Monday, March 29, 2010

"Excuse me, is she Down's?"

Yikes.

Usually, when a conversation starts out that way, it doesn't really go well after.

I mean, it's not that I'm necessarily rude in response, but I do tend to walk away hurt when asked.

Or at least I used to.

We had a pretty good weekend around these parts. On Saturday, we enjoyed a 70 degree day at the beach, followed by a bonfire that night. So, in the effort to help Sunday live up to its predecessor, we decided to have brunch at a popular eatery that just happens to be owned by a Hollywood legend (no spottings, but it was awesome just the same). Stuffed and happy, we headed into town and not long after parking the car, we approached a couple sitting on a bench with their two small dogs.

Playette loves dogs and these two were just her size so I figured it would be a good opportunity for some real-life exposure since she tends to only see them in books or from afar for the most part.

The dogs were friendly, the couple was polite, the sun was shining.

Things were good.

And then it happened.

"Excuse me, is she Down's?"

[sic]! [sic]! [sic]!!!

Gah.

Stab me in my heart, why don't ya?

I mean, it is what it is, but this was a Normal Family Moment and that damn extra chromo just found a way to make its presence known.

I felt my face tighten and I knew that I should respond.

"Yes, she has Down syndrome."

At least I got a little People First Language in there. Always with the educating.

But I hated that I couldn't stare the man right in his eyes and give him the "And what's it to ya?" look that I was feeling from the pits of my soul. I wanted him to know that it was no big deal. I needed him to see that we were ok. This stranger? I wanted all of that to go from me to him, even if I'd most likely never see him again after our brief encounter.

But instead, I all-too-quickly gathered my child up and mumbled a good-bye to the couple and their dogs and moved toward the next corner where BD and his friend were waiting for us.

Except I heard something. As if there was a time delay, kind of like the conversation we were having was via satellite, I heard...

"My sister's Downs. She'll be 46 this year."

Aha. So that's why. There was the connection.

So even while I was saying my, "Have a great day," and encouraging Playette to grab my hand and leave her new found furry friends behind, I wanted to stay. I wanted to know more.

Missed opportunity, I guess.

We reached BD and his friend on the next corner and I said something about what had just taken place, but not enough for them to fully understand.

Moments later, after realizing that we were heading in the opposite direction of our destination, we were at that second corner again. More than sitting on the patio of some pub, I wanted to be back on that first corner.

So I told BD that Playette and I would meet them there shortly. Because we were going back.

Thankfully, the couple was still there, soaking in the sun on that first corner, along with those two little dogs.

I sat. We talked. I learned. She played. We got around to introducing ourselves.

=====

The man's sister loves those little dogs, too, you know.

No, Playette is not deaf. She uses ASL to bridge the gap between her ability to communicate and her ability to speak verbally.

The sister is older and was very sick when she was little.

Playette would probably enjoy having a dog of her own.

His parents started a family business right up the street several decades ago and it's quite popular to this day.

They must have been trailblazers.

Won't we bring Playette over to the store some time for some ice cream or cookies?

=====

Back and forth we went, the walls coming down with each sentence spoken until, finally, it felt ok to leave.

This was a good thing.

I looked up that man's business earlier today and found the website. In the "About Us" section, there was a family photo. Obviously taken years ago, there were the parents, two tall brothers, and a shorter sister being embraced. There she was. Seeing her smile made me smile.

We'll absolutely be making time to go get that ice cream.

Friday, March 26, 2010

No!

I've been hearing that a lot over here this past week.

Playette has been telling me "no" for everything.

It sounds more like "nuh" and is used as an answer for things that include, but are not limited to, "Would you like to eat/go to school/take a bath/go potty/brush your teeth/read a book/go to bed/stop acting like a crazy person?"

Though, seriously, when your kid is delayed in speech, it's very cool to hear any new word at first and then you realize that its presence exists with corresponding disobedience and then you have to stop feeling proud for a second and attend to the whole parenting (womp, wooommmp) thing, but then, at the first chance you get, you're all "She said NO!" to the first person who will listen.

BD left town last week. Actually, we left first, for this, and then he left, but when we came back he wasn't here, so it's kinda like he really left while we just dipped out for a second.

Regardless, Playette was in rare form because of it. She is a DADDY'S GIRL. All caps on purpose.

So when we left for Sacramento on Friday morning, and he didn't join us? I swear, she sat in that backseat plotting for the entire three-hour drive.

What's worse than your kid cutting up?...

How about your kid cutting up while you're staying at someone else's house for the weekend.

I was so reminded that I'm a first-timer at this mom thing. My loving, adorable, dare I say "obedient" baby girl turned into a fussy, angry, clingy, "who-IS-that?" person and I crumbled.

And then my immune system crumbled, too.

Really bad timing on that one.

So, I've been sick this week. Too sick, busy, tired, and more to write. Blah de blah de blah. You know the drill.

But I'm back (well, maybe at about 60%, but that's amazing, comparatively speaking).

And BD's back (bearing pralines!).

And my sweet little Playette is back, too.

She's so thrilled to see her daddy. It's really great to watch.

She's still saying "no" but, hey, she's two. That part's not going anywhere for a while ever.

Tuesday, March 16, 2010

Better than Southfork

First off, how cute are they?!


It's hard for me to write about a trip to Dallas without humming the theme song to the TV show in my head simultanously. Allow me to share my earworm with you:


So, about a month ago, that's where we were. Dallas.

And it snowed. A lot. Like, record breaking, flight-canceling, bring your heaviest coat kinda snow.

See?




I had forgotten that even though Playette was born in Snowville, USA, she hadn't actually lived there long enough to experience it.

Well, she tolerated the Dallas snow. Didn't love it by a long shot, but was interested enough to shuffle through the slush a little. Which was better than her mama. I greatly preferred staying inside near the fire or wrapped up in the nearest blanket. I've been hugely spoiled by our lack of real winters the last couple of years.

We were there for a couple of reasons. My good friend, L, inspired us to want to come and see the NBA All-Star game and we took that as a great opportunity to meet the lovely Wendy and her family.

We arrived on Thursday night, slightly delayed due to the weather. Since it was late and icky out, we stuck near the place we were staying and partook of some Irish Nachos and other delicacies at a local spot. By the way, because I know you're wondering, those're potato wedges under all that cheese and stuff. Yum.

On Friday, we got up and went to meet the fam. So. Much. Fun. The kids enjoyed each other right away and it was nice to sit and talk to Wendy in real life. Because usually she's imaginary and lives inside my computer. I think we stared at each other a lot in the beginning, trying to make sure that we weren't living in the neighborhood of make-believe.

We had pizza for lunch and then went downtown to the All-Star Jam Session. This was all about the kiddos. They played and danced and I chased down taco hats and won sweatbands in a push-up contest. Because that's how I roll.



We wore ourselves and the kids out, so the next day while Dads 1 & 2 were at work and the movies, respectively, the rest of us enjoyed the food court all that the mall had to offer.

Sidenote: What do I miss by living in a small town? The food choices. Can you believe that we don't have a food court here?! No waffle fries, no sweet tea, no cherry limeaid. *sigh*

While watching the kidlets at the play area, W and I decided that we had earned ourselves a nice dinner in Ft. Worth. Because, in case you haven't noticed, it's all about the food company of your friends.

We had fun. Have you ever heard of margaritas? They are good.

After (ahem) sleeping in on Sunday and checking out of our adorable B&B cottage, back to W's we went. There was frito pie there. I almost moved in.

But then I remembered that we had a game to go to, so while W and Crew entertained Playette for us, BD and I went off to the amazing Cowboy's Stadium and proceeded to enjoy a fantastic Valentine's Day evening.

It was The Awesome.

Let the countdown to the next visit begin.

Friday, March 12, 2010

Her Sweetness









...is my weakness.


Monday, March 8, 2010

Hurt Feelings

Before I was a mom, I used to play with other people's kids a lot. Three-year-olds were my favorite, followed closely by those little ones with two freshly erupted bottom teeth.

I would play games with them and test their reactions, read to them, laugh with them, try to teach them things.

All in small doses, y'know?

Fast forward to last night. There were were eating dinner. Playette had consumed what she decided was enough to declare herself "ahhhhh done!" but instead of saying so, she swatted the fork I held out to her out of my hand and across the table where it fell in front of BD's plate.

BD explained to her that her behavior was unacceptable and reminded her that she should use her words/signs to express herself instead. He asked her to apologize to me.

She stared at him. She pouted. For a really long time. So long that it made me uncomfortable and right about then is when I decided it was time to cry.

Not in the way that I would pretend to cry with other people's children, fully expecting them to quickly offer a remedy to their wrong.

No, this time I cried because I thought, "She doesn't get it. The synapses aren't firing. We are expecting too much of her. This is always going to happen. Forever."

It wasn't a loud cry or an ugly cry or a cry for the benefit of anyone else at the table.

It was just for a moment and it was just for me.

Playette sat there and looked at me for a while longer.

And then she took her left hand...

brought her four fingers in towards her palm...

with her thumb up...

placed her hand on her chest...

and rotated it clockwise.

She apologized.

Sunday, March 7, 2010

Words of Wisdom

This woman knows of what she speaks.

What a great reminder for today and always.

Don't Miss It

Friday, March 5, 2010

Love/Hate

I read a blog post recently that felt like the epitome of TMI. You know, it's a hard thing to share so openly that people can relate and empathize and provide much-wanted/needed feedback without crossing the line into the land of Are You Kidding Me?!

So, timidly, I begin.

In my world, the world where all things Ds-related are commonplace and welcome and so utterly normal that it breaks into my speech and activities and thoughts without me even realizing, Nella's birth story is just that. You don't really have to say much more than Nella Cordelia and the proverbial head nodding begins. All of my fellow Ds-world citizens know of her.

Just in case you don't, here she is.

It's been weeks since I first sat down and took that post in. I went through many emotions that day: understanding, sadness, elation, and then...anger and jealousy.

Wow, did it seem like they had it all together. Everything was so pretty. So very different than what I went through when placed in similar circumstances.

There was a celebration. With favors! And people. Lots of people. Supportive people.

It's like the fairy tale of Ds births.

For me, anyway.

Some people, I know, have similar experiences to Kelle.

I think what makes her different, what has led almost two thousand people (and counting) to comment on her story is that she was just living her life, already blogging about it and her cute kid with gorgeous photographs, and then Nella arrived with her bonus chromosome. Her raw emotion was captured while she was living her life the way that she would have if her baby had been born with 46. Plus, the time is right for such a story. People are ready for it.

I didn't see that at first though. I really didn't. I was angry.

It's only now that I'm realizing how totally unfair that was of me. Sure, I can feel however I want, but what did Kelle ever do to me but adore her kid from very beginning when it took me so much longer to get over myself and just appreciate the wonder that is my own daughter?

I was in such a haze in those early days. Shock. Depression. Denial.

I went through the motions, sure. I didn't want people to know that I wasn't ok. What I read told me that people would take their cues from me and I equated that to the Golden Rule: If I didn't have anything nice to say, don't say anything at all.

So I was quiet.

And when I wasn't quiet, I cried.

A lot.

I missed out on kissing toes while I was on the internet learning about how people don't want a child like mine.

Many days, I wish I had been a blogger back then. Or even that I had kept a journal. If only I could look back to the beginning. Or, as long as we're talking fantasies, that I could go back and hug the old me. The me that had my first baby just two weeks shy of my 31st birthday, confident to the point of naivité. The me that thought that Baby Girl would be the proof that my life was finally on the upswing and that white picket fences were imminent.

Today, I feel differently. I recognize that I went through what I went through and, while I wish that more people in the same situation experience Kelle's celebratory atmosphere, it's ok. It was mine and I own it. Those memories aren't going anywhere, after all.

Last night, I read more of the blog written by Nella's mama and...I felt better. She didn't set out to become famous. She was just sharing, like many of us do almost every day. She was pleasantly surprised by the outpouring of response that she's received. She continues to write and take beautiful pictures and celebrate her own journey. I think that she recognizes that there will be ups and downs and I'm glad that she has so many people on her side. Because some days are harder than others and kissing little toes is great therapy.

Each day reveals a little more of life's puzzle. So, last night as I stared at heart-shaped sandwiches and little knit caps, I learned something about this pilgrimage we're all on. Almost three years later, I'm still learning. I thank Kelle for that, knowing that we'll both continue on this winding road for many years to come.

As you may know, this blog starts at More Than One because it was only after the first year had passed that I started to come out of my shell. I started to live again and not just hesitantly place one foot in front of the other. I moved from simply surviving towards the act of thriving and I think we're all better for it.

Thank you, Kelle, for the reminder that my Littlest deserves some celebrating. So here she is, the world's only two year, eight month old newborn:



I remember agonizing over the following photo. It was the one that showed me what the pediatrician saw when he said that they had reasons to suspect that she may have Ds. Before I saw this photo, as I was flipping through the images on our digital camera one sleepless night in the hospital, I was convinced that they were wrong.


And then we brought her home. She slept a lot while I stared at her.


It was weeks before I had the courage to take her back to the hospital to have her newborn photos taken. I was not yet inspired to put her in a cute outfit so too-big pajamas it was.


I remember this day so vividly. She was three months old and I was ready to dress her up by then. I was nervous that people would recognize her challenges immediately. But, seriously, it's hard to see past the cute, isn't it?


I recall when a friend commented lovingly about her "teeny tongue" and I vacillated between being afraid that she knew(!) and thinking "but it is so teeny" - and adorable. That fear was a beast, y'all.


Man, she's cute.

I'm sorry, baby.

For all the days that I was so caught up that I didn't say so...

Mama loves you.

Tuesday, March 2, 2010

Paper Chase

Playette chews paper, any kind (towel, toilet, bills, napkins, etc.). I thought it was a baby thing, but she's not a little baby anymore. She loves the stuff. At least now, when I ask her to spit it out into my hand, she will. She knows it's not food.

[Hey! Lady who posted on the Babycenter TMR* board that kids with Ds throw food because they don't know what it is? My kid knows what food is. Just thought you'd want to know.

Not that she's reading this, but still. Grr. Ignorance.]

So.

She likes it. She chews it. She mouths a lot of things still, actually, but perhaps that is because she's still teething. (Left front tooth is finally poking through. We may get a matching set after all! WOOT!)

Does/did anyone else experience this with your kid? If so, did you do anything about it? Does it continue?


*Termination for Medical Reasons