your caption here

bel: 6 months

Dear Mira-Mirabella, Mira-Mirabel,

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


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


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

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


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


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

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


It's okay.

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

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

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


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

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


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


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

I love you, Mirabel!

Love,
Mama

The Beholder

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

I am stunned with love by this child.

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

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

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

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

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

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

Blessed be.

star shirt!

Luciya, August 2007

Mirabel, August 2010

eLLe - 3 years old

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

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

Love the progression.

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.}

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