The table that we sat at was round, made of wood. The doctor had a New Jersey accent that would slice hard cheese, his face was weathered, lined with the wrinkles that come from age and golfing without adequate sunscreen.
“She’ll be a burden for life,” he said, “do you have any other kids?” We nodded, “yes, we have a son, Micah.” “Well,” he went on, rather brusquely, “she’ll be a burden for Micah after you are gone. You need to think about him, too.”
Mikey and I looked at one another. Think of Micah. We need to think of Micah. She’ll be a burden for life. His burden, after we are gone.
Burden, burden, burden, burden, burden, burden, burden, burden, burden. Burden, burden, burden, burden, burden, burden, burden, burden, burden. Burden, burden, burden, burden, burden, burden, burden, burden, burden. Burden, burden, burden, burden, burden, burden, burden, burden, burden.
Burden? Why? What? Huh? It’s just an extra chromosome…why is that a BURDEN?
My mind was racing in circles, laps upon itself.
I didn’t know anyone with Down syndrome. My only experiences with Down syndrome up until that point had been with the two guys who live on my small island. One was the town drunk, the other was a member of a motorcycle gang.
“I’d like to meet some people with Down syndrome or talk with some other parents of kids with Down syndrome, ” I said and my husband nodded in agreement.
“We don’t do that,” the doctor responded.
“Well, okay, how about some information then?” – I glanced over at the stacks of pamphlets and brochures against his wall, “do you have some information or something on Down syndrome or groups or parents? Something?”
“No, we don’t do that,” he repeated, “we don’t have that kind of thing,”
My husband and I were confused. I didn’t like the feel or the vibe of any part of the conversation. While I am fiercely pro-choice, I am pro-information: women MUST, I believe, have the right to choose if they want to carry life within them to fruition and birth and women MUST have accurate information to determine what the right choice for themselves is.
No information is not a choice.
That doctor was not giving me information, he was not giving me a choice. He was telling me to abort my daughter and telling me that she’d be a “burden” but he was not giving me the information that would allow me to make any type of informed choice for myself.
There is information out there.
The problem lies in getting the information in the right hands.
Lettercase is a pro-information non-profit that works hard to create and deliver information regarding Down syndrome. THIS WEEK ONLY they are pairing with Sevenly to raise funds to make sure that all medical providers have access to materials they can trust so that expectant parents get information at the moment of diagnosis. There are more than 45,000 OB/GYNs nationwide who need the information on hand, particularly as non-invasive prenatal screening becomes more prevalent.
Each purchase of a Sevenly t-shirt = a book for a family through their medical provider: http://lettercase.org/sevenly/
It’s really simple. Buy the t-shirt. Post-production money is going to go to getting the books from Lettercase out to families like us, who are sitting at round tables in doctor’s offices. When the doctor is asked for information, or better yet, right after he tells the family that their prenatal test has found that their child carries an extra chromosome, THERE WILL BE A GREAT BOOK TO GIVE THEM.
Right then. Right there.
Come on, you guys. Let’s do this.
Let’s help Moxie and her tribe by purchasing these t-shirts that will help new parents make informed choices about Down syndrome.
Buy the t-shirt! NOW!
(and it doesn’t hurt at all that the t-shirts are super cute and come in lots of sizes, colours and styles. see? giving can be getting and it’s all super good – speaking of which, you can even buy a karma necklace there, or sweet leather wristbands and stuff – it’s all going to the same cause)
Sevenly is an amazing company that has been featured in Forbes and the LA Times as a leader in social entrepreneurship, and they have worked hard to get the messaging right on this — though it’s very challenging as you can imagine. You can read more about Sevenly here:
National Center for Prenatal and Postnatal Down Syndrome Resources
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.