Today is National Down syndrome Awareness Day. March 21st. 3/21. Trisomy 21.
It is the first time I have been aware of this day. And suddenly in my life this day has unbelievable significance. My love, my girl, my beautiful little Cora Bean was born a little over 9 weeks ago, and stunned us all by being born with Down syndrome. It was something I had never imagined, had never considered, had never expected could be possible.
But here she is in our lives. And I have never been more grateful. We are so blessed by this beautiful little being. Every time I look at her I can’t believe that I love her more than the last time I looked, but it’s true. And as much as finding out that she has Ds was an unbelievable shock, I can’t imagine her any other way. All the challenges we’ve faced, and all the fears that we have with her impending heart surgery and the challenges she will face in her future are still worth what we’ve gained.
The day Cora was born will probably forever be the happiest and the saddest day of my life. I had been ready for a baby for a number of years, but the time was finally right for me and Nick to begin our family. Over the years Nick had expressed anxiety over becoming a parent, but knew that eventually it was something he wanted. And one night, a month before our girl was conceived he told me that he was ready to have a baby. So we stopped trying to prevent a baby, and started trying to produce a baby. I know that many people have anxieties over having children. I had always thought I may have trouble conceiving. I’m sure most of that was simple anxiety, but I had a medical reason to think that it may be difficult, so I was unspeakably thrilled when we conceived on our second try. And the fact that my younger sister Erin had conceived 3 days before we did made it all seem especially serendipitous.
As any expectant mother knows, the first trimester is fraught with worry. But we made it through the first trimester and the rest of the pregnancy with flying colors. All was healthy. We declined screenings and tests, and opted only for the 20 week ultrasound, where we accidentally discovered that our little Bean was a girl.
I felt pretty well up through the end. I didn’t miss any work. I actually left work at 4pm on the day I went into labor when my contractions were about 10 minutes apart. Still 2-1/2 weeks before my due date, I fully expected to deliver late and was in denial until my contractions were about 5 minutes apart. We had planned a homebirth with the support and help of an amazing Naturopath Midwife. With the help of Nick’s massaging hands to help with back labor, and the wonderful birthing tub, I labored through the night and was fully dilated by 7am. Then came the hard part. I pushed for 6 hours. 6 hours. I know that in the hospital I would have had a C-section hours earlier. And we were pretty darn close to going to the hospital. But our last resort was vacuum assistance. I eagerly accepted, and was very happy when Miss Cora arrived at 1:14 that afternoon, to a mama so exhausted she couldn’t even hold her own baby.
And when my little girl was placed on my belly, blue and covered with vernix, she looked at me with her big blue eyes and blinked. And I just knew that something wasn’t quite as we expected. Afraid even to think it, my first thought was, “Oh my God, she looks like she has Down syndrome.” But I thought that I had to be wrong.
My memories of the sequence of events after her birth is a little hazy. I was beyond exhausted, was weak and delirious even. I do remember that at some point while I was still on the birthing stool, I asked if she looked normal. I nursed her, and was thrilled that she actually latched on and sucked, although I couldn’t even sit up in bed, I was so sore. And after both Cora and I were cared for, Mary finally came to us and told us what I will remember for the rest of my life. She told me that Cora displayed several of the physical characteristics of a chromosomal abnormality, like Down syndrome. She explained what those characteristics were (the flat bridge of her nose, the slanted eyes, the folds of skin on her eyelids, the folds of skin on her neck, the space between her toes, the crease on her hand) and told us that a blood sample taken from her placenta would tell us for sure. I was lying there, holding my sweet girl and just thinking that there was no way it could be possible. I couldn’t cry. I couldn’t even respond. I just listened. And inside my mind was racing. All I could think was “How could this happen to us?” I could think of nothing but all the other babies born to all the other mothers that were completely normal. I thought that she would live with us for the rest of our lives, that I wouldn’t return to work, that she would have to be home schooled, that she would never have a normal life or get married, that our lives would never be what we had expected. And I was ashamed. Ashamed to announce to the world that she was born. Ashamed to tell our families that we had produced a baby that wasn’t “normal.”
I had been missing calls and texts throughout the day, since my mom, dad and sister knew that I was likely in labor. But finally when the midwives were leaving I called my own mommy to tell her that Cora had arrived. And my family cried the tears that I could not.
The 24 hours after our little girl was born are difficult to remember.
But what happened next will be etched forever in my memory. The next day, Nick reluctantly left us alone to go to the pharmacy. And then my little girl started to cry and promptly turned blue. After frantic calls, we decided to wait and watch, but then she did it again. So off we raced to Legacy Emanuel Hospital, where there is a good NICU, and watched as our little baby girl turned blue again and again, while being prodded and poked by the Children’s ER staff and then the NICU staff. After an Echo, the cardiologist explained her heart defect, a complete AV canal defect that was causing her cyanotic episodes. We were told that it could be surgically repaired in a few short months and that the prognosis was good. And that cardiologically she was ready to go home. Enter newborn jaundice and feeding issues. And tears and compromises and difficult decisions. And 18 days in the NICU, being parents that could only really hold their baby while feeding in order to “let her grow”. Being parents that went home at night leaving their newborn behind. Being a mother that didn’t get to breastfeed because it was too hard for her baby, that didn’t get to snuggle up in bed with her newborn, that didn’t get to gently recover from the rigors of childbirth, that didn’t get to have a “typical newborn experience.” I did cry for myself for a few days, resentful of all the well-meaning, yet somehow still insensitive assurances. We stayed in the NICU all day, every day she was there. I am sure we annoyed the nurses and doctors.
And after 18 days, we got to take our girl home, feeding tube and all.
But it didn’t take long to be thankful. Thankful for our girl. She is so easy to love. So sweet, so beautiful, so incredible. We really can’t imagine her any other way.
And in a way, I think we were lucky that her heart condition came to the forefront. Because then Down syndrome didn’t seem so bad. And then her hospital stay caused us anguish. And again, Down syndrome didn’t seem so bad.
And now, she is home and she is our full-time daughter, and we are her parents. And we love her beyond belief. And Down syndrome indeed doesn’t seem so bad.
She is going to have open heart surgery in the very near future. And that is very scary yet at the same time we can’t wait. We can’t wait until she is not hindered by the condition of her heart. We can’t wait for her to be able to eat well and start developing well and start all the therapies that she will need to encourage her development.
And in the meantime we deal with her Down syndrome every day. I read, e-mail and talk to other parents of babies with Ds. I plan for her therapy appointments, read about the help we will need to give her, and talk to all my friends and family about my thoughts and my feelings about having a child with Ds. It really is the elephant in the room. No one talks about it until I do. And I understand that. I wouldn’t know what to say either. I had never even met someone with Ds until Cora was born.
But now I have. And now I am aware. Intimately aware. Our little Bean is only 9 weeks old, but already I can’t even imagine how I ever existed without her. It’s like I spent my whole life waiting only for her. Like I am only now myself now that she is here with me. That she is the part of me that has always been missing.
And I know that she will bring challenges. But what I unequivocally know in every bone in my body and with every breath I take, is that she is my baby, my girl, that she was born to be with me, and that I have never loved anything so very much. And I am so thankful for her.
So now I am aware of Ds. Now I am thankful , even, for Ds. Thankful for all that my girl is, and all that she brings to the world. My beautiful little girl. I love her so very much.
Happy 3/21 to us.