Twelve Pounds of Heaven Butter

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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

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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

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!

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Sisters

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

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

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.

colorful chicks

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

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

The Girls.
Spring 2010

Physical Therapy

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!

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March for Babies

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

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

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

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.

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poor mila

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