I had finally stopped hemorrhaging after having a sub chorionic hematoma surrounding 90% of Aiyana’s gestational sac for the first 12 weeks of pregnancy. My husband and I thought we were ‘in the clear’ and could finally relax and enjoy the pregnancy without the weekly fear of a miscarriage. We’d just announced the pregnancy a few days prior to family and friends.
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Incompatible with life. Termination. Disfigurement. Developmental issues. Death. That’s what I remember from my first learning about T18. That’s how it’s taught in medical and nursing schools. I left that appointment and immediately began researching everything I could. I joined a few Facebook groups for parents of T18 kids, living and deceased. I saw photos of young kids and babies. Some smiling, walking, eating, using tubes and traches, living and recently passed.
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I saw a tribe of parents all going through the same thing, together. It was terrifying but gave me hope that Aiyana could possibly make it. I decided to trust my baby, God and my abilities as a mom, and chose to see this through, no matter how hard or short her life would be. I could physically feel her strength inside me and knew there was more to this than the statistics but was worried about her quality of life and how this would affect our life.
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My marriage was falling apart. He wanted to terminate the pregnancy for fear of inflicting unnecessary suffering on her. He loves Leilani so much and couldn’t bear to see his new baby daughter in pain. But I felt convicted. That moment in the car ride home, where we fought about whether to terminate or continue was a turning point for us. Up until that point, the pregnancy had been a renewed sense of connection between us, after a very hard year prior, but he felt unheard and unimportant in the decision process.
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I felt, ultimately, it was my decision because it’s my body and mind that has to live with it, either way. He sobbed on the patio that night as he wrestled with the mortality of his unborn child and came to me the next day with a name, Aiyana, and the support of whatever decision I made. But we never truly came back together from that point on and are now finalizing our divorce, as Aiyana approaches five-months-old.
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I’ve always joked that Aiyana’s tagline is ‘hurry up and wait.’ The unknowns of this disorder are unrelenting at times. It eats away at you. You second-guess everything, many times over. I messily navigate co-parenting and review the first draft of our divorce decree and wonder if this has been worth it. Seeing Aiyana for the first time, after her open-heart surgery a couple weeks ago, brought me to my knees in utter defeat and made me question whether I crossed a line between fighting for life and suffering. The bone-tired, guilt I feel daily, as I drag Leilani back and forth to the hospital and Ronald McDonald House makes me evaluate my priorities as a mother and whether I’m doing what’s best for her.
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But then I see Leilani and Aiyana together. Leilani gives her a kiss and rubs her head. Aiyana flashes her a new smile. All is right in the world and I settle back in to why I’m choosing to push forward in this unexpected journey. Because Leilani deserves to spend a life with her sister and Aiyana deserves a chance to live the best life she can live, for however long that is.
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So, I trade my ‘wife’ and ‘mom’ identities for ‘single’ and ‘medical mom.’ I research and learn endlessly, so I can speak with doctors on their level and advocate for Aiyana’s needs, like her newly found liver tumor and possible cancer, seizures, GI and feeding issues and more. I do everything I can to create as much normalcy as I can for Leilani, during all of this. I tell myself ‘because Jesus’ to remind myself how I should act through this divorce into co-parenting and beyond.
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I keep moving forward and fighting because when the inevitable day comes that Trisomy 18 takes my littlest love Aiyana from us, I will be able to rest on God’s promise and the fact that I have done absolutely everything I can to love and support her. Everything I can to ensure that my girls know and love each other. And everything possible to be the mom my girls need in this life. I will know, with absolute certainty, that she made a huge and lasting impact on this world. That gives me peace.”
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Courtney was Audra’s twin. Her biggest passion in life was teaching and working with kids. She taught Preschool for many years before becoming a private Nanny for her little boy and buddy. It brought her so much joy. Not a day would go by that she didn’t take pictures of him and their adventures. Those pictures would become our most cherished treasures.
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Her last day was spent at work. When she wasn’t feeling well that afternoon, she came home and took a nap. Her yellow lab, Molly, wasn’t letting her get much rest, so she woke up and watched some television. Days before, Molly became ridiculously clingy to Court. Normally, Molly was always with her sister Audra, so this was unusual. She kept jumping on her, tugging and never wanting to leave her.
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I had been at a wake that evening, so I didn’t see much of Court. Audra was with her for a usual evening of watching television and winding down before work the next day. Eventually, we all went to sleep and that was it. I got up early and went to work the next morning. Audra followed shortly after, but saw no sign of her sister up and about. That’s when she called me. ‘Wake her up and see’ I had said.
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She knocked on the door. No answer. She tried to go in but the door was locked. Frantic, Audra searched for a key and opened the door. Molly, who usually bolts into Court’s room, was now hiding in her cage. Audra thought it was strange that Court was lying backwards on her bed. She looked peaceful, sleeping on her side like she was in a deep sleep. Audra shook Court, who rolled to her back, lifeless.
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