Mirabel Ruby blessed our lives on January 15th, 2010. She is a sweet, beautiful, bright-eyed little girl, who joined her older sisters Eryn and Luciya to make our family complete. Mirabel has Down syndrome, and her diagnosis is why we have dedicated this blog to her. It is a lovely and challenging learning process, and we are excited to celebrate her and see her life unfold.
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.