Do I Wish We Would've Known?

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

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

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

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.

Welcome to Holland:
c 1987 by Emily Perl Kingsley. All rights reserved

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!

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

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

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

Luciya: (pointing) My 'gina.

a year in the life

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

Three weeks to go...!

the luster of midday

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

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

Dada: "What does Santa say?"

Luciya: "Oh - oh - ooooooooohhh!"

Dada: "Where does Santa live?"

Luciya: "At Mall."

school daze

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

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

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

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

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

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!

eLLe - 30 month

Dear Luciya,

You're 2 and a half! Hello!

Today, as we were driving along, a song came on that said the word "hello." You said "hello!" and then asked to have your window rolled down. I rolled down your window and you shouted, "Hello, world!" As if that wasn't enough, you added, "I love you, world!" And then you continued to shout that numerous times. "I love you, world! I love you, world!" I was busting up and I said, "Yeah, you love the world?" And you smiled, all cheeky and proud and said, "Yeah! The world love me!"

Oh, stop it, child. But you know it's true. The world does love you.

Even if you are a strong-willed, independent, spicy, spirited, feisty, stubborn, active, ornery, bright and boastful little girl. Whew! You are the little toro in the proverbial china shop. Sometimes you nap, sometimes you don't. You've started hitting, which is the uncoolest thing ever. Where on earth does that come from? You run away when I call for you, you look me in the eye as you dump a fistful of veggies off your high chair tray, and you throw things.

You're insistent on dressing yourself these days. I thought I would have until you were at least three to pick out your outfits! But no, you need to pick out what you wear more often than not, and you're perefectly able to pull on, zip up, button, and snap. And as long as you can wear your shirt backwards, you're happy.

We're slowly getting ready for the baby's arrival, and since you're now completely able to sleep in your big girl bed (when you're not playing contentedly for 2 hours during "nap time"), we've removed the tent and set up the crib with new baby bedding. You point out that the crib is for the new baby, your "baby brudder-sissah," and you point to your tummy and the baby that's going to come out your "piko." But lately when I commend you on being a big girl (like today, when you went to your potty all by yourself, shut the door, wiped your bottom, and washed your hands with soap - hurray!), you say "I not a big girl, I a little baby." Tutu says that when your Uncle Adam was born, I was suddenly insistent on drinking out of a bottle again, so we'll see how it goes for you. You LOVE babies, though, and are always wanting to say hi to, point out, or cuddle any babies you see.

As determined and incessant and adept you are at being a pill-bottom and a shot-caller, you are just as passionate about loving, and kissing, and befriending, and remembering. Your sweet stinky breath when you wake up from naps and nightime is so delicious when it accompanies those sleepy snuggles. You love to play happily with me, your buddies at Stroller Strides, and increasingly by yourself with your toys and books. You give hugs and kisses all around and are very comfortable with strangers; you're confident that the world does indeed love you.

I think about you all the time, and am continually and increasingly grateful that you chose me to be your mama.

I love you, Luciya! Deeply and forever.

Love,

Mama

just what the shrink ordered

So, I've been learning a lot about antenatal depression, and that it affects as many as 1 in 10 pregnant women. And since I've been eating well, exercising a lot, sleeping fine, and have a good social network, I realized that there was something more going on when I was so, so sad, and anxious, and angry, and panicked to the point of near hyperventalation. So, I took some matters into my own hands, and contacted a local therapist who wpecializes in pre and post natal depression, and an acupuncturist.

First off, just talking and being heard is amazing, and secondly, why didn't anyone ever tell me about acupuncture? I leave feeling like I'm floating, even though lately I'm having to heft my body from side to side to roll over at night.

But. Therapy. John and I went to the first appointment together, and expressed our dedication to our marriage and each other. So we decided to get away for our first anniversary, and took up one of my Stroller Strides mamas to use her condo in Sun Valley for the weekend.

It was perfect. Autumn had already visited, but the aspen trees were still golden and twinkling, and the long, four-hour route we took through the mountains was dusted in snow.

We stopped by Red Fish Lake, which was closing that weekend for the season. The lodge looked just as I remembered it from childhood, and the water of the lake was remarkably clear.

We took in the sights of the breathtaking Sawtooth Mountains.

We went for a long walk along the Big Wood River and enjoyed delicious food, chocolate and wine. We shopped at Ketchum's cute little town center and visited a wonderful book shop and spen t way too much on chocolates. John let me rest one afternoon, and he went out and bought a coming-home outfit for the new baby.

Our last day there we woke up to snow, so we stayed in, cuddled, and watched a movie on the couch. How awesome is that? I don't think we've done anything like that since before Luciya was born.

Thanks to the mama who let us use her beautiful cabin, thanks to Tutu for watching Luciya, thanks to the therapist for making me feel less crazy, thanks to John for your patience, and blessings to those mamas-to-be out there who may not know how important it is to take care of yourself first. It will make it so much easier to take care of everyone else in the future. Depression is nothing to be ashamed about, and there are lots of resources out there and people who care.