Later as I sat at the table eating my burger and fries, the girl came and sat with what I believe was her father and siblings, or close friends. She was on break I suppose. She had taken off her work visor and was waiting patiently for her food to arrive. I couldn't help but look over at her several times. She was enjoying the conversation very much, and when her food came she asked for the spicy ketchup with her fries.
It was in that moment that the grief hit me full force. Amos looked over at me and jokingly asked if I was having a stroke. I had stopped dead in my tracks, burger sitting in my hands, halfway in my mouth as I tried hard to will the tears not to come. I had been thinking of our Koralyn. Thinking about how when we were first prenatally diagnosed with her, and how they had gotten it wrong. Her diagnosis that is. The doctor had painstakingly sat pushing and moving the ultrasound wand around on my belly. She had sighed many times in that little dark room and when she was done the floor dropped out from under us and our lives had changed forever. Seconds, it takes seconds sometimes for your life to change, to look nothing like all the plans you have ever made. She sat below us on her chair and explained that she thought our daughter had several markers for Down Syndrome and that she would also be born with AV canal defects, which were very common in a baby with Trisomy 21. I remember asking her if that heart defect was fixable. She assured me that it was, but from the looks of things our daughter's seemed rather severe. The doctor of course asked if termination was an option for us, we would need to move quickly as I was almost past the legal mark. We of course said no, that was not an option for us so our next step would be the children's hospital and the heart specialist.
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| Bluebonnets with my boys and my big ol' belly! |
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| Happy here, unaware of the storm clouds in the distance. |
I remember when we left that office I walked into the bathroom downstairs to compose myself. I passed the mirror and stopped to really look at my belly. I always love being pregnant and having the big baby belly to carry around for many months. As I looked at my reflection I felt at peace. I knew that whatever was to come we would be okay. I knew God had us here for a reason and that he had formed this baby in my womb. I kept thinking that as long as my baby could make it, we would be okay. We would love her and give her the best of us, just like we had our two boys. I stood there in the dim light of that bathroom and rubbed my belly, telling my daughter, my sweet Koralyn, that we would be just fine. I told her we loved her and everything was going to be all right. I took a deep breath and walked out of that bathroom resolved to do the best I could for this baby of mine.
Fast forward to a few weeks later and we were given a new diagnosis of Hypoplastic Left Heart. My very first question to Dr. Roten was, is this worse or better then our original diagnosis? Her answer was that the heart defect was much more severe, but a lot of people considered it a better diagnosis because it didn't come with a chromosomal defect. Meaning our daughter would in fact, not be born with Down Syndrome. I remember blurting out that I didn't think that was better. I also remember relaying the news to our family members and the resounding response being, well at least she doesn't have Down Syndrome. I know they were only coming from a place of love and concern for us, for our baby girl, but it hurt. I explained that I thought this new diagnosis was much worse because it had a high mortality rate. I remember saying to Amos, to everyone really, that I would much rather have my daughter here with Down Syndrome then in the ground with perfect chromosomes. I stand by that statement 100%
So it was there in the Whataburger on a Friday afternoon that I sat reliving those moments that will forever be seared into my memory. It was there as I sat watching this beautiful girl with her family that I imagined how different our lives would look if the first diagnosis had been the correct one. I sat imagining what my Koralyn would sound like at almost 4, wondered what provisions we would make for her, with a diagnosis of Down Syndrome with AV Canal defects. Imagined her brothers being so sweet and gentle with her as they are with their new Tiny Sister Karis. I thought about Koralyn as a teenager with Down Syndrome. What would her dreams be, where would she work, what would her laugh sound like? Would she wear her hair long or short.
It was then that my eyes welled up and a great wave of emotion overtook me. I sat holding my breath for a moment, I didn't want to cry in front of this room full of fast food patrons. Didn't want to worry my already anxiety ridden son sitting across the table from me. Luckily Amos' comment made me giggle. He asked me if I was okay and I told him yes I was, but that I was thinking of something I would have to tell him about later.
This is how grief treats me almost four years out from the loss of my sweet Koralyn. I am able to grieve while living my life, with nary a person even realizing what is on my mind, except maybe my husband who walks this road with me, both separate and yet together. Sometimes we talk about the things that are triggers for us. How its so strange what will pull us back to those dark and scary moments of losing Koralyn. The many months of losing her really. Starting when we were prenatally diagnosed and ending when they laid her tiny coffin in the ground. It is comforting knowing I am not alone in this deep deep hurt of missing our daughter, while also trying to remain present in the life we have now. It is such a blessed life, and God has brought us so much healing. Our days are mostly sweet and even our remembrances of Koralyn are mostly sweet a balm to our souls really.
But I believe there will always be moments that stop me in my tracks, those moments when I think about what could have been.
For a moment I sat and watched a beautiful young woman who just happened to have Down Syndrome and I imagined my daughter in her place. She was happy, thriving. She was working hard at her job and enjoying the people around her. What I wouldn't give to have my sweet Koralyn fill her shoes. The man I believe to be her father sat next to her, proud and smiling back as she joked about a boy and sipped on her coke. She isn't just a chromosomal syndrome to him. Isn't just a label or a diagnosis. She is his beautiful, smart, talented, living, breathing, daughter. She is a life, a soul, a gift. So was our Koralyn. I stand by my words I said all those months ago. I would rather have my daughter here with Down Syndrome then in the ground perfect, or at least more acceptable in this world's eyes. Dare I say, if you asked that girl's family if she is perfect to them, they would all gladly and with much wisdom tell you, yes, indeed, she is just what we needed.
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| My first glimpse of Sweet Koralyn |
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| Kangaroo Care, such bliss! |
