Saturday, January 16, 2010

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.


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.


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.


Monica Crumley said...

Awesome post, Chrystal. Amazing 3D photo... that is so M! Wow! She was showing you who she was way back when... cuz that's just who she is. Full of life and personality. I LOVE the tongue t-shirt... how appropriate and funny at the same time. You've come such a long way and I'm glad to have met you. BTW, I'm sure you're (still) the life of the party :-)

Lisa said...

God I love that little girl! She is rockin' that t like nobody's business, too ;p

Molly said...

She is SO cute. I can't stand it.

Christina M said...

She is SO cute, and her momma is so smart!

Cate said...

she is so freaking cute!

also, so big. What is it about jeans that make little girls look so much older?

I'm thankful for you!

Evelyn Parham said...

Playette is a doll. I too share your feelings. I enjoy reading your blog. Peace and blessings!

Beth said...

So adorable. And I love the shirt!
Rock on, indeed!

Lisa said...

so. freaking. cute.

Karly said...

Love her! Simply love her.

Kelli said...

Hi Chrystal! I'm so glad I found your blog! I love reading your updates and I especially loved this post!
I had a similar experience when I was referred to a specialist because of the ECF on Colin's heart. We were thrown for a loop that it can be a marker for Down Syndrome when the specialist told us after the ultrasound. Of course he didn't have the best bedside manner and when he told us, he thrust a piece of paper in front of me asking if I wanted an amnio to know for sure. He babbled on about how he was very confident that he didn't have "Downs" because I was young and all of my screenings were normal.
We followed up with him a little while later and it had resolved and he pretty much said "see, your baby is fine".
At birth we found out in the end that he DID have Down Syndrome. It was just an interesting few months of highs and lows.
So after babbling on, I just wanted to tell you that I REALLY enjoyed this post and the way you write! Thank you :)

sheree said...

OMG. You guys need to visit NOW! Malea is a bundle of cuteness OVERLOAD! That shirt is too cool!

Michelle said...

I love that tshirt-so cute! and wow your u/s pics came out so clearly! I'm sure I've commented before on this subject and getting comments when Kayla was younger (she sure does like to keep her tongue out doesn't she? She likes to play with her tongue huh? etc). Looking back on pics from the earlier years I notice she had a more open mouth, tongue out posture, but in pics from the last couple years it's not so much like that anymore ... it's a smile with the tongue in. Although there are times when she's relaxed, watching tv, or focusing on something, and the tongue comes out. We just say "Kayla tongue in" and she brings it back in and closes her mouth.

Wendy P said...

SUCH a big girl! I can't believe how grown she looks!!

Mindy said...

One of these days hopefully we can all have the pleasure of meeting you & Malea!!!! Oh & I guess Dwight too ;)

Maya said...

Great post!
She looks like SUCH a big girl here!
I agree with Cate.