And just like that, she was gone. Her warm body turned cool in my warm embrace. 4:54 p.m. on May 11, 2012, a date and time that will forever be ingrained into my heart.
21 weeks before . . . My husband and I were excited to celebrate our first Christmas together as a married couple. We already set up our clearance Christmas tree with sparse decor in our 700 square foot apartment. It was minimal but more than enough.
On December 14, 2012, we were surprised to find out that our honeymoon baby was a girl. It was a special moment as our parents were there with us when they announced the gender via ultrasound. I couldn’t wait to buy pink and frilly everything.
Things took a drastic turn the next Monday as we were called in and referred to a maternal-fetal medicine doctor. Over the course of the rest of my pregnancy we found out our daughter, Noel Christin, had a terminal condition called HLHS (hypoplastic left heart syndrome). This condition led to other complications with her heart, brain, and kidneys. She developed the condition due to having an extra third chromosome, trisomy 3.
After receiving the devastating news, we were told to get genetically tested. We found out that my husband, Caleb, carries a rare defect called a balanced translocation. (A condition in which part of a chromosome has broken off and reattached in another location.) A part of his 10th chromosome and 3rd chromosome were switched. This means that he is healthy, but any of his biological children will most likely receive a terminal condition due to his perfectly balanced imbalance. Throughout our pregnancy, we clenched to hope and sat in sorrow. How could something so full of life be given a death sentence? I felt life and love. But also, grief and despair.
We had Noel Christin (Noel for my mom’s maiden name backward, Leon, and Christin is my middle name. I wanted three generations to share names) for 15 glorious days.
Within that time she was constantly held. We celebrated her one-week birthday and showered her with unconditional love. A love so deep and pure, strong and resilient. A love we got to experience because she was made in and by love. She called me home for 39 weeks. The honor was and still is all mine. Every stretch mark and scar, visible and invisible is a significant reminder that I am hers and she is mine.
Those fifteen days taught me that joy and grief can coexist. We buried Noel on May 16, 2013. That day was filled with love and heartbreak. We knew this wasn’t the end, but weren’t sure how we would move forward from here. Noel was our first love but not our last loss.
Read part 2 of this story here.
Originally published May 2022.
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