Wednesday, June 5, 2013

One in a Million

When I was pregnant with Ella I got asked a lot "Do you hope you're having a boy or a girl?" Of course I knew it didn't matter, yet I always jokingly (kindof) explained that because we already had 2 boys I didn't care if this baby was a girl since we planned on having at least 4 kids, but if it wasn't, then that last one better be a girl. I love my boys dearly, don't get me wrong. I love watching their adventurous spirit, seeing the 'traps' they make in the sand pile to catch wild animals, listening to them make elaborate little boy plans while working on their tree house, seeing them chase toads and catch worms, and even watching everything possible turn into a weapon of some sort in their hands.. But yes, I did hope for a little girl someday. Yet that desire for a little girl went beyond a yearning for pink frilly tutus, adorable oversized flower hair bows, and sparkly glitter shoes. I wanted a girl for a much deeper reason. I was always open with people who asked that I would love an opportunity to raise a girl because I feel there is a serious need for "good girls" in today's society. I'm not talking about goody-two-shoes girls who always do the right thing, please others, and follow every rule.. No, I wanted to raise a "good" girl who was strong. Capable. Confident. Who stood up to the lies society tells young women about how they should dress and behave and chose to defy those rules. Who knew how to have fun without the influence of alcohol. The kind of girl who was fun and carefree, yet has a deep heart of understanding pain. Who chose to be an example to her friends. The girl who has a rock solid relationship with God and lives her days honoring him with her body, mind, and spirit. The kind of girl with a pure heart who is beautiful inside and out. I longed for the kind of daughter who would confide in me about her dreams, giggle with me about boys, stretch out on my bed and watch movies, and ask for my advice when it came to troubles with friends. The kind of girl who had strong roots, yet when the time came, was ready to spread her wings and fly into this sinful world and make her mark.

I wanted to raise that one in a million girl.

Which is a big part of the reason I was so devastated when Ella, my girl- my girl who I had elaborately planned the world for- was diagnosed with Cornelia de Lange Syndrome (CdLS) at 6 months old. All the dreams I had for her, everything I had spoken of, it was all washed away in a single second. I was heart broken. There was no way I could raise that one in a million girl now. My dreams, my visions of the future were shattered. Why God? WHY? You knew my heart. I told you I was going to do it your way. I told you I would raise her to honor you. I told you she would be a one in a million girl. So why did you take that away from me? Why did you disable her? Why did you give my girl a debilitating rare genetic defect when she should have had the world? Why not someone else's child? Someone else who wasn't going to raise that one in a million girl? Someone else who didn't care about that. Why me? Why Ella?

I spent many months trying to hide Ella's syndrome, worrying about the way she looked, wondering if anyone noticed there was something "wrong." I made excuses for her droopy eyes (she did just wake up), and only posted pictures where they looked the most open, trying to make myself believe that the doctors were wrong because "See? See that one picture out of the thousand I took that her eyes look almost normal?' That obviously means there's nothing going on.." I thought maybe we could only hold her facing forward in church so no one behind us would see the differences. I made up reasons why she was delayed in achieving milestones (She was 3 weeks early! She spent 2 months of her first year in the hospital! If you took out that time, she would be really very close to being kinda sorta on track..) I tried to dismiss the ways she was different and force her to fit into the box I had long ago created of what my daughter would look like and act like and live like. It was too difficult to believe that my one in a million girl was not to be like I planned.

Yet, as time slowly and oftentimes painfully passed, something began to happen inside me that I wasn't even aware of. My grieving heart slowly started to heal and my eyes were opened beyond anything I'd ever experienced before. Yes, the developmental delays were still present, but I started to not notice them as much. She was late in crawling and walking and talking. Yet her smile and personality were a delight for everyone who came in contact with her to be around. The classic CdLS facial features with her slightly droopy eyelids, button nose, and small statue surely played a part in the way she looked. But when I looked at her those features weren't screaming at me anymore and I suddenly saw those things less and less. Instead, I saw strength and beauty that went beyond those features. I began to see the ways she wasn't just a "defect". I began to love her for who she was and how she was created, the ways she was beautifully herself, even if it wasn't the way the world, and unfortunately myself at times, defined beauty. I began to see her strength, fighting for her life, her tiny body hooked up to a ventilator, a machine doing the work of breathing for her when she was too weak. I saw her with tubes coming out of her body in every which way. I saw her at her weakest moment. And I saw her fighting back. I saw her struggle to overcome the odds. I saw the unique way her eyes opened, the perfect arch of her eyebrows, and her tiny toes. I saw her for the amazing uniqueness that she was instead of the nonexistent image of the daughter I was grieving the loss of, that had really only ever lived in my mind.

As I learned more about Ella's rare genetics I discovered that it is estimated that only one in every 10,000 live births result in CdLS (although some estimate it is even less than that). Still holding onto my dream, I remember thinking, 'Well, that's not quite one in a million, but I guess it's close.' And then the other day I read something new. I learned that the American Journal of Genetics states that only approximately 1 of every 15,000 fetus' with CdLS survive as far as birth. Let that settle in a moment. Only one of every 15,000 fetus' with CdLS survive as far as birthNow, if one in every 10,000 live births result in CdLS, yet only 1 of every 15,000 fetus' with CdLS even get to birth.. then that means... Well that means that if I were a smarter person there must be some sort of elaborate scientific mathematical equation I could come up with to figure out just how many pregnancies total started out with a child with CdLS, and the statistics on how few actually survive to birth and even beyond... And I'm sure I would find it to be a number.. a number that would now be nothing more than mere formality of confirming what I already know. 

Ella already is and always has been my one in a million girl.


  1. You realize Maria, that YOU are one in a million girls? Yes, you are my friend. :)

  2. This is an AMAZING post. I did not know those facts about CDLS and those numbers made my jaw drop to the floor. If a child is born with CDLS it is not a defect, it is a blessing in disguise. Loved reading your story of how you came to that realization and it was very encouraging. Blessings on both you and Ella :)