“After a routine prenatal ultrasound, the midwife looked at me and said, ‘I don’t know what this is, but it doesn’t look good.’
A few weeks later, when my husband and I got our baby’s diagnosis of Trisomy 18, the pressure to terminate the pregnancy was overwhelming, and it often felt like an elephant standing on my chest. It seemed like everywhere I turned, the number one concern everyone had for me was how unfair it was to my daughter and my stepson to bring a child into this world who would never be normal, and that’s if she even survived. Only 50% of Trisomy 18 babies are born alive, and of those babies, only 10% globally make it to their first birthday. I lost a baby the March prior, and I knew in my heart whether I terminated the pregnancy or lost her naturally, we would grieve one way or another. The best decision was to allow this baby to fight as long and as hard as she was willing. My older daughter was three at the time, but wise beyond her years, so I made the decision to be open and honest with her throughout the journey.
My husband left us and took my stepson, which was heartbreaking for her, and for a while I second guessed my decision to let her in on everything going on with the baby. Was all of this too much for a 3-year-old? I took it day by day, and appointment by appointment. We would sit together and search out families on social media who also had a child with Trisomy 18. We talked a lot about heaven, and how if baby sister died she would be with Jesus. I brought her to appointments with me so she could ask the doctors her own questions. As my pregnancy went on, my daughter grew close with her baby sister. She would sing to my belly, talk to her—she even insisted on buying her presents for Christmas while I was still presenting, just in case it was the only Christmas we were going to get with her. We celebrated every moment with our baby as if she was already there, so if she left us, we would still have all of these great memories with her.
Charlotte Raine was born on February 23, 2020, at 4lbs 3oz, and from the second my oldest locked eyes on her, I knew without a doubt it was all worth it. My oldest spent long days in the NICU with Charlotte and me. The doctors and nurses knew her, and she even got a white lab coat with the Mott Children’s Hospital logo embroidered on it so she could play doctor. Unfortunately, when Charlotte was two weeks old, the hospital closed down to visitors due to coronavirus, and my daughter and I had to move out of Ronald McDonald House and back home. It was heartbreaking seeing them separated. My oldest would pray every night sissy would survive long enough for her to hold her just one more time. She was scared Charlotte would forget the sound of her voice, so we went to Build-A-Bear and made a bear with her voice saying, ‘I love you, Charlotte.’ I would play it every night for Charlotte before bed and tell her all about the fun she was going to have with her big sister when she was strong enough to get out of there. I spent a lot of time crying in the shower at the hospital and begging God to allow them to have more time together.
Charlotte and I spent five months in the NICU and another month in a step-down unit. She had a tracheostomy and was vent-dependent, so I had a month of extensive training before I was able to bring her home with all of her equipment. Once we got the discharge date, my oldest daughter patiently counted the days, crossing each one off on a calendar, waiting to hold her sister again. The day we came home, one of my friends took my older daughter and kept her while I went down to the hospital to pick up Charlotte. I will never forget the look on her face when my friend dropped her off. I never believed in soulmates until that very moment, but there was no denying their deafening bond. It engulfed the room and put a lump in my throat.
We were once told Charlotte would never have the ability recognize her family, but this is the farthest from the truth. Every time big sister walks into the room, she looks for her and her eyes light up when she sees her. She looks at her like her big sister holds all of the secrets to the world, and she can’t wait to learn them from her. I often wonder if Charlotte’s is still here fighting because of the love of her sister. We all know Frozen is just a movie, but there’s something about the love these girls have for each other which makes me believe a little bit in magic, just like the love of Anna and Elsa. When I look at my girls, I know what true love looks like. Our family is a little unconventional. A single mom to two girls, one of whom has special needs. This journey is more difficult than I could ever put into words, but being with my girls every day, and seeing the way they love each other? It makes it all worth it.”
This story was submitted to Love What Matters by Megan Gaffney. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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