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!

.

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.

.

poor mila

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

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!"

.

here you go...

... In case you wanted to cut me open and see what my heart looks like.

...

Community, or, Nice to 'Meat' You

Mirabel and I went to a lovely baby shower yesterday. She wore a dress that Luciya wore to a baby shower when she was a month old and looked just precious. She was sweet, and everyone wanted to look at her. But I came home feeling a little blue. I couldn't help but feel that people wanted to see her because they know she has Down syndrome. I really can't blame them; I would want to see the baby too, and certainly not in a malicious way. But she's different. And though everyone gushed "She's beautiful" (and she is), she's not beautiful in the quintessential way. Her skin is blotchy and her hair sticks up and she's got the defining characteristics and I know this. There were three other little babies there, all boys. I have a number of pregnant friends right now and they will most likely all have boys. Another thing that sets her apart.

It was hard to try and put a finger on these feelings, because I fully recognize that my family and I are so blessed to be loved and surrounded by an absolutely compassionate community who will support Mirabel forever. I just felt a little strange, a little isolated.

And then, tonight, the girls and I were grocery shopping at Fred Meyer and something happened that I've read about but have not experienced until now.


We were in the meat section and I had just put some sirloin in the car cart (for Luciya must always "drive" at Fred Meyer), when I did a double take of the little girl in the cart next to us. Wait, let me see her ears. Are they small? The way her almond-shaped eyes peeped at me from under her bangs. I hesitated, then cleared my throat and looked at her mom.

"Excuse me..." She looked up.

Now what??

"Um, does your daughter have Down syndrome?" She nodded. My throat closed up and my eyes welled with tears. "Um, I... I never... my baby has Down syndrome, too."

"Oh!" she exclaimed, "You have a baby! Let me see!" And she went around the cart to look at and gush over Mirabel and then she came over and gave me a hug.

Her name is Amy and her three-year-old daughter's name is Emily (!). And we ended up standing there, cart-to-cart, in the meat section, and talking for fifteen minutes. "I used to do this, too," she said, referring to approaching complete strangers with children with Down syndrome. It was my first time.

And what a wonderful first time experience. Amy was open and kind and realistic and peaceful. Her daughter was as sweet as can be, and Luciya entertained her with bagel crisps as we chatted. I commented on how the local DS infant/toddler playgroup we attended once was more frightening than connecting, and she totally shared my sentiments. She told me of some other local resources. We shared birth and NICU stories. I got to know so much about this woman, and she so easily read my need, and I felt better. I felt good.

Then, on the way out of the store I saw a man holding two little boys by the hand. One of them had Down syndrome. Emboldened, I mentioned, quickly, that my baby has Down syndrome and just moments earlier I had approached another parent for the first time. His wife came out of the store then with two other children in a cart and asked what was up and her husband said "That woman's baby has Down syndrome." Well, Nicole (this was her name), rushed right over to coo over Mirabel. She was warm and jovial and said she was very involved in the community.

Community.

It's out there. I felt it -- it's like a sweet, connecting secret that I will be able to have and hold and find, because one in 733 people out there will share in this diagnosis.

And maybe someday when Mirabel and I are in the store a timid mother will do a double take, and approach us, and I'll give her a hug.

personalities

Good morning to you!


Luciya dressed herself for school today and I think it perfectly exemplifies her personality. She was so thrilled with the ensemble and proud of herself: pink polka dot tights, blue striped dress "so I can spin it around," striped jacket. Of course, Miss Lynn reported that Luciya lifted her dress and put it over another girl's head at school. After Miss Lynn had convinced her to put the dress back on. *Sigh.* This, too, is the perfect picture of her little spirit.

Scrunchy! "Me!"

Bubble Lip! Mirabel is six weeks old today!

Thrushy the Purple-Lipped Sad Clown Face. We are still fighting thrush and Mirabel had to have her mouth "painted" for the third time. This time, I also got to paint my nipples purple. John said I looked like "Barney's grandma." Sorry, ladies, he's taken.

bel: 40 days

In forty days, the incarnating being, who has previously lived free of time and space in the heavenly world, has achieved the first stage of adaptation to existence in a world of space and time.

This forty days can be seen as a period of adjustment between spiritual and physical states. We thus recognize that forty days is the time needed for the spirit to adapt itself to new conditions. From Genesis we learn that Noah spent 40 days in the ark. Likewise, Christ spent 40 days fasting in the desert. We can all remember this when we are in a transition time, and allow ourselves the proper time to adapt.

The baby comes from the watery realm into the the realms of earth and air, as well as physical changes, there is a total change of consciousness that occurs.

Welcome to the world, baby girl.

Mirabel is a marvelous baby. For the past four night she has slept 8 hours straight! She is soft and nuzzly and mellow and sweet. In other words, a perfect compliment to her big sister! I am pretty sure I got a smile out of her the other day, and I am looking forward to the day she starts beaming at me.

She looks so much like Luciya did as a baby! I will have to post some comparative pictures.

I have been working on a separate blog for wondrous Mirabel (or "Bel," which I think goes along with Eryn's "eLLe" for Luciya), and I am finally ready to share! So, take a look if you want here. I am going to try and keep it focused on the Down syndrome side of things as we learn and experience this new life together.

Happy Valentine's Day!

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!

milestones!!

Both girls had some big ol' milestones today!

LUCIYA:

- Learned to ride her tricycle! So exciting. Of course I didn't have the camera, and it would have been great if I did because there she was, in true Luciya fashion, in her footie jammies stuffed into purple Crocs (thanks Danielle!), with her Adidas track suit jacket and an adult's red-and-black ski hat, figuring out those pedal all down the driveway and onto the sidewalk. Yay, Luciya!! Such a big girl!

MIRABEL:

- Slept EIGHT HOURS STRAIGHT last night. I was actually so worried I asked her doctor about it today. He was all, "You're complaining?" Well, she's only 3 1/2 weeks old... wait, 4 weeks old tomorrow! Still. But, she's doing awesome and is up to 9 pounds 1 ounce!

- Also at the doctor's office, we were given the okay to DISCONTINUE HER OXYGEN! Mirabel has a face! No more tubes! No more tape! I kissed those cheeks for days, and then

- She had her first real bath tonight! Sweet girl loved being immersed in the bathroom sink!


I gotta say it was a good day.

Love, Love, and Love

Our favorite photographer, Lauren Harms, came over today to take some surprise pictures for Daddy for Valentine's Day!

holy cow! i have two girls!

Some pictures of my beautiful babies this week.

this is our life now

After two weeks in the neonatal intensive care, Mirabel is home.

The NICU was a long and tiring journey, and I am working on remembering as much as I can in a separate blog. I'll post the link when it's ready.

But Mirabel is home now, and doing so well. She is sweet and snuggly and just as lovely as can be. We are all crazy about her, especially her big sister Luciya, who is such a good big helper.

Let the adventure begin...!

Three Weeks

Should I lament the fact that so many things didn't go according to plan?

Maybe that's why it's taken me so long to sit down and write about all of this. When Luciya was born, I blogged every day, twice a day, and marveled at everything and shared it with anyone who wanted to read all about the miraculous marvelous details of my perfect little baby.

And granted, I have less time and more work now, and perhaps that really is the reason I haven't written down all these smashed up, surreal details of the last three weeks...

Or maybe it's just been my way of staying strong. Because when I think back on that first night in the hospital, alone, exhausted, with a soft and poochy tummy that just hours earlier had been carrying this little wonder I was so very eager to meet, I weep. Because I was so lonely, and so afraid, and so... just, processing and not knowing where to begin. And it was dark and the bed was plastic and my body was completely different and in the other rooms up and down the hallways I heard the other new babies cry as they discovered the new atmosphere of Earth, with their mamas beside them.

And so I ventured out of my room and up to the NICU and I sat next to her isolette and put my head down next to it and I cried. And the nurses shut the curtains and let me have my time with her and I don't know if I prayed or begged or just tried to hold on to the notion of breathing but I went back down to my dark and empty room and I did not sleep, though I've never been more exhausted.

So should I lament the things that should have been that weren't?

I am so grateful to my midwife for not letting me get the epirdural - though I screamed and begged for it at the end - because, as she later put it, we had to follow at least some of the birth plan. The birth plan that said I preferred no internal monitoring (hello, scalp monitor and internal pressure monitor), the plan that didn't want Pitocin (hello, stalled labor), the plan that stated specifically that I wanted to have immediate and prolonged skin-to-skin bonding with my baby once it was born.

Well.

I didn't get to hold her. I hardly got to see her after I reached down and pulled her tiny body out and up to mine and noticed, with the nurses, that her lips were blue. Before I could understand, before my placenta was even out of me, there were suddenly no less than eight nurses in the room with her, and they took her from me, and John was with them, and he saw Mirabel's face, and he knew.

And I was still in the daze of holycowIjustgavebirth and I just wanted my baby back. And it took forever and then John was by my side and the nurses were still rushing around and all over my baby and our midwife turned to her and said, "There are some signs that your baby may have Down syndrome." She said it kinder than that, and gentler, but in the same frank, caring way she told us 11 months ago that we had lost a pregnancy.

This is when John told me he knew, that he had seen her face and knew, and this is when I suddenly remembered a bizarre scenario that had run through my head only the day before: an image of raising a child with Down syndrome.

And I did not cry, and I was not sad. Instead, it was the strangest peace. I still was longing to hold and meet my new child, and they let me - for one minute - before rushing her upstairs to the NICU. And I saw her face then and I kissed her soft soft cheek and then she was gone, and I tried to absorb the news again.


Have I lamented the changes? Have I regretted the diagnosis? I haven't. Do I wish that I could have had those moments back with my brand new earth angel? Yes, I do. But now she is three weeks old and I have her here, and she in sighing next to me in her newborn sleep and I love her. So I can't find that regret now, and I can't find cause to be sad anymore.

Mirabel is home. She is here and healthy and has a round belly and a dark brown swatch of hair that sticks out in all directions and a callus on her upper lip from nursing and deep blue eyes that will soon be brown that take in everything around her when she is quietly alert.

Does it pain me now to look back on the night of January 15th? Hell yes it does. I will never forget it, and it is the night many things changed inside and outside of me. But I knew then, as I still know now, that Mirabel and I were not alone. Even though we didn't have - couldn't have, in Mirabel's case - any visitors and even though the night was long and deep and dark, there was love pouring in. Enough to keep me from screaming, enough to let me feel safe. It came from you. Whatever you believe in, however it may be manifested - be it the Earth and all the stars, our guardian angels, Allah, the heavenly father, the Source, nature, God, Goddess, energy - was there with me and held me tightly. And held Mirabel, too.

She spent two long and overwhelming and tedious and surreal weeks in the NICU. In those two weeks my small family learned a lot about patience, and schedules, and Down syndrome, and enemas, and reglan, and oxygen saturation, and breast pumps, and bilirubin, and hypothyroidism, and advocacy, and sleep deprivation, and gliders, and IV placement, and holy cow my child is the champion pooper of the NICU. Those two weeks felt like an eternity in a milisecond, the strangest irony, and now, here, they are behind us, like I knew they eventually would be, and we have been home for a week and I get to hold her every single day.

I open my shirt and place her inside next to me. I wrap her up and cuddle her. I marvel at her tiny hairy ears and crooked fourth toes. I gaze at her. I gaze for hours. I amazed already at how much she has grown and changed. Just like my heart.

And I find no cause for sadness.