I.
Reflecting on the early days of my pregnancy with Moxie, I find my memories to be a chaotic mix, three years distant now. It feels like a whirlwind of events crashing into one another, reminiscent of a powerful tsunami. This disarray might stem from the nature of the events or perhaps the way my mind processes them; I’ve had a brain injury since my childhood, a result of an accident when I was just four. My recollections often manifest in unexpected forms.
I vividly remember the day we went for our first ultrasound. I wore a black dress with pirate sleeves from H&M, paired with flared yoga pants. I had wanted cherry red lipstick but didn’t have any on hand. My Earth moonboots, which my partner Mark disapproved of, were on my feet. I can recall passing a moss green Nissan Cube on our way and the weather being crisp and clear. I believe I was around ten weeks along and, at 36 years old, I had just experienced a second-trimester miscarriage.
We were headed to a specialized clinic that catered to “higher risk” pregnancies. Once inside the dimly lit room, with the ultrasound machine glowing in front of us, I felt a mix of hope and trepidation. As the technician applied the cool gel to my abdomen, we saw the heartbeat flicker on the screen, confirming our baby was alive, filling us with joy. Yet, the technician’s long silence and her lack of conversation hinted at trouble. She left, only to return with the same perinatologist who had delivered the devastating news of my previous loss. My heart sank as I saw him, and I blurted out, “But the baby is alive! I can see the heartbeat!”
He nodded, confirming our baby’s heartbeat but explaining that complications were present. He detailed how her skin and body were separated, indicating a condition called diffuse fetal hydrops, where fluid accumulates beneath the skin. There were also holes in her heart, and he grimly informed us she had a “0%” chance of survival. He suggested an amniocentesis before her passing to understand the cause of the hydrops—not for her benefit, as she would likely not survive, but for our future pregnancies. With heavy hearts, we agreed and returned a few weeks later for the test.
II.
The amniocentesis unveiled an extra chromosome and confirmed we were having a girl. Miraculously, her diffuse fetal hydrops had resolved itself completely. Despite being strongly urged to terminate the pregnancy due to the diagnosis of Down syndrome, we decided to keep her. To be completely honest, it was Mark who insisted we continue. He believed we needed to “play with the cards we are dealt.”
In the spirit of honesty, I questioned whether I would have made the same choice without his unwavering support. Having grown up deaf, with a brain injury and auditory processing disorder, I understand the struggles of living with a disability. I know what it feels like to be excluded, ridiculed, and ostracized. I have faced abuse and violence simply for being different, and I carry scars that tell these stories.
So why would I choose to bring a daughter into a world where she might endure the same suffering? Why would I risk exposing her to the potential for immense pain? The decision to keep her felt, at times, like a selfish act. I wanted her deeply—more than anything.
III.
I found myself regretting the amniocentesis and the knowledge it brought. The awareness that my daughter would have Down syndrome filled me with anxiety and insomnia throughout my pregnancy. Night after night, I relived my own traumatic experiences, questioning if I had condemned my child to a life of struggle.
Overwhelmed by fear of the unknown, I immersed myself in personal blogs, memoirs, and articles about Down syndrome and intellectual disabilities. I envied those who received a birth diagnosis, believing they had the chance to grieve while holding their babies. I, on the other hand, could only cradle my belly, grappling with the haunting thoughts racing through my mind.
Yet, as I navigated these dark thoughts, I came to an important realization: my daughter’s life is her own, separate from mine. Her journey will be unique, and her disability does not define my experiences. As Khalil Gibran beautifully states,
“Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.”
The grief that enveloped me during my pregnancy ultimately served a purpose: it purified my feelings, leaving only pure joy and gratitude for Moxie’s existence.
Moxie Eleanor.
Light of our lives.
This article was originally published on December 21, 2010.
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In summary, the journey through my pregnancy with Moxie was fraught with uncertainty and fear, but ultimately led to profound revelations about love, choice, and the individuality of our children.