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.

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

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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Meet Mirabel

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!"

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Birth Announcement

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!

Over It

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.

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.