Friday, November 26, 2010


I've moved the posts from Mirabel's blog to our family blog, here. I haven't had the time to update one blog, let alone two! And while Mirabel's Down syndrome is an important, interesting, and challenging learning adventure, she doesn't need to be separated from the rest of the family because of it. So we'll see.

Monday, October 4, 2010


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.

Sunday, August 8, 2010

The Beholder

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

I am stunned with love by this child.

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

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

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

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

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

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

Blessed be.

Friday, July 16, 2010

Proud Parents

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!

Saturday, July 10, 2010

Friday, July 9, 2010

How to Survive

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.}

Saturday, May 29, 2010


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!


Friday, April 30, 2010

Twelve Pounds of Heaven Butter


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

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.



Thursday, April 29, 2010

My Mirabel: 3 Months Old

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!


Wednesday, April 14, 2010

Tuesday, April 13, 2010


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.

Wednesday, April 7, 2010


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.

Monday, April 5, 2010

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!