I.
Reflecting on the beginning of my journey with Moxie, I find the memories to be a chaotic blend of emotions and events, like a series of waves crashing together in a powerful rush. This whirlwind may stem from the nature of the experiences themselves or from the way my mind processes them; I have a brain injury resulting from a severe car accident when I was four. My recollections often take on unique shapes.
I vividly remember the day we first got to see our daughter. I was wearing a black dress with pirate sleeves from H&M, paired with flared yoga pants. I loved that dress! I had hoped to wear cherry red lipstick but didn’t have any on hand. My Earth moonboots, which Mikey wasn’t fond of, completed the look. I recall passing a moss green Nissan Cube on the way to the clinic, where we would have our ultrasound. The weather was crisp, dry, and clear, and I believe I was about 10 weeks along. I now realize I was 36 years old, having just done the math. This pregnancy followed a heartbreaking second-trimester miscarriage.
We arrived at the special clinic designed for “higher risk” pregnancies. In the dimly lit room, the bright ultrasound machine drew our attention. With gel glistening on my belly, we watched our baby’s heartbeat flicker on the screen, filling us with joy. However, the technician’s long silence and lack of conversation indicated trouble. She left the room and returned with the same perinatologist who had delivered the devastating news about my previous child. My heart dropped upon seeing him, and I exclaimed, “But the baby is alive! I can see the heart beating!”
He nodded, confirming that while our baby was alive, there were serious issues. He pointed out the separation of her skin from her body, indicating a condition called diffuse fetal hydrops, which involved fluid accumulating between the two. She had holes in her heart and was given a “0%” chance of survival. He suggested an amniocentesis to determine the cause of the hydrops, not for her sake but for future pregnancies. Numb and heartbroken, we agreed and returned weeks later for the test.
II.
The amniocentesis revealed an extra chromosome and confirmed that our baby was a girl. Miraculously, her diffuse fetal hydrops had resolved itself. Despite strong recommendations to terminate the pregnancy due to concerns about Down syndrome, we decided to continue with the pregnancy. To be honest, my husband was the one who insisted on keeping her, believing we should “play with the cards we are given.”
In the spirit of honesty, I must admit that had I not been with him, I might have chosen differently. Growing up deaf with a brain injury and auditory processing disorder, coupled with the scars on my face, I understand the experience of living with a disability. I have faced exclusion and mockery, and I know the pain of being different. I have endured abuse, and statistics indicate that a staggering 90% of individuals with disabilities have faced sexual abuse, particularly those with intellectual disabilities.
Why, then, would I bring a daughter into this world, fully aware of the potential for suffering? Keeping her felt like an act of pure selfishness, because I wanted her more than anything.
III.
I came to regret the amniocentesis, as knowing about the Down syndrome filled me with anxiety. My worries about our decision plagued me throughout the pregnancy, causing sleepless nights. I replayed my own traumatic memories, questioning if I had condemned my daughter to a life of hardship.
Fearful of Down syndrome and intellectual disabilities, I consumed an array of personal blogs and articles, seeking solace in the unknown. I envied those who received a birth diagnosis; at least they could hold their babies and cry together. I, however, could only cradle my growing belly while grappling with dark thoughts.
Yet, as I walked through those shadows, I eventually grasped a profound truth: my daughter’s life is her own, and her journey is separate from mine. As Khalil Gibran beautifully expressed, “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.” The grief that enveloped me during my pregnancy ultimately purified my feelings, allowing pure joy and delight in her existence to fill the void.
Moxie Eleanor.
The light of our lives.
This article was originally published on Dec. 21, 2010.
For more insights on pregnancy and home insemination, check out this informative piece on intracervical insemination and visit Make A Mom for expert advice on home insemination kits. Additionally, ACOG offers excellent resources related to pregnancy and infertility care.
Summary:
This heartfelt narrative recounts Robyn’s journey through a complicated pregnancy filled with doubts and fears following a previous miscarriage. It explores her emotional turmoil about the health of her unborn daughter, Moxie, who faced severe health challenges. Ultimately, Robyn learns to embrace her daughter’s individuality and the joy of her existence, despite the uncertainties surrounding motherhood and disability.