I see your 46 chromosomes, and raise you one.

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New Bean, who dis?

October is Down Syndrome Awareness  Month. I’ve been reading many of the ‘Gram posts from DS mommies whose stories are almost identical to mine: errant/concerning pr-screens during pregnancy, amnios to confirm a DS diagnosis, a push to terminate the pregnancy.

Amniocentesis is worrisome because it comes with a risk of miscarriage, but now there is a far less invasive test to confirm Down Syndrome and other chromosomal abnormalities – a simple blood test that makes it easier to diagnose.

According to some stats, a positive pre-natal diagnosis results in termination something like 92 per cent of the time.

Ninety-two per cent.

After my amnio and confirmation for the geneticist (a story I’ve told before, you can read it here: http://bit.ly/2d50Ruv) I had a  full fetal echo to ensure that Aisha’s organs were forming properly; sometimes babies with Down Syndrome have malformations in their internal organs that require surgery immediately after birth. A day later I had a follow-up ultrasound, and as I climbed up onto the table, the technician asked me if I knew why my OB had scheduled the sonogram.

“Yes. My baby was diagnosed with Down Syndrome. I had the amnio to confirm a few weeks ago, and then a full fetal echo yesterday,” I said.

“You had confirmation of Down Syndrome?” She sounded incredulous.

“Yes.” I replied. I was a little confused.

“And you kept the baby?!?!” Her tone bothered me.

“Yes,” I replied firmly, preparing myself for backlash. “I thought her life deserved a chance.”

What she did next floored me. She took both of my hands in hers, and, with tears in her eyes, said to me, “You are an angel. God Bless you. You don’t know how many times I’ve done this scan. At this stage, it’s a post-amnio/post-abortion ultrasound and usually it’s to make sure that there’s nothing left inside. That everything has been removed.”

I was stunned. She kissed my hand a crossed herself. “I’m sorry,” she said, reaching for tissue to wipe her eyes. “I’m not supposed to show any emotion one way or the other to clients. I’m supposed to be impartial to their choices. But I’m Catholic…I’ve been doing this for 15 years and  maybe only one or two people a year decide not to terminate. I believe every Child is a gift from God. Your daughter is your gift. You are blessed.”

* * * 

That appointment was almost exactly three years ago. And until I got pregnant, I didn’t know very much about Down Syndrome, or what it meant to have a child with a chromosomal difference. There were so many conflicting stories and experiences (as with everything related to parenting, I’ve come to learn) that I just stopped visiting DS parenting forums, or reading the blogs or perusing the sites of national and regional organizations that championed for the cause.

Why?

Because I wanted to focus on my experience as a mother. I wanted to focus on my girl. As a first-time parent, I wanted Down Syndrome to be secondary. It is a part of who Aisha is, but it’s not WHO she is. I’m not ashamed of her diagnosis and I honestly wouldn’t take it away from her, ’cause damned if this kid isn’t awesome AF.

She is indeed my blessing. She smooths my rough edges. She is one of the very few people who allow me to be myself. There is the abrasive, brash, sometimes offensive/sometimes funny persona that I present, but underneath all that I am a totally different person. She allows me to be that person. In the short time I have been her mother, she has also taught me patience, she has taught me grace, she has taught me what pure, unfettered, unbridled love is like. 

In fact, she teaches me something new every day. I’m constantly amazed by her; she’s a tough and stubborn little thing, and while she may encounter a few stumbling blocks on her way to next-level Little Miss Thing, she always reaches – then smashes – her milestones. I often find myself staring at her, or just standing back and watching her antics…heart filled to near-bursting with love for this little girl. 

No doubt that if she only had 46 chromosomes I’d still love her to bits, but her extra chromosome has brought something extra wonderful to my life, and I can’t imagine not having her in it.

Two has been full of leaps and bounds for Aisha, and while I can’t WAIT to see what the coming months (and years! eep!) have in store, I am mindful to just take the time and enjoy her in this moment. 

So today, and every day, I celebrate Aisha and the many DS mamas and their kids I’ve made friends with as I fumble through parenthood. I salute you and thank you for bravely showing the world that our children really are more alike than different – and that which DOES make them different, also makes them extra awesome.

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5 thoughts on “I see your 46 chromosomes, and raise you one.

  1. Yes! Yes! Yes! to the whole darn post. I couldn’t agree more, thanks Joanne. Our Michael is now two, and just like his eight siblings, he’s awesomely stubborn and no more or less challenging. But when he smiles, my heart melts and the day seems that little bit brighter. He is Michael first, a member of our large, loud family second, and the DS comes somewhere third or fourth.

    • Thank you for your words, Jodie! In spite of two being “terrible” and all that, I’m finding that Aisha is just so much fun…Michael is very lucky to have such a large family. Everyone must love him!

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