Friday, February 26, 2010


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.

Wednesday, February 24, 2010

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.

Sunday, February 14, 2010

Happy Valentine's Day!

Friday, February 12, 2010

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!

Thursday, February 11, 2010


Both girls had some big ol' milestones today!


- 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!


- 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.

Wednesday, February 10, 2010

Love, Love, and Love

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

Sunday, February 7, 2010

holy cow! i have two girls!

Some pictures of my beautiful babies this week.

Saturday, February 6, 2010

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...!

Friday, February 5, 2010

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.


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.