oh, the three she’ll be!

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Dear Aisha,

I’ve been searching for some clever words to jot down about your having turned three. But I don’t have many; aside from a little (okay, a lot) more sass, in many ways you’ve remained my sweet pumpkin. Your daily antics still elicit a big belly laugh, and I’m always delighted upon discovering yet another new thing that you can do.  Continue reading

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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

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

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

T21 and seven months.

BabaMy big girl! Peanut’s been busy growing, y’all…

Whew!

Quite a lot happens when you’re away from the blog. My hiatus wasn’t about anything more than wanting to spend some serious loving-up time with the girl and not blogging about every little adorable thing that she was doing every moment of the day. That’s what mommy-bloggers do (not that there’s anything wrong with that); there are a glut of cute blogs out there showcasing baby beans sporting hilariously sweet micro-fashion and doing hilariously sweet (and sometimes disgustingly funny) things.

When I found out about Peanut’s Trisomy 21 diagnosis, I wanted this blog to be a resource to other parents who might be going through the same thing. But once she was born, I found that, for the most part, she more more “typical” than not…she didn’t have any major health or feeding issues, her growth and development were on track, and she ate, slept and pooped like any other kid. Down Syndrome really didn’t come into play, and I felt as though the blog wasn’t serving its original purpose.

So I stopped blogging. Continue reading

sunshine of my life.

apple of my eyeApple of my eye.

Peanut is now about 10, 10 and a half pounds, and isn’t quite as easy to cradle her in my arms as it once was. When she was a six- or seven-pounder, I would hold her close and wrap her tightly in this marled grey sweater that I wear around the house.

The other day I was trying to get her to sleep; she’s quite squirmy now and wriggles a lot before nodding off. Just as her eyelids began to droop, I pulled the sweater around her and started rocking her slowly. I thought I detected a small smile (becoming more frequent these days), and it gave me a chuckle. Continue reading

a day for down syndrome.

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A day for gettin’ Down…It’s a celebration, bishes!

Before having Aisha, I never had a cause.

Several friends and loved ones have been affected by, or lost their lives to various illnesses such as depression, cancer, heart disease, HIV/AIDS, Multiple Sclerosis, Parkinson’s or Alzheimer’s. Others have children with autism, cleft palate, juvenile diabetes, ADHD, or seizure-related disorders.

I have sympathized and sent condolences, offered words of support (or in some cases, attended funerals) and on occasion written about the battles won and lost by the people I’ve known. Yet in doing so, I never felt “close” to the situation – even when it was one of my own fighting the good fight.

Aisha’s pre-natal diagnosis of Trisomy 21 changed all of that. Continue reading