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. Continue reading

no need to apologize.

no-need-to-apologizeDon’t feel sorry for me; I’m happier than I’ve ever been.

A few months back I was wrapping up a meeting with a potential client, when the topic of children came up. I mentioned the blog and its title (“clever,” she said) and how it became even more apt when I learned of Aisha’s Down Syndrome diagnosis.

Her brow furrowed in concern and she reached out to touch my arm.

“Oh, your daughter has Down’s? I’m so sorry…” Continue reading

stairway to a heart attack.

the long and winding stairs
it’s a long way down… 

Since the year began, Aisha’s been literally moving in leaps and bounds, from standing to walking and pushing herself into a standing position from a seated one. And yes, in that very order. And no, she still doesn’t know how to crawl. There is no rhyme or reason to the girl; she just bes who she be.

Anyhoo.

Even though she’s far more surefooted as a walker, she’s been giving the stairs a wide berth. The staircase is curved, steep and plentiful – and from her vantage point, they prolly also seem like an awful lot of work. Aisha very much dislikes a challenge (she’s definitely her father’s child Continue reading

good things come in twos.

IMG_0745_edited-1Rock out, little one. It’s your birthday!

Dear Aisha,

I can’t believe that you’re two. It literally feels like you were born, then some stuff happened, and then POOF! two. My baby big bean is officially a toddler and I don’t know how to feel (or what to say) about it.

I never knew that I could love anyone this much. I never imagined that someone so small could bring so much joy to my life. I also never would have believed that someone so small could wreak so much havoc, literally affecting every. single. decision. that I have to make. Continue reading

happy new year.

shutterstock_356848487Happy New Year from Shutterstock.

Was in the shower t’other day, thinking about how completely uneventful 2015 was for me, and how I’d like to do things differently for the New Year. And then I found myself feeling guilty for not celebrating the year my girl had, because, Down Syndrome be damned, the kid knocked it out of the fricking park in twenty-fifteen.

A recap of sorts. Aisha (in no particular order):

Turned one. Started feeding herself. Drank from a straw. Held her bottle on her own. Learned to push herself from prone into a seated position. Started daycare. Learned to say “hi,” “bye,” and “Aisha.” Can act out the entire words to “The Wheels on the Bus.” Continue reading

sucky baby.

I’ve never been this excited about a bottle, nor its contents.

Last week I popped into Staples to pick up some supplies, and picked up this water bottle on a whim. I liked the colour, size and shape; I thought it would be a nice thing to have on hand for Aisha in the future. She likes to drink water, and will take it from a cup – although she refuses to take it from one of her regular bottles.

The little spout at the top flips up and down and has a straw attached. The function is pretty much straightforward; flip up top, put spout to mouth and sip. Voila! Thirst quenched. I think we take this action for granted. I have a friend whose son is either 12 or 13 and doesn’t know how to drink from a straw due to feeding/gastro issues he had as a small infant. Aisha couldn’t figure out how to breastfeed, so I hand expressed my milk and fed it to her from a bottle; kids with Down Syndrome can sometimes have suckling issues associated with low muscle tone. There are a ton of online message boards and parent forums chock full of tips and tricks on how to get little ones with DS to drink from bottles and straws.  Continue reading

what, me worry?

the-which-asian-guy-is-right-for-me-guide-for-non-asian-girlssometimes a girl could tear her hair out.

My life has been fraught with anxiety for the better part of a year, now. It’s not the bills, squabbles with the boyfriend or any of your other run-of-the-mill daily annoyances…no, it’s something much bigger than that:

It’s Aisha.

Parent-friends (and sometimes, strangers), often say to parents to be – or even the childless: wait’ll you have kids; then you’ll see how much you worry. for as many times as I’ve heard and rolled my eyes at this nugget o’ wisdom, i’m now loathe to admit that it’s true.

I worry.

Continue reading