

2010-05-19T21:39:00.004-06:00

"I am still determined to be cheerful and happy, in whatever situation I may be; for I have also learned from experience that the greater part of our happiness or misery depends upon our dispositions, and not upon our circumstances." ~ Martha Washington

This goes out to my grandma Leona, who turns 83 years old tomorrow. Grandma fell in her assisted living bathroom the other day, and lay there for 3 1/2 hours until a maid found her. Nothing is broken. ... Quite unlike the time about 3 years ago when she tumbled from a stool in he kitchen, broke her knee, managed to crawl to her bedroom, and spent the night on the floor until my uncle broke in her door the next morning. ... Or the time about 13 years ago when her car flipped at high speed and crushed much of her sweet little body.

It is by the grace of God and by the adherence to an adage cross-stitched in a frame above her dresser that lovely Leona is serenely with us today. That quote says: "Attitude is Everything."

Someday, I will write an homage to my lovely "Grandma Sweetie," entitled "All I need to Know About Life I Learned from my Grandmother." She has faced true obstacles her entire life, and never, ever fails to dust herself off (sometimes literally) and count the blessings that remain. Every single time.

Grandma is a frail 83, and is now reliant on a walker. We are so happy she is in a home that is close to us. Since she won't pull assistance cords or dial 911 because she "doesn't want to disturb anyone," it's reassuring to know that the odds of finding a large bloody gash in her head, like we did a couple years ago, are relatively slim. She perseveres, shrugs it off, looks on the bright side, puts a shiny red foil heart sticker on your greeting cards, gets excited about Bingo and arts & crafts, wakes up every morning at 5 on the dot, and hugs you with a bone-crushing strength you wouldn't think possible from such a squat, tiny woman.

You are so very loved, Leona. Happy, happy birthday to you.

Twelve Pounds of Heaven Butter

2010-04-30T14:17:00.000-06:00

.

I planted a pearlized peck on your plump cheek that now glows glossy
in the same shaded afternoon light that
elongates your wispy lashes with shadows

we sifted powdered sugar onto gluten-free cake
you faced outward to make your neck strong
I am headstrong
and I know it

I would spend time wondering
what your growing pains might feel like
but for now
I can't get enough of your knuckle dimples

you are
12 pounds of Heaven butter
a scrumptious schmear
on the dense crumbly muffin that is my trudge

you are
breathy boisterous powder-scented
nuzzly sugar-coated softweight
flung into my arms and onto my breast
growing first within me now
cradled all around me

you are come true
spit shined and diamond crusted dreams
I didn't know I dreamt
but I never remember my dreams
so I'm content

you are my shine

and I thank you, thank you, thank you
for letting me be to you
who the ground is to me
when its sturdy stumbly paths through green light
make me look up and say
wow

or, holy cow

I can promise to offer you that same earth
for your crinkle-toed feet to peruse with great glorious confidence
I can promise
to watch these new skies of all colors
with you

you are my bright

I smelled you a scent of wonderment
a spice of soul-glide
you chose me and I hold you
and you are safe here in this light
and in all the other hues that filter through your
baby blue curtains

I am your silky tube.

4.29.2010

Love,
Mama

My Mirabel: 3 Months Old

2010-04-29T22:24:00.000-06:00

.
Dearest Mirabel,

Can you really be three and a half months old?

Get out of town, you cheeky cheek-faced cheek monster! She With the Cheeks That Are Cheeky. Mmm, I'm suddenly craving a nibble.

{Excuse me.}

Oh, that's much better. Deeeeee-lish.

You scrumptious little ball of downy cheekiness, you leapt into my funny bone the other day when you laughed for the first time. It was just a syllable, just a hoarse, single chortle. A chort: "Henh." You were busy smiling away as I jiggled you and sampled the daily flavor of your cheeks (as I recall, it was pistachio), and I think the noise surprised and delighted us both equally. Your eyes got wide, like, what the heck just happened?, and I only succeeded in confusing your further with my own responsive bray.

This emotional display milestone rocks my world. You are a wonderful, happy, peaceful, dreamy, well-fed, well-loved, well-flavored bundle ball just brimming with bliss, and the fact that your smiles come more readily now somehow solidifies your space in my heart as a real person, a grinning infant, my daughter.

Other milestones can wait [Do you hear that, Self?! No rush!] - like, for example, holding up your head. So your head is still a little wobbly, despite hours of tummy time. So what? Why on Earth am I going to push you to be a head-holder-upper right now, when you are the World's Greatest Nuzzler, and your wee furry noggin nestles itself right under my chin when I pick you up? That? That right there? Bliss.

We tried visiting the Ds infant/toddler playgroup again this week, and again I just didn't feel comfortable, or ready. It's so hard to put a finger on the way I feel when we're there. The mamas are all very nice, and I think it's great that the playgroup exists, but it just isn't giving me the kind of encouragement I think I need right now. I realize there is a long and interesting path ahead of us, and that many bumps will come up along the way. But you're three months old, and I just don't want to think about how your teeth will come in, and when I should start signing with you, and how long it will take to get you potty trained. For now, for these sweet and fleeting months, you're a baby. Just a baby, just a little sister, just a diaper-wetting, over-rolling, toy-grasping, foot-flailing, chubby-armed, soft-skinned, up-spitting, long-napping, nighttime-swaddled, daddy-cuddled, stormy-blue-eyed baby, who is learning to suck from a bottle and by Jove will get it down pat, because I'm leaving town next week for two nights, and - no offense - I hope to be going solo.

I love you, Mirabel!

Love,
Mama

magic

2010-04-23T11:14:00.004-06:00

Three is a magic number
Yes, it is, it's a magic number
Somewhere in the ancient, mystic trinity
You get three as a magic number.

The past and the present and the future.
Faith and Hope and Charity,
The heart and the brain and the body,
Give you three as a magic number.

- from Schoolhouse Rock; "Three is a Magic Number"

What a month for magic. Mirabel is 3 months old and Luciya just turned three years old. Posts to come of my lovely, sweet, strong, and miraculous little girls.

P.S. If you want to be able to comment on this blog, send me an email. More psycho-stalking mischief is about. XO

Cheeeeeeeeeeeks!

2010-04-14T12:29:00.000-06:00

Sisters

2010-04-13T21:00:00.000-06:00

I never in a million years thought I would have two girls.

I never in a trillion years thought one of them would have Down syndrome.

But here we are.

And my heart overflows.

Luciya will be three years old in a few days. She is vivacious, exuberant, feisty, and daring. She is beautiful and sensitive and totally hilarious. And she adores her baby sister.

She calls her "Little Mirabel" and loves on her every chance she gets. Luciya is helpful and kind and gentle and observant. She fetches me diapers and sings "Twinkle, Twinkle" when Mirabel fusses. She has absolutely blossomed in the past three months.

These two squishy, lovely, stinky little butternuts are my truest delight. I am humbled by their beautiful light and so very proud to be their mama.

Honesty

2010-04-07T22:11:00.000-06:00

I lied.

I'm not reading Gifts or Roadmap to Holland. I've skimmed one and started the other, and they're in a stack on my nightstand along with Babies with Down Syndrome and Expecting Adam and Your Baby's First Year Week by Week. But I'm not reading any of those, either.

I'm reading David Sedaris.

I've even read this one before, and I had also read the 1,000-page novel about a Victorian-era prostitute that I just finished before, but when I'm in my snuggly bed before sleep overwhelms me, with Mirabel softly snoring and gently sighing in her bassinet, I want the words I'm reading to lift me away, to make me laugh... to let me escape.

Wait, is that right? Is that what I'm trying to do -- escape? Nah. Well, maybe. But I'm not saying Oh my life is so horrible, just let me escape! Heavens, no! I actually think my life is uniquely wonderful right now, full of opportunities and hope and baby's breath. Mmm, my baby has baby's breath and it is so yummy. She's a baby. I am relishing her baby-ness and smelling her baby skin and taking huge bites out of her fat baby thighs.

The other books are there, in a stack, waiting patiently, saying, "We're here if you need us. Mirabel has been welcomed in to a world where you will read and receive all the support and encouragement she needs. Crack us open if you need a dose of hope and reassurance. We're here. We'll wait."

Thank you, books.

And while we're on the subject of honesty, let me throw out some props to my strong, stoic, supportive husband and baby-daddy, John. John loves to talk things out. I'm serious! He's all, Let's get to the root of this, let's talk it out. He listens, and he apologizes (if he needs to). Lord help me, sometimes I think this man is too good. So when Mirabel came around I looked to him for the raw honesty I would need. And I saw him struggle on that first day, and I saw him come as close to tears as I ever have in 8 years. "I just want to be a good father for her," he said. And then he spoke some of the most beautifully honest words ever:

"I think Mirabel is here to teach us to slow down."

True that. Not that we have been able to slow down as much as we'd like, but Mirabel doesn't seem to mind. She's patient, too. {Case in point: We were all in the car the other day and I turned to Luciya to ask how Mirabel was in the back seat. Luciya's reply? "She's just chillin'."}

But Honest John did come to me, worry in his brow, and thoughts in his brain. Because whether we immerse ourselves in the literature or not, Mirabel's diagnosis is perched in every nook and cranny of our lives. And Honest John apologized before he spoke, but he did share The Thought: "You never want your children to die before you do... but part of me hopes that Mirabel does live a long life but does go before us, so that we don't have to worry about her."

And there you have it: shocking, simple, heartbreaking, and ultimately difficult to even express out loud. And we went and marveled at our baby in all her baby glory, and decided to slow down and enjoy every minute we do have.

And then I showered Mirabel with all the blessings I could muster, and I fluffed my pillows and settled in and read some silly stories about the silly South Carolina childhoods of David and his siblings, and I went to sleep.

birdsong

2010-04-07T21:41:00.003-06:00

Mmmmmm... yummy. I know Spring is ready to burst into full bloom when I wake up to birdsong for the first time. Is there a more delightful, delicious sound after the bleak, heavy shushing of Winter? Yes, I do love the arrival of birdsong, the first sighting of Mr. Robin Redbreast, the powdery floral scent of emerging apple blossoms, the brave tiny buds daring to poke their little peepers out of the earth.

Luciya plucked one of these little flower heads the other day and brought it to me.

It was so tiny, and the act was so endearing, and you know me, all sentimental about everything, and needing to record every First... Well, this was the first time my little girl has picked a flower for me.

I used to do that for my mom all the time. And she was always very gracious about receiving my little gifts, which were usually frayed yellow dandelions from the front yard, and which I'd hold behind my back until I was ready to present them with a flourish and a shy, proud smile.

Don't think I didn't keep that teeny yellow blossom.

And then... then. Then I remembered it's April in Idaho, and a few days later we woke up to this.

How do you feel about that, Luciya?

And what about you, Little Mirabel?

Oh, poor little Red Eye. Are you so sick of me having to scrape away the crusty tear duct goop every day? Some mornings your poor eyes are so smeared over, you can't open them! This will clear up, along with your thrush, by the time you're 15. I just know it.

And Spring will hold fast, if even for a brief, petally exhale into Summer. And we'll enjoy those sweet opportunities to get out of the house again, and I'll glance up out the window and see my lovely little family surveying the land.

Welcome back, Spring. Take your shoes off. Hang around a little while. Keep on singing.

well.

2010-04-06T21:08:00.001-06:00

colorful chicks

2010-04-05T10:05:00.005-06:00

Ah, the bright and happy colors of Spring.

Especially when they're accompanied by tutus and pigtatils.

Luciya and her good buddies Grace, Eliza, and Maryn will be celebrating their birthdays (which range from February to July), with a Toddler Birthday BBQ Bash, and we got them together for some invitation photos.

Cuteness overload.

My Mirabel: 2 Months Old

2010-04-05T09:11:00.000-06:00

Dearest Mirabel,

I am crazy about you.

You *finally* started smiling socially last weekend - on my birthday! - and the transition from newborn to infant is slowly taking place and it makes me happy. You're becoming less of a delicate blob and more of a sweet-smelling babe who just wants to nuzzle.

You are a top-rate cuddler, and it allows me to just marvel at you, with your buttercup cheeks and edible elbows and downy hair. I cannot look at you without seeing A Baby with Down Syndrome, though, and I often find myself asking you why. Why do you have Down syndrome? Why did you choose me? What is this going to mean for all of us?

When I was pregnant with you, I was so positive you were a boy. (Hence, the blue-and-brown motif in your bedroom). I was so sure of it; I could just feel it, and that should have been my first indication that you were a girl, since I was so sure you sister was a boy, as well. During my 22-hour labor with you, I sighed and rolled my eyes in mock exasperation a few times, saying This little guy is going to keep us on our toes!, after your sudden flip to breech position, your varying heart rates, and the fact that you just couldn't seem to find the way out.

But here you are, and you're Mirabel. You were Mirabel all along. You were Mirabel when I got stuck in that awful traffic jam last August. You were Mirabel when I had an emotional breakdown in September. You were Mirabel inside of me, my winter miracle, rolling around and filling me with wonder. You are Mirabel, my fighter, my champion, my cuddle bug, my smiler. My daughter.

It was you all along, and I am honored to be the one who carried you. Thank you for choosing me to be your mommy. I promise to love and live alongside you forever.

I love you, Mirabel!

Love,
Mama

stomp

2010-03-25T15:36:00.002-06:00

The Girls.
Spring 2010

Physical Therapy

2010-03-24T22:15:00.000-06:00

Though the two weeks Mirabel spent in the NICU were so trying and exhausting, one blessing that came from the whole experience was the outpouring of support and resources we received from the social workers on staff (thanks, Roni!). We were led in the right direction down the overwhelming paths of Social Security, Medicaid, Katie Beckett, home care, the Infant Toddler program, etc., etc., etc..... Mirabel's diagnosis of Down syndrome automatically qualifies her for many services, which I am so grateful for, and which I am going to fully take advantage of.

Today was Mirabel's first appointment with a physical therapist from the Health and Welfare department's Infant Toddler program. Katie was very sweet, smart, and supportive, and we began what will be a federally-funded experience for the first three years of Mirabel's life.

Mirabel is only 9 weeks old, so there is not much to be working on just yet. But, we did discuss the importance of tummy time (which she doesn't seem to mind too much - as long as it doesn't go on too long. She rolled over twice the other day, but I think it's just because she was peeved to be on her tummy for so long!) Katie seemed impressed with the strength that Mirabel does have, and encouraged me with her exclamations at how well Mirabel squirms when she's awake and alert. Squirming! Who knew that would be such a cause for celebration?

Katie taught me some simple exercises, mainly a way to guide Mirabel onto her tummy to get her used to rolling over.

Next week we're meeting with a Developmental Therapist from the same program. Go, Mirabel, go!

.

March for Babies

2010-03-24T21:39:00.004-06:00

When Mirabel was in the NICU, I had the opportunity to meet some wonderful staff from our local March of Dimes. They were so supportive and postitive. Now, our Stroller Strides group is joining forces with the March of Dimes for their March for Babies in April. We're going to be leading a warm-up before the March and hosting a stroller decorating booth! The March of Dimes really is such a great organization with a great goal: healthy pregnancies and healthy babies! Will you donate to the cause?

Click here to help me reach my goal!

The "R" Word

2010-03-21T20:28:00.000-06:00

I saw this comment on a thread from one of my fan pages on Facebook.

Anyone else want to send Jason a little note? Ask him what part of the quote is "funny?" Ask him if there is anything else he finds "horrifically offensive" that he's just willing to toss out into cyberworld because chances are it will still get a laugh? No, because that would only be proving the essence of his point (which could have been said in much more intelligent, creative, and useful words.) So let Jason go. And I'll remain a fan of Regretsy. For now.

I've never liked the negative use of the word "retard" or "retarded," even when I was very young. So to see it flung around so carelessly, abundantly, and ignorantly makes me feel painfully indignant, especially since the birth of sweet Mirabel just nine weeks ago.

So, what can I do? What can we do? We can make a pledge. We can teach our children, and let them teach their peers. (Watch as 7th grader Kevin makes a speech in front of his whole middle school. Seventh grade! Is there a more difficult, awkward time in childhood? This kid rocks!) We can just be aware. Don't refer to something ridiculous, tedious, or boring as retarded. Even though "mental retardation" has been replaced with the more-PC "intellectually challenged," the slang still springs from the diagnostic term.

I don't want to become one of those suddenly-sensitive and/or self-righteous types who becomes an outspoken naysayer just because I have been personally affected by something. So I won't rant or rave. Like I said, I've never used the "r-word" negatively or condoned its use. I am just now so keenly aware that it's harmful, and hateful, and so dang prevalent.

This post, by a father of a toddler with Ds, is raw and uncomfortable at times. But he says better than I ever could just why we need to "spread the word to end the word."

And it's always nice when a celebrity has something to say.

Happy National Down Syndrome Day! With my thanks to Mirabel for opening my eyes when you opened yours.

eLLe - 35 months

2010-03-19T23:50:00.004-06:00

Dear Luciya,

You are going to be three years old next month, and I figure that since I have totally slacked on ANY eLLe posts this year, you're due for some shout-outs.

Ha! Shout-outs. Like how I did that? Of course, you do it much better. Ol' Screamy McYelper the Demanding Foot Stomper. Ol' I-Can-Do-It-All-By-Myself. Ol' I-Need-A-Hug-I-Need-A-Kiss-I-Need-One-Sip-Of-Water-Before-I-Sing-Myself-To-Sleep.

Ol' I-Want-To-Give-My-Baby-Sisser-Hugs-And-Tisses. Because that is the big stuff, the huge love that's filling this home to the rafters lately (do we have rafters? No, I guess not). You are a REMARKABLE big sister, just let me get that out of the way right off the bat. You're delightful with "Little Mirabel" as you call her. You're helpful and sweet and gentle and soft. You're not quiet, necessarily, but I think that just comes with the territory: your voice is decibly on par with the neighbor's rototiller that we're using to turn up the garden we hope to nourish this summer.

But I digress. Sisters. You literally inform just about every stranger we meet: "I have a baby sisser. My baby sisser name Little Mirabel. Ina big sisser." You are so proud. And I am so proud of you. You are a big, shining, warm, wonderful little person, and after the worst month your father and I have ever had with you (ahem, February, ugh), you finally seem to be settling more comfortably into your big sisser body (all 36 pounds of it!), and my nerves aren't constantly threatening to go on strike 'cause this baloney ain't even worth it any more.

Hoo, February was tough, child. I'll lay it out there: you were a monster. A terror, threat level code orange, an embarrassment, a ticking time bomb. Screaming, flailing, disobeying, being naughty, pushing at school. The pusher at school! My child. My lovely, confident, plucky little Maui-born nature babe -- the pusher. I can't tell you how hard that was on me.

And then, your dada and I started going to therapy. And then, warm sun came out. And then, you were better. And Miss Lynn started giving consistent "good day" reports. And there you were, my sensitive little soul: you were back.

Thank God.

Because when things are not well with you my heart is sodden. Because I love you fiercely. Your happiness is truly my penultimate goal, and if your sensitivity to the qualms around you means that I have to rediscover my own peace, then consider it found. I send you all my thoughts of calm, and strength, and that unbridled giggling happiness that makes the world a better place. May you be the embodiment of Joy for as long as I can help it.

I realized I totally miss posting any January haikus a couple months ago. You'll have to forgive me; I was kind of in the NICU when your 33rd month came along. But that's not to say the haikus weren't writing themselves in my brain. Ahem:

You laugh in your sleep
Late-night guttural chuckles
What is so funny?

Mirabel is here
Wond'ring why you can't see her
You're a big sister!

Sweet sick little girl
"My voice went bye-bye" you say
"But then it came back."

Say "All by myself,"
And, by Jove, that's how it's done
Miss Independent

Did I say Independent? I'm beginning to think that's an understatement. In the past week you have washed your own hair with shampoo, clipped your own toenails, and applied a Band-aid to your scraped knee. And you did these things very well - like, better than I would imagine a not-quite-three-year-old would do. You smoothly got the gauzy pad of the Band-aid on the owie. You maneuvered the nail clippers and trimmed your big toenails just right. Sounds awesome, but I'm not really bragging. I sometimes wish I could still pick out and put on your clothes for you. I sometimes wish you still needed help getting in and out of the bathtub.

My darling Luciya, it is such a pleasure to watch you grow and love to live. It is so fun to have full-on conversations with you and to try and remember all the touching and hilarious things you say (Lately, we've noticed you can't say the "sp-" sound at the beginning of words, so "spoon" is "foon" and you announce that you're "phecial an' important" - thanks to a statement in one of your favorite books, It's Okay to be Different.)

You are such a special and important little person, such a wonderful way to start a little girl, and on such a delightful path of promise.

I love you, Luciya!

Love,
Mama

Positivity

2010-03-13T20:52:00.000-07:00

Naturally, I'm up to my ears in books and articles about Down syndrome, and I've also discovered a delightful cornucopia of resources and blogs online. The way the information is presented is all across the board, and since Mirabel was born I just haven't been able to be terribly traumatized by the diagnosis, so I'm tending toward the more positive vibes out there. One of the first books we bought at the bookstore is called Babies With Down Syndrome. I tried to wrap my brain around the science of the first chapter, which was full of explanations and the words chromosomes, cells, genes, and the like. Um, yeah, I tried to understand that part. But as we all know my brain tends to start fluffing when it tries to comprehend anything on the math or science side of the spectrum. (I saw this great tee shirt on Mental Floss recently: "I'm an English major (You do the math).")

The second chapter of that book was full of words like anger, regret, denial, and rejection. I put the book down mid-chapter and haven't picked it up since. I know there is some good stuff in later pages, but for now I'm reading one called Gifts, which is a beautiful montage of stories written by parents about how children with Down syndrome enhance their lives. Then Libby, the woman behind Blessings and Glory, sent me - for free - another wonderful tome called Roadmap to Holland, which is a mother's first-hand account of raising her son. Both of these books are touching in their simple truth: having a child with Down syndrome can actually be a pretty amazing thing.

I thought this article on Baby Center was a wonderful overall description of DS, and I particularly liked the positive vibe and descriptions throughout: "beautiful almond shaped eyes," and "exceptional social intelligence."

And then, there's this. Yesssss. There's this.

Happy 8-week birthday, Mirabel! I am so excited for our journey together.

.

poor mila

2010-03-12T23:15:00.003-07:00

Oh, and I suppose you had more fun on your Thursday afternoon?

Meet Mirabel

2010-03-10T15:40:00.000-07:00

Mirabel loves to nuzzle. She loves to ride around in the sling or the Bjorn so she can nap nice and snuggly.

Mirabel rarely cries. She is gentle and wise. When she wants a cuddle, she bleats once. "Ehh!"

Mirabel sleeps a lot. She loves to be swaddled. She has fat little soft hands.

Mirabel has some serious cheeks. These cheeks don't mess around. These cheeks have been known to rest on her shoulders, and I'm not even kidding.

When Mirabel is awake, she is often quietly alert. Her eyes are deep stormy blue, with bright rings around the iris. They are always darting around, and when she pauses and looks into you it takes your breath away. She sees something deep. She sees your light and knows you are good.

Mirabel has a delicious belly button. Nom, nom, nom.

Mirabel says, "What's up, World? I'm so happy to be here!"

here you go...

2010-03-10T10:59:00.002-07:00

... In case you wanted to cut me open and see what my heart looks like.

...

Community, or, Nice to 'Meat' You

2010-03-07T22:06:00.000-07:00

Mirabel and I went to a lovely baby shower yesterday. She wore a dress that Luciya wore to a baby shower when she was a month old and looked just precious. She was sweet, and everyone wanted to look at her. But I came home feeling a little blue. I couldn't help but feel that people wanted to see her because they know she has Down syndrome. I really can't blame them; I would want to see the baby too, and certainly not in a malicious way. But she's different. And though everyone gushed "She's beautiful" (and she is), she's not beautiful in the quintessential way. Her skin is blotchy and her hair sticks up and she's got the defining characteristics and I know this. There were three other little babies there, all boys. I have a number of pregnant friends right now and they will most likely all have boys. Another thing that sets her apart.

It was hard to try and put a finger on these feelings, because I fully recognize that my family and I are so blessed to be loved and surrounded by an absolutely compassionate community who will support Mirabel forever. I just felt a little strange, a little isolated.

And then, tonight, the girls and I were grocery shopping at Fred Meyer and something happened that I've read about but have not experienced until now.

We were in the meat section and I had just put some sirloin in the car cart (for Luciya must always "drive" at Fred Meyer), when I did a double take of the little girl in the cart next to us. Wait, let me see her ears. Are they small? The way her almond-shaped eyes peeped at me from under her bangs. I hesitated, then cleared my throat and looked at her mom.

"Excuse me..." She looked up.

Now what??

"Um, does your daughter have Down syndrome?" She nodded. My throat closed up and my eyes welled with tears. "Um, I... I never... my baby has Down syndrome, too."

"Oh!" she exclaimed, "You have a baby! Let me see!" And she went around the cart to look at and gush over Mirabel and then she came over and gave me a hug.

Her name is Amy and her three-year-old daughter's name is Emily (!). And we ended up standing there, cart-to-cart, in the meat section, and talking for fifteen minutes. "I used to do this, too," she said, referring to approaching complete strangers with children with Down syndrome. It was my first time.

And what a wonderful first time experience. Amy was open and kind and realistic and peaceful. Her daughter was as sweet as can be, and Luciya entertained her with bagel crisps as we chatted. I commented on how the local DS infant/toddler playgroup we attended once was more frightening than connecting, and she totally shared my sentiments. She told me of some other local resources. We shared birth and NICU stories. I got to know so much about this woman, and she so easily read my need, and I felt better. I felt good.

Then, on the way out of the store I saw a man holding two little boys by the hand. One of them had Down syndrome. Emboldened, I mentioned, quickly, that my baby has Down syndrome and just moments earlier I had approached another parent for the first time. His wife came out of the store then with two other children in a cart and asked what was up and her husband said "That woman's baby has Down syndrome." Well, Nicole (this was her name), rushed right over to coo over Mirabel. She was warm and jovial and said she was very involved in the community.

Community.

It's out there. I felt it -- it's like a sweet, connecting secret that I will be able to have and hold and find, because one in 733 people out there will share in this diagnosis.

And maybe someday when Mirabel and I are in the store a timid mother will do a double take, and approach us, and I'll give her a hug.

personalities

2010-02-26T22:51:00.004-07:00

Good morning to you!

Luciya dressed herself for school today and I think it perfectly exemplifies her personality. She was so thrilled with the ensemble and proud of herself: pink polka dot tights, blue striped dress "so I can spin it around," striped jacket. Of course, Miss Lynn reported that Luciya lifted her dress and put it over another girl's head at school. After Miss Lynn had convinced her to put the dress back on. *Sigh.* This, too, is the perfect picture of her little spirit.

Scrunchy! "Me!"

Bubble Lip! Mirabel is six weeks old today!

Thrushy the Purple-Lipped Sad Clown Face. We are still fighting thrush and Mirabel had to have her mouth "painted" for the third time. This time, I also got to paint my nipples purple. John said I looked like "Barney's grandma." Sorry, ladies, he's taken.

bel: 40 days

2010-02-24T10:01:00.006-07:00

In forty days, the incarnating being, who has previously lived free of time and space in the heavenly world, has achieved the first stage of adaptation to existence in a world of space and time.

This forty days can be seen as a period of adjustment between spiritual and physical states. We thus recognize that forty days is the time needed for the spirit to adapt itself to new conditions. From Genesis we learn that Noah spent 40 days in the ark. Likewise, Christ spent 40 days fasting in the desert. We can all remember this when we are in a transition time, and allow ourselves the proper time to adapt.

The baby comes from the watery realm into the the realms of earth and air, as well as physical changes, there is a total change of consciousness that occurs.

Welcome to the world, baby girl.

Mirabel is a marvelous baby. For the past four night she has slept 8 hours straight! She is soft and nuzzly and mellow and sweet. In other words, a perfect compliment to her big sister! I am pretty sure I got a smile out of her the other day, and I am looking forward to the day she starts beaming at me.

She looks so much like Luciya did as a baby! I will have to post some comparative pictures.

I have been working on a separate blog for wondrous Mirabel (or "Bel," which I think goes along with Eryn's "eLLe" for Luciya), and I am finally ready to share! So, take a look if you want here. I am going to try and keep it focused on the Down syndrome side of things as we learn and experience this new life together.

Happy Valentine's Day!

2010-02-14T09:02:00.002-07:00

Birth Announcement

2010-02-12T19:47:00.000-07:00

I finally made a birth announcement for Mirabel! You should be getting yours in the mail soon! She is four weeks old today.

Photos by Shady Lane Studios on February 10. She got her oxygen off the very next day, but I am glad we captured the look she had for the first 3 1/2 weeks of her life!

milestones!!

2010-02-11T20:48:00.003-07:00

Both girls had some big ol' milestones today!

LUCIYA:

- Learned to ride her tricycle! So exciting. Of course I didn't have the camera, and it would have been great if I did because there she was, in true Luciya fashion, in her footie jammies stuffed into purple Crocs (thanks Danielle!), with her Adidas track suit jacket and an adult's red-and-black ski hat, figuring out those pedal all down the driveway and onto the sidewalk. Yay, Luciya!! Such a big girl!

MIRABEL:

- Slept EIGHT HOURS STRAIGHT last night. I was actually so worried I asked her doctor about it today. He was all, "You're complaining?" Well, she's only 3 1/2 weeks old... wait, 4 weeks old tomorrow! Still. But, she's doing awesome and is up to 9 pounds 1 ounce!

- Also at the doctor's office, we were given the okay to DISCONTINUE HER OXYGEN! Mirabel has a face! No more tubes! No more tape! I kissed those cheeks for days, and then

- She had her first real bath tonight! Sweet girl loved being immersed in the bathroom sink!

I gotta say it was a good day.

Love, Love, and Love

2010-02-10T11:46:00.000-07:00

Our favorite photographer, Lauren Harms, came over today to take some surprise pictures for Daddy for Valentine's Day!

holy cow! i have two girls!

2010-02-07T23:11:00.002-07:00

Some pictures of my beautiful babies this week.

this is our life now

2010-02-06T00:52:00.002-07:00

After two weeks in the neonatal intensive care, Mirabel is home.

The NICU was a long and tiring journey, and I am working on remembering as much as I can in a separate blog. I'll post the link when it's ready.

But Mirabel is home now, and doing so well. She is sweet and snuggly and just as lovely as can be. We are all crazy about her, especially her big sister Luciya, who is such a good big helper.

Let the adventure begin...!

Three Weeks

2010-02-05T23:42:00.000-07:00

Should I lament the fact that so many things didn't go according to plan?

Maybe that's why it's taken me so long to sit down and write about all of this. When Luciya was born, I blogged every day, twice a day, and marveled at everything and shared it with anyone who wanted to read all about the miraculous marvelous details of my perfect little baby.

And granted, I have less time and more work now, and perhaps that really is the reason I haven't written down all these smashed up, surreal details of the last three weeks...

Or maybe it's just been my way of staying strong. Because when I think back on that first night in the hospital, alone, exhausted, with a soft and poochy tummy that just hours earlier had been carrying this little wonder I was so very eager to meet, I weep. Because I was so lonely, and so afraid, and so... just, processing and not knowing where to begin. And it was dark and the bed was plastic and my body was completely different and in the other rooms up and down the hallways I heard the other new babies cry as they discovered the new atmosphere of Earth, with their mamas beside them.

And so I ventured out of my room and up to the NICU and I sat next to her isolette and put my head down next to it and I cried. And the nurses shut the curtains and let me have my time with her and I don't know if I prayed or begged or just tried to hold on to the notion of breathing but I went back down to my dark and empty room and I did not sleep, though I've never been more exhausted.

So should I lament the things that should have been that weren't?

I am so grateful to my midwife for not letting me get the epirdural - though I screamed and begged for it at the end - because, as she later put it, we had to follow at least some of the birth plan. The birth plan that said I preferred no internal monitoring (hello, scalp monitor and internal pressure monitor), the plan that didn't want Pitocin (hello, stalled labor), the plan that stated specifically that I wanted to have immediate and prolonged skin-to-skin bonding with my baby once it was born.

Well.

I didn't get to hold her. I hardly got to see her after I reached down and pulled her tiny body out and up to mine and noticed, with the nurses, that her lips were blue. Before I could understand, before my placenta was even out of me, there were suddenly no less than eight nurses in the room with her, and they took her from me, and John was with them, and he saw Mirabel's face, and he knew.

And I was still in the daze of holycowIjustgavebirth and I just wanted my baby back. And it took forever and then John was by my side and the nurses were still rushing around and all over my baby and our midwife turned to her and said, "There are some signs that your baby may have Down syndrome." She said it kinder than that, and gentler, but in the same frank, caring way she told us 11 months ago that we had lost a pregnancy.

This is when John told me he knew, that he had seen her face and knew, and this is when I suddenly remembered a bizarre scenario that had run through my head only the day before: an image of raising a child with Down syndrome.

And I did not cry, and I was not sad. Instead, it was the strangest peace. I still was longing to hold and meet my new child, and they let me - for one minute - before rushing her upstairs to the NICU. And I saw her face then and I kissed her soft soft cheek and then she was gone, and I tried to absorb the news again.

Have I lamented the changes? Have I regretted the diagnosis? I haven't. Do I wish that I could have had those moments back with my brand new earth angel? Yes, I do. But now she is three weeks old and I have her here, and she in sighing next to me in her newborn sleep and I love her. So I can't find that regret now, and I can't find cause to be sad anymore.

Mirabel is home. She is here and healthy and has a round belly and a dark brown swatch of hair that sticks out in all directions and a callus on her upper lip from nursing and deep blue eyes that will soon be brown that take in everything around her when she is quietly alert.

Does it pain me now to look back on the night of January 15th? Hell yes it does. I will never forget it, and it is the night many things changed inside and outside of me. But I knew then, as I still know now, that Mirabel and I were not alone. Even though we didn't have - couldn't have, in Mirabel's case - any visitors and even though the night was long and deep and dark, there was love pouring in. Enough to keep me from screaming, enough to let me feel safe. It came from you. Whatever you believe in, however it may be manifested - be it the Earth and all the stars, our guardian angels, Allah, the heavenly father, the Source, nature, God, Goddess, energy - was there with me and held me tightly. And held Mirabel, too.

She spent two long and overwhelming and tedious and surreal weeks in the NICU. In those two weeks my small family learned a lot about patience, and schedules, and Down syndrome, and enemas, and reglan, and oxygen saturation, and breast pumps, and bilirubin, and hypothyroidism, and advocacy, and sleep deprivation, and gliders, and IV placement, and holy cow my child is the champion pooper of the NICU. Those two weeks felt like an eternity in a milisecond, the strangest irony, and now, here, they are behind us, like I knew they eventually would be, and we have been home for a week and I get to hold her every single day.

I open my shirt and place her inside next to me. I wrap her up and cuddle her. I marvel at her tiny hairy ears and crooked fourth toes. I gaze at her. I gaze for hours. I amazed already at how much she has grown and changed. Just like my heart.

And I find no cause for sadness.

New Family

2010-01-30T11:01:00.000-07:00

Nice to Meet You!

2010-01-29T14:14:00.000-07:00

Thank You.

2010-01-29T11:12:00.000-07:00

Mirabel is Coming Home Tomorrow!

2010-01-28T10:59:00.000-07:00

Tonight, John and I are spending the night in the NICU with Mirabel. Tomorrow, we are bringing her home.

She will be coming home with oxygen, a nasal feeding tube, and heart and respiratory monitors. But she will be coming home.

Over It

2010-01-23T16:06:00.000-07:00

Mirabel's IV is in her scalp today. I'm over it. I want my baby home so I can do some natural mothering and hold her when I want to and when she needs it and I want to nurse on demand and smell her. I'm sick of the medicinal surroundings and driving back and forth and only seeing her twice a day and the same view of the brown and gray world outside and the beeps and pings and warnings and bells and the fact that my 8 day old baby girl has three wires on her chest, a feeding tube down her nose, oxygen pumping through a nasal canula, a saturation monitor on her foot and a FUCKING IV IN HER INSERTED INTO HER HEAD. I don't want Mirabel's threads to the angel world to be cut off by the plastic walls of her isolet. I want my sweet and confused little 2 1/2 year old to meet her sister and hold her and rock her and sing to her like we've been excitedly planning with her for the past several months. She can't even visit her in the isolation of the NICU, can't even see her. I'm sick of missing Luciya when she wakes up in the morning because I'm already en route to the hospital. I don't get to help her get dressed or put on her clothes or drive her to preschool. I want Mirabel to thrive and I want her home NOW.

That's What Friends are For

2010-01-22T10:51:00.000-07:00

I hit a wall. Processing all of this, and driving back and forth to the NICU, and trying to hold Luciya and maintain a marriage and run two businesses has been so insanely difficult. I was running on adrenaline and I crashed horribly.

So, I reached out to my friends here - Christina, Ashley, Erin, and Kara, who have all offered assistance - and I said, hey, so, yeah, I need you. And they came.

Christina and Ashley brought their daughters Maryn and Eliza over for dinner tonight while John went out to meet Ashley's husband for a beer. And I love them. And I got the renewal I needed.

The girls' personalities, in a nutshell.

Nothing like laughter and TCBY to make you feel sane again, if only for a short while.

Do I Wish We Would've Known?

2010-01-19T22:13:00.000-07:00

In a word, No. In another word, Nope.

There are several ways to find out prenatally if a fetus has Down syndrome. There are procedures like amniocentisis and CVS, and oftentimes the neuchal fold is visible in a 20 week ultrasound. I didn't even think to have any of these tests performed.

Mirabel's 20 week ultrasound picture. Cutie!

I am a thinker and a planner. I know that if I had received the diagnosis during my pregnancy that I would have begun the research process. I would have read that children with Down syndrome often have myriad other diagnoses like heart problems, kidney problems, and thyroid issues, many very serious. I would have learned that most babies with Down syndrome have a difficult time sucking, because they lack the muscle tone in their cheeks, tongue, and lips, and so cannot breastfeed well.

I may have had a hard time listening to other mothers talk about the difficulties involved in raising their "typical" babies. I may have worried.

Instead, I enjoyed a healthy, active, happy pregnancy, and relished in hearing her heartbeat on the Doppler at every prenatal checkup. Instead, I didn't let Mirabel's NICU diagnosis as a "poor feeder" keep me from being determined to nurse her. Instead, I received the diagnosis with a sense of calm, and peace, and determination.

Mirabel has surprised us so much so far. I have a feeling the surprises are going to continue.

Guidelines

2010-01-18T14:26:00.000-07:00

Some great bits of information from the Treasure Valley Down Syndrome Association's publication:

The correct name of the diagnosis is Down syndrome. There is no apostrophe (Down). The "s" in syndrome is not capitalized (syndrome).

An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome ha many other qualities and attributes that can be used to describe them. So, encourage people to use people-first language: "The person with Down syndrome," not "the Down syndrome person." A person with Down syndrome is not "a Downs."

Words can create barriers. Recognize that a child is "a child with Down syndrome," or that an adult is "an adult with Down syndrome." Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy companionship with other adults.

It is important to use the correct terminology. A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with," or "afflicted by."

Each person has his/her own unique strengths, capabilities, and talents. Try not to use the cliches that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that "all people with Down syndrome are the same."

Adopt preferred language. Because of the negative uses of the word "retard" that have become common in our society, "cognitive disability" or "intellectual disability" is preferred over "mentally retarded." Also, "typically developing" or "typical" is preferred over "normal."

Diagnosis

2010-01-17T22:14:00.000-07:00

Right off the bat, there were some physical indicators that Mirabel had Down syndrome. She was thrusting her tongue out of her mouth and her eyes were characteristically shaped. She was taken away from the birthing room immediately, and we didn't get to see her for more than two hours. When we did get to go up to the NICU to visit her, Dr. Lawrence explained some of the physical characteristics that suggested his diagnosis of Trisomy 21, though a blood test would later confirm it medically:

- Her ears are very small and are low on her head. Your and my ears are about level with our eyes at the top. Hers are much lower and are tiny!

- Her eyes are almond-shaped.

- She has a deep crease across the palm of her hand.

- She has a "pocket" on the roof of her mouth. If I stick my small finger in there, I can feel this upward indentation.

- Her nipples are very small and are spread wider on her chest than is typical.

- There is a defined "nuchal fold" on the back of her neck, which one of John's Facebook friends lovingly referred to as "hot dog neck." This is one indicator of Down syndrome that can be present in ultrasounds. ** Update: this has all but disappeared in her first couple weeks of life.

- She has weak muscle tone. (Though I am often amazed at how strong she seems!) ** Update: Mirabel's neck is still quite floppy, but during tummy time we are all very impressed with how high she lifts her head! She can also turn it side to side at three weeks!

In my research, I'm noticing other physical characteristics that are commonplace in the diagnosis, like a large space between her first and second toes. She will also likely have a smaller than normal head and stature. Isn't this all so interesting? The things that one teensy extra chromosome can do.

Both the physical and intellectual implications of Down syndrome are all across the board with every single individual, and there is no way to really know how intellectually affected Mirabel will be. I do know that she is full of surprises, though, and I do know that she will continue to amaze us all.

Mirabel has jaundice and is under the bilirubin lights.
** Update: Mirabel was in her "tanning bed" for 3 days. She hated it.
It was one of the hardest things for me to see.

Holland

2010-01-16T22:14:00.000-07:00

A friend sent me this story the day after Mirabel was born. I've seen it several times since, and I do find it so beautiful and appropriate. And I can't wait to explore Holland.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

...it's a girl!

2010-01-16T10:09:00.004-07:00

Introducing...

Mirabel Ruby

January 15, 2010

4:53 a.m.

8 lbs 6 oz

19" long

Mirabel: 1) Lovely; 2) Wonderous; 3) Of uncommon beauty; 4) Worthy of admiration

Ruby: John's late maternal grandmother

Mirabel is here! A thing of beauty, a joy forever, and a very unexpected blessing. Mirabel has Down syndrome, and will be in the NICU for a short while to address some oxygen and digestion issues. She is a sweet, miraculous baby. We are overwhelmed and overjoyed. More to come.

girl talk

2010-01-10T13:28:00.005-07:00

So in the space of a couple weeks, I received a very clear message that John and I are to expect another girl. I had a couple people say something along the lines of, "You're having another girl, right?"; I had a very vivid dream about a little girl; my best friend Kelly, who is one of the most intuitive peoploe I know, had a dream about a girl (and in this dream John and I were wearing panda costumes, so we'll have to see what that means); and perhaps most convincingly (for them): my sister- and brother-in-law did the "ring test," in which they held John's ring above my belly on a piece of my hair, and the ring immediately started turning in circles. According to Teresa, this scientific test is, like, 90% correct, and she and Matthew immediately were convinced that I am indeed carrying another female offspring. Matthew even bet me $100 that we would soon be welcoming a girl.

I took the bet. I mean, 50/50 odds, right? And, I want to see if my instincts this time are correct at all. I know I thought Luciya was a boy, too, but.... well. Two weeks from today is the due date, so.... we shall see!!

Anyway, we've also begun a poll, and I want everyone to chime in on their thoughts and feelings! There are prizes involved, people.

In comments, please list:

Your Name
Baby's DOB
Sex
Weight
Length
Time of Birth

** Reference: Due date is 1/24. Luciya was 12 days late and weighed 8 lbs 6 oz and was 21 inches long.

Let the guessing begin!!

xo

well, all of it is pretty cute

2010-01-08T19:22:00.003-07:00

Dada: Luciya, what's the cutest part of your body?

Luciya: (pointing) My 'gina.

a year in the life

2010-01-06T23:05:00.004-07:00

This was my first attempt at movie-making on the computer. It's amazing to look back on the past year, and to reflect on how quickly it flew by. A miscarriage, travels, new businesses, starting school, family time, another pregnancy... and that's just scratching the surface!

new year, new hope

2010-01-01T21:35:00.001-07:00

Three weeks to go...!

the luster of midday

2009-12-31T20:18:00.002-07:00

Okay, so I realize there is a lot of posting to catch up on, but I just put my snuggly little girl to bed ("seet deems I love you nigh-night"), the house is quiet (John's working), and outside the fresh snow is reflecting the New Year's Eve full moon. I hope everyone has experienced moonlight on snowfall - there is a crisp fullness to the dark air that is like inhaling a little slice of peace pie. I'm inspired to copy a poem I wrote from our first winter here, two years ago, and then cozy up by the fire and breathe for a bit.

Happy, happy New Year. May the hope that this evening brings inspire you and guide you to a year full of all the sweet goodness you deserve. Bless.

Ten pm and the atmosphere's brighter than dawn
From my window I see the whole length of the lawn

The clouds reflect Christmas lights, giving a glow
To the soft-fallen, still, crisp, and lightly packed snow

It quilts frozen ground in a powdery blanket
If I could I'd embrace the cold earth, and I'd thank it

For showing me grace and my breath on the air
Which carries whispers of appreciative prayer

As a child I'd look through the pane past my reflection
To the stillness and wonder of snow's clean perfection

And here we are now in our home safe and warm
As the earth holds its winter breath after a storm

And the peace that has settled gives my heart quiet thrill
Now the snow has stopped falling and the white land is still
Still.

bump watch - 34 weeks

2009-12-13T09:56:00.004-07:00

More attempts at self-portraiture. John and I are headed to the cabin for a little r&r this weekend; hopefully we can find time to take some proper belly shots. Documentation, I say!

There's a baby in there!!!!!

seeing is believing

2009-12-04T21:21:00.001-07:00

Dada: "What does Santa say?"

Luciya: "Oh - oh - ooooooooohhh!"

Dada: "Where does Santa live?"

Luciya: "At Mall."

school daze

2009-12-02T19:34:00.004-07:00

Well. Somebody went to her first day of preschool yesterday.

We've been researching and debating for a few months now, since both businesses have been keeping us so busy (a great thing), and August-December will be here before we know it, and Luciya could stand to benefit from some social interaction and structure.

A couple months ago we visited two preschools near our home, first a small Montessori-based one and then a popular daycare center. John later said it was like dining at Gary Denko in San Francisco and then going to Denny's. At the Montessori, we were shocked to see Luciya sit with the other children and use a "manipulative" in which she transferred grains of rice from one bowl to another with a pair of tweezers. Say what?! Yeah, she totally did. Quietly. Then, when we visited the daycare, it was dark and dank and smelly and the children were running buck wild. The 3-year-old group teacher was just coming in from a smoke break (!) and didn't even offer us a tour of the classroom. That, along with the fact that we know the owners of the Montessori, kind of sealed the deal for us, and we've been budgeting and sitting on the idea for two months now.

And then, we decided to just try it out. Here she is before heading to school for her FIRST DAY:

Someone has her own cubby!

We hung out for a little while (I wanted to stay all day), and she immediately got swept up in the activities that were going on, and I immediately started blubbering like an idiot. John led me out. She waved goodbye to us from the window:

John took me to get a latte, and then he had to go work a double at the restaurant. I came home, had explosive diarrhea, and then sat on the couch staring out the window, sipping my latte, for a good 15 minutes.

I finally sprang into action and scrubbed the kitchen sink, cleaned the fish bowl, did a few loads of laundry, finished up some paperwork, and forced myself not to watch the clock. A meeting I had scheduled for that morning canceled at the last minute, so I was able to pick her up from school at 11:40 on the button.

And here she is. She greeted me with "Take a picture of me!"

She received a glowing review - it will take some time to get her used to the routine, and she is the youngest in the school, but the lead teacher seems confident it's a good fit.

She did it! I did it. WE did it. And that evening we were serenaded by the most stunning full moon.

We'll be trying this four mornings a week, for 2 1/2 hours each day. Exciting stuff.

eLLe: 31 months

2009-11-22T22:02:00.011-07:00

Dear Luciya,

What' s up angel?

You little talkie-talkerson, smirky floozy, helper girl with a heart of gold and a smile for days?

What a fantastic monkey you've been lately. After a spell of not napping for a few weeks, you're right back at it (yay!). Your ability to carry on conversations means less tantrums and "no, no, noooo"s (hoorah!). There has been peace in the house, and your little sponge of a person really carries that into life (ahhhh).

You're silly and funny and tickly and smart. You're still brazen and demanding and independent and wily, but the deliberate tomfoolery has subsided a lot.

It's been really chilly outside, so we've been finding indoor activities to occupy our time. Which means, for the most part: cooking. We've used many of the leftover pumpkins from Halloween and have thus far made pumpkin seeds, pumpkin soup, pumpkin pie, and gingersnap pumpkin dessert. I got a crock pot on sale and it's been one of the best things to happen to our little family of three.

You are getting excited about August-December's (your name for the new baby) arrival, and we spend time talking about how you're going to be such a good big sister. ("I hold baby like dis, his toes on my elbow." "Baby will cry and cry and I hold baby." "He's so little!" "Baby's in my piko!" ) Occasionally, out of the blue, you'll announce "I a big sissah!"

Your memory is phenomenal, and impresses your daddy and me on a daily basis. A couple of weeks ago, you had to accompany me to the midwife's office for an hour-long glucose test. You were so good, for having to be there for an hour, and a few days later we were driving down the connector, in a totally different direction from where we'd gone to the doctor's office near the hospital. We were passing the hospital when you said, "Dat's where mama's doctor is!" Seriously? You've been there once, days ealier, from the opposite direction on the other side of the building! (Thankfully, the glucose test was fine, and I won't have to return for the 3-hour test, like I did when I was pregnant with you.)

Your daddy calls this the "Grandma Ruby" face.

Our days have been filled with snuggles and creativity and exploration and stuffed animals and long talks and little walks and Stroller Strides and baby prep and helping and high fives and knuckles and piko kisses and Elmo (gulp!) and dress up and bear hugs and enjoying every step of this fun little life. It just keeps getting better.

I love you, Luciya!

Love,

Mama

teddy bear knee

2009-11-22T21:04:00.003-07:00

So, I'm putting this picture up on my bathroom mirror for my daily smile. It was taken yesterday at a "teddy bear tea" in downtown Boise at the Saturday market. I somehow missed the part on the invite that said to dress up; as you can see, Luciya's buddies are dressed to the nines and she looks like a boy in a mushroom turtleneck. But, when it came time to pose for the group shot with the life-sized bear, my daughter seriously and lovingly reached from the front row to the back to place her hand gently on Teddy's knee. I don't know why this slays me so. But it does. I am reduced to fits of giggles.

Click on image for full effect.

30 weeks: name game

2009-11-17T20:52:00.002-07:00

I can't believe there are only 10 weeks left until our due date!

Junior's (or Teddy, or August-December)'s crib is ready with cute new bedding, I've washed and folded some little outfits and blankies, and I'm dreaming more and more about holding a new little bundle. So far, the dreams I remember have featured girl babies. But something in the back of my head keeps saying "boy." Only 10 weeks until we know!

We're not settled on any names yet, and figure we'll just have to meet the baby and decide what to call him/her.

I've been putting together a list of sorts, and I'm not discounting any names if there isn't any real hesitation (got this idea from my friend Ashley). So, all kinds of names have ended up on the list. Here's a sampling. Suggestions and input are welcome!!

GIRLS:
Felicity
Eloise
Thea
Mae
Esperanza
Penelope
Iliana
Clementine
Sonoma
Zara
Makani
Mirabel
Mahina
Luna
Elina

BOYS: (Boy names are much harder than girl names!)
Cruz
Kanoa
River
Felix
Cody
Matteo
Cassius
August

Who's it gonna be?!?!

halloween 2009

2009-11-01T21:41:00.003-07:00

We took our sweet ballerina trick-or-treating for the first time! The day before, she refused to put on a costume, so we didn't know if it was going to happen. But then she donned her little outfit (top from cousins Syona and Devon and birthday present skirt!) and felt so pretty and proud. She caught on to the idea of ringing the bell and getting treats pretty quickly!! We visited about 6 houses and had a lovely Halloween night!

bump watch - 27 weeks

2009-10-25T14:52:00.006-06:00

Photos courtesy of Photography by Luciya.

I can't believe we're already in the 3rd trimester!

Last weekend I went to the Stroller Strides national conference in San Diego. It was warm and beautiful and inspirational. I got certified to introduce a new program called Fit4Baby, which is geared toward prenatal clients. And I learned that just because a woman is pregnant doesn't mean she should necessarily "take it easy." So, I got my butt whooped while running, doing jumping jacks and crunches, and learning a slew of new exercises alongside dozens of other franchisees and instructors from all over the country.

I feel amazing. The baby is incredibly active and happy, too, and is quite the tiny mover and shaker. My body feels great and my sciatica is barely noticeable. It feels so good to know that I can be strong and fuel my baby and my body so healthily.

I feel so good, though, that I keep forgetting that I actually have quite the rotund size now, and I find myself doing silly things like getting wedged into spaces that are just too tight or shutting Luciya's car door without stepping far enough away, and totally scraping the Buddha bump. In the middle of the night I still think it might be possible to sleep on my belly for just a little while, but no, no, I can't deny it any more. And I'm having to get creative with my clothing (since the "Idaho mom" uniform of sweats and tees can only hold out so long). On Maui, I floated around in flowy dresses the entire time, but now that it's getting COLD I'm realizing I probably won't be able to subsist on that one pair of stretchy leggings for too much longer. It's a journey.

Less that 3 months to go until Baby's due date!