Tongue Talk

I'm sure that most people know that there are certain characteristics that people with Ds share. Just as with any other group of people that identify with one another, while they share some things in common, those things do not make them identical. To a keen stalker observer, though, one may be able to pick out a person with Ds in a crowd. Or you may not. Really.

All people with Ds do not look alike.
Every person with Ds does not exhibit every physical trait associated with the condition.

I just had to get that out.

Y'know, in case I haven't mentioned it here (enough), saying to someone that their child doesn't look like they have Ds? Not really a compliment.

Because if they do, they do.

Ahem.

Really, I wanted to talk about something else tonight, but that damn advocate hat just jumps on me sometimes.


I swear, there's no going back after your life has been changed the way mine has. It's not bad, just different.

I hope I'm still fun at parties.

Anyway.

So, back when I was 31 weeks pregnant with Playette, months before her diagnosis and several years after I stopped my previous blog on which I had a whopping four posts over the course of a year or so (obviously, I didn't have as much to talk about back then), I had a 3D ultrasound.

I remember that experience pretty well. As a frugal person, I was very excited that I didn't have to pay $150 to get it done because I was "fortunate" enough to have this really-minor-probably-nothing-actually thing going on with my baby's heart (so I thought) that got me access to the high-risk clinic with all of its magic technology, gratis.

I had already been admitted to the hospital because I had some funky virus thing happening and I hadn't figured out a way to break free yet. That came later.

So, that day, I only had to be wheeled down the hall with BD at my side to take a look at the echogenic focus (EIF) that had been seen previously during my routine ultrasound at 20 weeks.

While I was an avid internet reader and knew all the right questions to ask at such an event, there was never a medical professional that I encountered during the course of my pregnancy that ever dared to utter the words "Down syndrome."

I mean, really. I was 30 years old and healthy and we had no such thing in our family history so why should they have?[/dripping sarcasm]

But. I had a very good friend who was also pregnant at the time. About a month ahead of me. And when she had her ultrasound, her world stopped for about an hour because her baby also had an echogenic focus and, unlike with me, her peeps made quite the big deal about the EIF being a soft marker for Ds.

I say all this because when the Cardiologist reviewed Playette's teeny heart in the womb (the EIF was no longer present, though she does currently have a small ASD) and I asked if there was any chance that my baby would have Ds, I was quickly poo-poo'd as he told me something along the lines of, "Look at this baby. There is no reason at all for anyone to suspect Downs. There are no obvious features here."



Which is funny now (though I can't help but think how irresponsible that was of him) because check out her tongue in the second photo.

To this day, Playette presents with an open mouth posture and a protruding tongue (check out that hip lingo). For the first year of her life, it tore me up. People would mention it all. the. time.

And I would cry all. the. time.

Now though? Now, I realize that it's just a part of her and that she's in great company. One day she'll probably move past it as we continue to work with oral-motor tools and the rest of her teeth eventually come in. But maybe not.

This classic Rolling Stone's logo tee was a surprise gift from "Finn's Mom" Lisa. Some of us ladies were talking one day about the discomfort of having people look at your kid like something's wrong with them (pshaw!) and how awkward it can feel to have a l'il licker on your hands. It felt good to share and then be able to find the humor in the situation. These are our kids and we love them dearly. Thank you, Lisa, for helping us to feel empowered and for giving me another opportunity to show off yet another basket full of dirty clothes.



I am so thankful for my widened circle, full of people that either tell me about about their family members or send an encouraging email just because. I am grateful for other parents who share their stories and friends of friends that read here because they care enough about us to see how we're doing from time to time, even though they've never met us. I appreciate you all.

Rock on.