I.
As I reflect on the early days of my pregnancy with Moxie, my memories swirl together in a chaotic haze, much like a series of rapid waves leading up to a powerful tsunami. This disarray could stem from the tumultuous events themselves or perhaps from my unique way of processing memories, shaped by a brain injury I sustained at age four from a car accident.
One vivid memory stands out: our first glimpse of our daughter. I wore a black dress with pirate-like sleeves, paired with flared yoga pants from H&M, a favorite outfit of mine. I had hoped to wear cherry red lipstick but didn’t have any on hand. My Earth moon boots drew disapproval from my partner, Jake. I recall passing a moss green Nissan Cube on our way to the clinic that specializes in “higher risk” pregnancies. The weather was crisp, dry, and clear. I was around 10 weeks pregnant and 36 years old. This pregnancy followed a heart-wrenching second-trimester miscarriage.
Upon arriving at the clinic, we entered a dimly lit room where the bright ultrasound machine awaited us. With my belly exposed and covered in gel, we saw our baby’s heartbeat flicker on the screen, and for a moment, joy filled our hearts. However, the technician’s long silence and absence of chatter hinted at something wrong. She soon returned with the same perinatologist who had delivered the devastating news about my last pregnancy. My heart sank, and I blurted out, “But the baby is alive! I can see the heart beating!”
He confirmed that our baby was alive but faced significant challenges. He pointed out the separation between her skin and body, diagnosing her with diffuse fetal hydrops. She had heart defects and a 0% chance of survival. He suggested we consider amniocentesis to uncover the cause of the condition—not for her sake, as she was clearly beyond saving, but for future pregnancies. Numb and heartbroken, we consented and returned a few weeks later for the test.
II.
The amniocentesis revealed an extra chromosome, indicating our baby was a girl. In a twist of fate, her diffuse fetal hydrops had resolved. Despite recommendations to terminate the pregnancy due to the diagnosis of Down syndrome, we decided to carry her to term. I must admit, Jake was the driving force behind this decision, insisting we “play with the cards we are given.”
If I’m being honest, I’m not sure I would have made the same choice without him. Having experienced life as a deaf person with a brain injury and enduring my share of mockery and exclusion, I wrestled with the fear of exposing my daughter to the same suffering I had faced. My own painful past made the idea of bringing a child into the world fraught with dread, and at times, I felt it was a selfish act to keep her.
III.
I found myself regretting the amniocentesis, wrestling with the knowledge that our daughter would have Down syndrome. The decision to keep her consumed my thoughts, leading to sleepless nights filled with anxiety. I revisited my darkest memories, questioning whether I had condemned her to a life of suffering.
Desperate for reassurance, I scoured personal blogs, memoirs, and articles to ease my fears about the unknown. I envied those who received a birth diagnosis, as they could hold their baby while navigating their grief. I, on the other hand, could only cradle my belly, grappling with the shadows in my mind.
Yet, as I walked through those dark thoughts, I came to a profound realization: my daughter’s life is her own, separate from my own struggles. Her journey will be different, shaped by her own experiences and identity. As Khalil Gibran eloquently puts it, “Your children are not your children. They are the sons and daughters of Life’s longing for itself.”
The grief that enveloped me throughout my pregnancy ultimately cleared the way for pure joy and gratitude for her existence—Moxie Eleanor, the light of our lives.
This article was originally published on December 21, 2010.
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Summary
In this reflective piece, Lila Thompson recounts her emotional journey through pregnancy with her daughter, Moxie, who was diagnosed with Down syndrome. From the initial joy of seeing her baby’s heartbeat to the overwhelming decisions about her future, Lila grapples with her fears and regrets, ultimately finding clarity and joy in her daughter’s existence. This heartfelt narrative emphasizes the uniqueness of each individual’s journey and the importance of embracing life as it unfolds.
Keyphrase: pregnancy journey with Down syndrome
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