In May 2020, I was in a dark place. My mental health was in shambles because of the pandemic and I was healing from the trauma of my first birth. And then an unplanned pregnancy completely turned my world upside down. We opted for NIPT at 10 weeks to find out the baby’s gender hoping it would help me connect with the pregnancy. When my OB said that she had an 84% chance of having Down syndrome, the tears came. We did a CVS to confirm, and I completely shut down. Friends offered to connect me with resources and moms in the Down Syndrome community, but I couldn’t bring myself to talk to anyone. I was ashamed of how I felt. I did not want a child with Down Syndrome. I wanted her, not the diagnosis. So many questions coursed through me: Do I have the strength to do this? Will I be a good mother to her with all of my own insecurities? Can I be the mother she deserves?
I wish I could say I quickly realized that everything would be okay, but it took me a long time to get there. I still struggle reconciling the expectations for our life and the reality of raising a child with special needs. The rest of my pregnancy was a roller coaster with extra testing and ultrasounds. My water broke at 34 weeks, and Halle came into the world with the cord around her neck in a frenzy of medical staff. I only held her a few minutes before they took her to NICU. Those first few hours were hard without her in my arms. I didn’t feel connected to her which caused more shame. When we finally did skin-to-skin later that day, I fell head over heels. Our bond was solid and so began the journey of being mesmerized by this tiny, resilient and determined human I created.
Since that week in NICU, the PDA has closed in her heart, she had tubes placed in both ears and hearing restored, two surgeries to correct numerous abnormalities in her throat impacting her eating and causing severe obstructive sleep apnea, and weekly OT. She is easy to smile but makes you work for laughs. I am completely obsessed with her. We celebrate every single inch-stone because we see every day how determined she is. I am lucky to be her mom and happy to say that I’m finally immersing myself in this amazing extra lucky community of parents.
I have read a lot of stories during pregnancy and after Halle’s birth from mothers who had a prenatal diagnosis like me. The majority of them, while absolutely wonderful and authentic, seem to have a much shorter runway to acceptance. The one thing I want those who read this to know is that whatever you are feeling in this moment is okay. I needed to mourn the child I thought I would have and it took me a long time, maybe longer than most who have walked this path. What kept me going through this grief was looking at the big picture. We only have one life on this earth and what has always sustained me is the love I have for others. Halle is no different. She has given me a fierce, unwavering love I could never imagine before she came into this world. I am grateful for and forever in awe of her.
Written by Sarah Raphael
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