Why write? Why pink?

I've wanted a lot of things in my life. After all, I'm American, right? I've wanted a car, a house, a boyfriend, a husband, to be  teacher, a job, a dog, etc. etc. I've been blessed throughout it all, and generally I've always gotten what I wanted. My life has been nothing short of a blessing.

The one thing I have always, always known I wanted was to be a mom. I've never been afraid of it. I've never been uncertain about it. I 100% believe that being a mom is what I am meant to do. After all, I am the world's greatest dog mom to Luna and Torrey (you may argue that teaching them to break the rules when Kevin is out of town is in fact not a "good mom" thing to do, but I'm only making sure they live out their purpose in this world, and I believe it's to make me happy with couch snuggles..:).

I tried not to be hasty with having a baby, Kevin made sure of that. We waited until the time seemed absolutely perfect. And, I think he finally got tired of my incessant begging. Last Spring we decided to try to have a baby. Suddenly, I was terrified of the one thing I had always wanted. I was scared I wouldn't be able to get pregnant, we would find out one of us was infertile or we as a team just couldn't do it. But, low and behold, we did it...and immediately.

But for some reason my fears never subsided. The day I told Kevin that we were going to be parents I was shaking and nervous. I didn't want to tell anyone at first. I struggled to tell our parents, whom we waited to tell until 8 weeks and I had seen a doctor. Then, I was nearly in tears telling my friends at the end of the first trimester. I was terrified of letting the world know our wonderful news.  I hesitated in telling my boss and co-workers at 17 weeks and I never made any public announcements. Everyone kept telling me to celebrate and enjoy this ride, and I completely believe they were/are right. But I was scared. I kept thinking to myself, what if something happens, what if I tell everyone how happy we are, and then we have to tell them something positively devastating? Everyone agreed that I was just "being me" as I often don't like to celebrate myself, and don't do praises well. But, now I wonder, perhaps there was more to it?

I'm new to this whole "mother's intuition" that everyone speaks about. But, I like the idea of telling myself I've had it from the beginning. Just go with me on this one.

We decided to find out the gender of out little one and at twenty weeks we had an appointment for our very first ultra sound. Kevin picked me up from work and I remember vividly our conversation in the car:
K: I'm nervous. I'm excited to find out.
D: Yeah. But I'm nervous. This is when we'll find out if something is wrong. They could say, "your baby has downs syndrome"...or we could hear worse.
K: Oh. Oh no. I hadn't even thought about that.

I started to wonder. Am I nuts? Am I morbid? Why am I always so damn afraid of what might be here?

I'm not nuts. I'm experiencing mother's intuition, I've decided. And after all, I've spent the last 20 weeks with this little girl squirming around inside of me, I know when something isn't right.

We had our wonderful first ultra sound with the ultra sound tech showing each and every part of our beautiful baby's little body, including the spot right between her legs letting us know we have a little girl! So, at that very moment our little one switched from "George or Nora" to simply Nora, Nora Grace. I had chosen Grace probably ten years ago and Nora when I was helping my sister name her little one. I heard that name and called dibs! I was thrilled to get to use that beautiful name...especially because my sister also loved it and had girls. I felt pressure to have a girl someday so she didn't feel sad she never got to use it:)

I am forever grateful for the ultra sound tech. She let us just be joyful, and excited. We couldn't tell at the time, but little Nora was already fighting for her life. Those moments just seeing her, looking healthy to me, were very very happy moments, and for the first time I wanted to shout it to the world that we were having a beautiful baby girl! She danced around in my belly for the entire ultra sound, telling me that she was happy!

Then, the doctor came in.
She shared with us that little Nora had a "concerning something on her neck. It's called a cycstic hygroma. I'm not sure what it means yet. But it could be any number of things, including Turner's Syndrome."
K: What is Turner's Syndrome?
Having just finished my master's  in special education, I had heard of it- but not much. Which told me this was rare. Very very rare.

My heart and soul came crashing from the highest point in my life that day, to somewhere low and dark and lonely. I'm certain wherever that is must be near Death Valley, because it shakes a lot with incessant earthquakes, and it feels suffocated by canyons and unbearable pain. I don't even really know if Death Valley has canyons, or if it is in the right part of California to have earthquakes- but I imagine you get my metaphor here?

After days of agony we saw the perinatologist. I had sent messages to everyone I knew begging them to pray and I was praying every moment of my being until I nervously walked in that room. As we got our fancier ultra sound with our seemingly more knowledgable and no-nonsense tech we saw our baby girl again. This time, I knew what to look for- that damn hygroma. I had daydreamed for hours that that fluid-filled whatever would disappear and all would be fine. But it didn't and she measured it. And then, she spent what felt like forever looking at her heart. Her little heart- the size of a dime right now. It looked fine to me, and Kevin counted each ventricle? artery? chamber? Whatever part of the heart we had read is sometimes not correct in Turner's Syndrome. He said he counted all of the right numbers. I smiled, but I couldn't shake how many pictures she took of that little heart.

The doctor came in this time only to tell us, "I'm worried about your little one, at the end of all this, I'm going to ask you if you'd like to terminate your pregnancy."

I told him to leave. I needed a break. I would have run away if I thought I could run from the pain. I screamed, I cried and then I sat still as could be. Paralyzed by fear and pain. We let him back into his office. We spent hours talking, crying and hearing all of the things that our little Nora is up against. It's too many. Her prognosis isn't good. It might be Turner's but he doesn't think so. Her heart is beating a good rate, but how can one survive with all the parts flipped around and backwards?

We have more tests to do and more feelings to feel, but for now we know this:  Nora might make it full term. She might not. She likely has a chromosomal abnormality that won't allow her life, or if it does, it won't be long or quality. If it isn't chromosomal (which is possible, but not looking likely), we know we have many, many hurdles to leap. Big hurdles it seems. We know that we are going to be with her as long as we possibly can. We know that if she does make it we will not be doing any amazing feats to keep her alive in pain or without quality of life. Kevin and I both know that we want to live life, not be alive. So, we can't possibly ask our Nora to simply be alive without living.

We have no idea how long we'll have. Maybe we'll get to meet her. Maybe we won't. But, I do know that I am having a little girl and though my heart feels smashed into a million pieces I want to celebrate that little girl every chance I get. As a mom, I've always imagined that I would get to give so much of my life to my children: going to soccer games and birthday parties; making them dinner and helping with homework; talking through the hard lessons in life and having so much fun. I'm nervous that with my beautiful Nora I won't get to do those things. She won't get to have me there to help her and celebrate with her. So, I'm writing for her. I'm writing to celebrate her. I'm writing it all for her. AND, I'm writing it in pink, because every little girl deserves her explosion of pink.

I know that there are more reasons to write, too. I also write because it feels therapeutic to me. I'm writing because while I already feel the love and support of all of the friends and family in my life near and far, I also know that I can't be in touch with everyone through this. It hurts to talk. It doesn't hurt (as much?) to write. So, for those that wish to read, read on!

I thank you for all of your outpouring of love and support. Kevin and I are forever grateful. Please don't stop praying for our little girl, Nora Grace.