It’s a blur of happenings, events moving swiftly upon each other like quick waves that peak in a tsunami. The blur may be due to the events themselves or may be to the way my mind works – I have brain injury, sustained from jetting out of the windshield of a car when I was 4 years old. Memories for me often shape themselves in unusual ways.
Like the day that we went to see our daughter for the first time.
I remember being in a black short dress with pirate sleeves that was from H&M, with black flared yoga pants. I liked that dress. I remember wanting to wear cherry red lipstick and not having any. I remember I wore my Earth moonboots and that Mikey didn’t like them. I remember that we passed a moss green Nissan Cube on the way there. I remember the weather was crisp, dry and clear. I think I was about 10 weeks pregnant. I know I was 36 years old (I just did the math). I also know that I was pregnant after just having had a second trimester miscarriage.
We were on our way to the special clinic, the one where they send “higher risk” pregnancies to be examined. Once there, in the dim room with the brightness of the ultrasound machine in front of us, my belly exposed with glistening gel slathered on, we saw the blinking of our baby’s heart, knew she was alive and for that, were happy. But we knew that the long pause and the lack of chatter from the technician signaled a problem. She left, and returned with the very same perinatologist who had told me that my last child had died. My heart sank as I saw him and I blurted out something along the lines of, “but the baby is alive! I know it! I can see the heart beating!”
He nodded. Yes, our baby was alive but there were problems. He showed us the line of her skin and the line of her body: they were clearly separated. She had a condition called diffuse fetal hydrops, in which her skin was completely separated from her body, with fluid lying between the two. She had heart holes. She was unlikely to make it to term. “0%” chance of survival, he gave her. He suggested that we have an amniocentesis before she died to find out the cause of the hydrops – not necessarily for her as she was clearly beyond saving, he said – but for future pregnancies.
Numb, and with aching hearts, we consented and returned a few weeks later for the test.
Despite being strongly encouraged to terminate her life on account of the Down syndrome, we chose to keep her.
Perhaps I should be more honest here: my husband chose to keep her. My husband was adamant about keeping her, saying that we needed to “play with the cards we are given.”
Continuing in this vein of honesty, I am not sure I would have kept her, had I not been with him.
Having grown up deaf, with brain injury and with my auditory processing disorder – not to mention with scars all over my face, I
know what it’s like to grow up with a disability. I know what it’s like to be excluded, mocked, and outcast. I know what it’s like to
literally have stones thrown at you, because you are different, an “other”. I have a chip in my front tooth from a time that I fought back, but the (much larger) boy was wearing a ring when he punched me in the mouth.
I have been abused. I have been raped. And I am the norm in this: statistics clearly show that up to 90% of people with disabilities have been sexually abused, a disproportionate number of those being people with intellectual disabilities.
Why then would I consciously choose to bring a daughter into this world, knowing full well that I could be exposing her to what I have been exposed to? Why would I choose to open the doors to the potential for boundless suffering? Keeping her seemed to be an act of pure selfishness.
Selfish, you see, because I did want her.
I regretted knowing that she’d be coming with Down syndrome. My angst over our decision to keep her consumed me, kept me awake for most of my pregnancy, endless insomnia. Night after night I’d relive my own most horrific memories, wondering if I made the right choice, if I had simply conscripted my daughter to a life of misery.
Scared, too of Down syndrome and of intellectual disability, I pored over personal blogs, memoirs, articles – anything and everything to ease my fear of that unknown.
I envied people that had a birth diagnosis because I felt that at least they could hold their baby as they wept or dealt with grief. Me? I had to wrap my arms around my moving belly and walk alone amongst the dark thoughts in my own head.
Walking among all the dark thoughts in my head served its purpose though. I finally realized that my daughter’s life is her own and not mine. Her path is fresh and clear and her disability is not mine. The way the world sees her and the way in which she will move and grow will be different from me. As Gibran says,
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 for so much of my pregnancy also served a purpose: it completely purged me of anything other than my thorough joy and delight in her existence.
IV. Moxie Jean
She is now 5 years old. She goes to school, is learning to read. She bosses both her older and little brother around and chases our chickens. She is sparkly, bright, curious, smart. She runs and loves soccer. She is learning to ride a bike.
She has perfect health. Her heart holes and her diffuse fetal hydrops were completely resolved in utero and she was born a healthy, hearty baby, simply with an extra chromosome.
She is beautiful.
I think back to what the doctors told me and the fear that I had and while the fear seems silly to me now in light of the child that Moxie actually is, it was terribly real at that time. The predictions of the doctors regarding who she would be were final, held no space in their tone for error, and yet they were completely wrong. They should be held accountable for their words, words which could easily have ended the life of this precious person.
Down Syndrome Resources:
- Lettercase: Getting information about Down syndrome to doctors to give to women who find their baby is coming with Down syndrome
- Down Syndrome Pregnancy
- Down Syndrome Diagnosis Network
- Down Syndrome Groups on Facebook
- The Best Books on Down Syndrome
- Resources for New Parents of a Child with Down Syndrome