I see your 46 chromosomes, and raise you one.

untitled-design
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

Advertisements

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

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

she’s a ten.

happy girl copyShe’s my star.

My little-big bean turned ten months about a week before Christmas and for some reason it was very emotional for me.

She is becoming very active now, rolling and army-crawling about to get to where and what she wants. I always knew she’d grow to be a stubborn little thing, and damned if the child hasn’t proved me right thus far. But she is also extremely loving and charming, ever-ready with a smile (any opportunity to show off her new teeth), and she makes me laugh-out-loud guffaw at least a couple times a day.

Parents of children with Down Syndrome are all too familiar with The List Of Things Your Child Won’t Ever Do, and for the most part, I’ve managed to ignore the naysayers and let the girl develop as she may, with a little help from her DT Patti and OT Amanda. Continue reading

hurried holiday greetings.

WP_20141226_004 1These two cuties would like to wish you a Merry Christmas, and Happy New Year!

Hey y’all!

I know..I’ve been away from the blog for a bit – what else is new? But this time, with good reason…I’ve started freelancing full-time. So on top of being a full-time stay-at-home mummy, I’m also a full-time writer, and gat dayum if this shit doesn’t take up all my free hours…but more on that another time.

I just wanted to pop online to wish all of you a Merry – albeit belated – Christmas, or however you choose to celebrate (or not). I did not go overboard for Aisha’s first holiday ho-down…I’m just too practical for that sort of thing. What’s the point in lavishing her with tons of gifts when I know she’d much rather play with the paper (which is exactly what she did)?

(I did get her a total of three gifts, all adorable, and only because I had unused gift cards left over from my baby shower. The funny thing is, with all the bustle of the big day, I plumb forgot to give them to her until the night was almost over. Bad mommy.)

With that said, I hope to give proper updates in the coming days…I’ve a bit of time off from the drudgery working before it all starts up again in the New Year. There are only four days until 2015 (!) and if I don’t pop on before then, I hope you all have a wonderful time, wherever and however you spend it.

Kisses!

 

she of a thousand names.

What's in your name? via OnomastikFun fact: We considered the name Poppy, after CNN’s Poppy Harlow, but when it was pointed out
that kids would end up calling her “Poopy,” 😦 we put the kibosh on that.
     .
Before Aisha was born, her father and I had taken to calling her Peanut, based on the way she looked in her ultrasound. Right after her delivery, and for a few weeks following, she was nothing but a big face and cheeks, so I took to calling her Bobblehead, Cheeks McGee or Colonel Fathead (in the most loving way, of course).

Over time, she has become Le Babe, El Bebe, Baba, Baba-lu and Baba-licious. Our neighbours are Sri Lankan, and a term of endearment in their native Tamil is, Chunkitty Bala (I’ve no idea how to spell it, so I’m going with phonetics. My apologies). My father is the only one who calls her that, but more often than not, he just shortens it to “Chunk”. This is perfect, since she is indeed a little chunk o’goodness. Her Portuguese father calls her Amor, or Menina and my least favourite, Boneca – it just means “doll,” but I hate the way it sounds: buh-NEH-kah.

I imagine one day, when she is old enough to speak, she will filter through the nicknames and respond to only those that she likes. For now, though, she is Peanut to her father, Chunk to her grandfather, plain ol’ Aisha to her grandmother, and Baba to me.

The dog, on the other hand, couldn’t care less. 😀