Tuesday, December 27, 2011

Influenced

Playette has been in a typical daycare or preschool environment for nearly four years now.

Our purpose in going that route was to expose her to other children, since she had no siblings at home, and get some positive influences from her typically developing peers.

For the most part, we've been pleased. She's great at playing and learning amongst other children and has plenty of friends that she asks for by name. She also has friends with varying unique needs. We're all about equal opportunity over here. One of her buddies in her class last year in CA uses a wheelchair and I loved that, to Playette, she was just one of the gang. Which is as it should be.

Many adults could stand to learn a lot from these kiddos.

Along with the great stuff, we get some gems that we know can only have come from being in school.

The latest is the evolution from "uh-oh" to "OOOOOHHHHHHH!"

It cracks me up. Let's say you drop something. She is quick to point and yell, "OOOOOHHHHHHH!"

Like she caught you do something wrong and she's about to tell or as a warning that you're about to get in big trouble.

It's funny because, really...how much trouble am I apt to be in for dropping my keys? And who is going to punish me for that offense, exactly?

I love that little nut.

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We just got in from vacation last night, so we're buried in washing tons of warm-weather gear while also trying to put together something that resembles Christmas morning for the kidlet.

Sure it's two days later and after 6pm.

How much you wanna bet she won't care?

More later...

Sunday, December 25, 2011

From: Us, To: You



Monday, December 19, 2011

Date Night? Meet Murphy's Law.

I know this wasn't an option to select yesterday, but I just felt like sharing this story.

First of all, BD is a great husband, y'all.

I won't say that he doesn't get on my nerves and that I don't make him cringe sometimes, because...well, that would be a lie. We're human and, I guess, a pretty typical married couple. We laugh, we fuss, we work as a team. All that good stuff.

So, last Friday, I was wayyy tired. It had been a rough week at work and when I got home, all I wanted to do was crash.

But, here's some relevant history. There's this restaurant I've been wanting to try for a while and then POW! -- there was a 50% Groupon-type deal offered on Thursday so I bought two. I knew I'd want to go back because it's supposed to be that good. I was excited so I asked BD if he thought that maybe we could go over the weekend since, remarkably, we had nothing planned for once. He grumbled something-or-other and we went about our lives.

Well, apparently, he had been planning a night out for us, to this very place, for a while. On Friday night, after Playette finished her dinner, he got her into her pajamas and shoes...wait. Pajamas and shoes? Where were they going? Did that mean I'd get the TV and couch all to myself? WOOHOO!

Obviously, I'm easy to please.

I helped them out the door, totally fine with whatever was going on.

And then he came back. Alone.

Crap. Where'd he leave the kid? And was it on purpose?

He then told me that he had signed up for Parents' Night Out at her school and that we were going on a date.

How sweet, right?

As we drove, I realized that I could think of nothing in this part of town aside from the restaurant of my dreams and I started getting excited.

Right around this exact moment, my phone rang.

I answered.

It was the school.

Apparently, the kid that just was at home playing dress-up and dancing, got there and decided that she's start "throwing up everywhere."

The lady said it just like that: everywhere.

Poor BD. He tried so hard.

He busted a u-turn and ten minutes later, we pulled up at the school.

Playette was inside the room, on a cot, looking pitiful.

I thought about asking for our money back, but it seemed in poor taste since they had just cleaned up my child's puke and all.

I know. I need help.

So, back home we went. Playette seemed ok for the most part. A little tired, maybe.

Perhaps they exaggerated. She couldn't have possibly just been throwing up everywhere. She was fiiiine.

BD and I agreed to a place for takeout, put Playette to sleep on the floor in the office, and I relaxed to read a few more pages of PNT article comments.

It was making out to be one rocking Friday night, y'all.

And then I heard it.

A cough?

Another one?

Let me go check.

You know what I found, right?

Puke. Everywhere.

My poor baby.

That went on for a while.

Her eyes kept rolling back in her head and she would slip in and out of sleep. It was a mess.

BD finally came back with the food.

I had lost my appetite by then.

And, inside my head, I was freaking out about how I would have handled this sitch with another little one also needing me. EEK!

BD let me pull the pregnant lady card and I went up to bed while he stayed downstairs and woke up every hour or so with El Sicko.

It was pretty gross.

But he tried to give me the night out I wanted.

And I love him for it.

Potpourri

My brain is a hodge-podge spiral of everything lately.

I create posts in my head that never get written.

And, seriously, what else is new?

I want to talk about pre-natal testing (PNT). Whew, that's a biggie. I've been reading an article lately. In itself, it's not long. It's the 190 comments that are taking time to rifle through. And there are some doozies in there. Some make me gag because they're just so over-the-top syrupy and others make me fear for my life in this country and wonder if the author is my neighbor or co-worker. You can read for yourself here.

The article was published back in September, but I only just now learned about it for a reason that I will discuss sooner than later. I just need time to get my long list of thoughts together. I figure that people have wondered about my position on PNT, especially now that my pregnancy is common knowledge, but they're too polite to ask. Which is cool. So I'll just tell.

In a similar vein, I had an appointment with, as my friend likes to call it, my "nurse collective" last week. I am officially 3/5 of the way through my pregnancy and the baby appears to be doing well. He moves a lot and he has a great sounding heartbeat. I feel pretty good for the most part and if I could just get motivated to find a support group like "Pregnancy after Weight Loss" I might be able to wrap my brain around this whole upward motion of the scale thing. Trust me, I know it's a necessary part of the process, but I still sigh at every weigh-in. I need to get over it.

At my appointment, unfortunately, I also had to deal with a question about Playette that made me think. It brought up the whole "educate or get pissed or both?" feelings again. I swear, as more time goes by, this isn't as clear cut as it used to be. At least I'm not so quick to cry anymore.

There's also work stuff that is out of control. Like, really. They have gone straight nutty on me. I know I mentioned it briefly back in August/September, but because I wasn't ready to talk about the babe yet, I didn't get into details about why what happened really sucked as much as it did. Suffice it to say that coming back was not what I anticipated.

I've got reserve duty coming up (which caused more drama at work) and I am already thinking of how much I'm going to miss Playette and vice versa. My girl really tugs at my heartstrings lately and every choice I make seems to impact her to the core. I hope she doesn't hate me when I get back. The one good thing that will come of this is my getting to wear what I fondly refer to as "The Khaki Tent" again. Not only will I get more of my money's worth out of this rarely-worn gem, but it's super-comfy. So, yay for that.

Also, I want to touch on infertility. That's not something I've ever talked about openly. But it's real. And that makes me even more grateful for what's currently going on with my body.

I hope you're all enjoying a wonderful holiday season. If you have any specific questions, please either post here or email me and I'll add it to the lot.

We'll be celebrating in a unique way this year and I look forward to telling you more about that, too.

Soon...very soon.

Anything in particular that you want to hear about first? Majority rules.

Monday, December 12, 2011

Bandwagoner

Yesterday, we cut through a market on our way to meet some friends for breakfast.

Playette stopped as we were passing a booth where two ladies were selling fancy, assorted nuts.

She signed "football."

I was confused and turned to BD for help. To what could she possibly be referring?

I looked back at her expectantly.

Again, she signed and said "football."

And then I saw it.

The ladies were obviously fans of the currently undefeated Green Bay Packers.

How could I tell?

This was displayed on the side wall of their booth:


It wasn't even very big. Like, really, it took us a while to notice.

So I guess Playette's a fan?

I guess the real question is: Was she a fan before they were playing so well?

It's totally possible that she got sucked in while we were in Wisconsin last year. The Packers are serious business there.

In all seriousness, this kid continues to amaze me, y'all. The connections she makes...it just lets me know that there's so much potential in that brain of hers. We just have to tap into it.

Saturday, December 3, 2011

Outtakes

If you liked the shots taken by Pretend Jen for our participation in the NDSS Signature Tee fundraiser, perhaps you'll enjoy these as well. If that link doesn't work for you, try this one.

Again, we had a ball and are so grateful for having had the opportunity to play for a great cause.

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I feel like I have so much to say in order to fill you in on what I've been so quiet about these last few many months.

I will!

But first, there is a party with free food calling my name.

I'm a sucker for free food, yo.

And, of course, the kid should have fun.

Maybe I should have written that first? That's what a better mom would have done, right?

HAHAHAHAHA! And now I'm gonna have two! Watch out, fellow MotY nominees.

Thursday, December 1, 2011

It's Time!

What time is it, you ask?

It's t-shirt time!

You've been waiting so patiently for me to dish on what we were up to at the beach and this is it:

NDSS Signature T-shirts Are Here!

We are proud to unveil a collection of men’s, women’s and kids’ t-shirts featuring 3:21 on the front and the NDSS logo on the back.

Adult shirts are $25 each and kids’ shirts are $15 each. For each signature shirt purchased, $5 will be donated to NDSS.

Men:
Guys will love the fit and feel of this t-shirt, made from 100% cotton with anti-pilling finish. It is so comfortable it will become an instant favorite, and its subtle message will make you feel good about wearing it as often as you wear your favorite jeans (okay, maybe not that often).

Women:
The quality and fit of this t-shirt will make it the one that spends more time outside your drawer than in it, and will help you spread the word that people with Down syndrome are valued and loved members of our society. This flattering style and color options suit all sizes and skin tones and is made from 95% cotton, 5% lycra with an anti-pilling finish.

Kids:
Whether they're learning to tell time or setting their own alarm clocks, kids will love knowing the 'secret' meaning behind 3:21 and will enjoy being the one to share this info with their friends. It's always the right time to learn to accept and include someone with Down syndrome. These t-shirts are made from 100% cotton with anti-pilling finish.

Rhyme & Reason clothing can only be purchased online. Standard shipping time is 3-5 business days. Customers can use the code NDSS25 to receive 25% off their purchase and free shipping from now until the end of the year and 10% of the purchase will be donated to NDSS – this applies to any item other than NDSS signature t-shirts.

Click here to visit the Rhyme & Reason website (and see the cutest little model EVAH).

Click here to view photos of the NDSS Signature t-shirts on Facebook (if you can't see them, "like" the National Down Syndrome Society page).

And here's the newsletter, featuring another little surprise quite prominently.

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It's been super fun participating in this project and I'm so proud that we were able to help NDSS, in our small way, to raise awareness.

Plus, I got to tell you something awesome in a really unique manner.

If you missed it, GO CLICKY-CLICKY THE LINKS!

And, please, if you like the shirts, buy them! I absolutely love ours.

Thanks for playing, y'all. :)

Wednesday, November 30, 2011

C'mon now. Really?!

For me, a trip to the ER has become a little too commonplace.

Because it had been a while, we went ahead and visited on Saturday.

It was the strangest thing, really. I was in the bed, lounging, reading my Twitter feed and a few friends were discussing [something pretty damn gross].

"Hm. I've had that happen before. It is no bueno," I thought to myself.

And then, I turned over to my side, coughed, and [that same something happened].

*sigh*

So I called BD to show him the proof and he was all "ewwww" and suggested that I contact a medical professional.

I made the call, got the answering service, explained my situation, and waited on a call back.

And, because I'm that kind of person, I decided that before we did anything, we needed to go to Costco.

Because I'd be fired up if I ended up admitted and couldn't use my coupon.

Turns out that the advice I got was to go to someone's urgent-type facility, so after I did what I wanted (I know, I know), we went to the hospital. It actually made more sense to go there than somewhere else based on my insurance coverage, plus I knew that if I needed tests, I'd already be in the right place.

Thankfully, traffic was light in there during that time, so we were in and out in a relatively quick 2+ hours. Playette enjoyed the time outside with her dad after I had to kick her out of my room for touching everything and just plain being four years old and I played with my phone in between repeating my same story to every person that walked into the room (what's the point of them taking notes, anyway?).

A chest x-ray later, it was revealed that I, thankfully, do not have pneumonia again some more, so I was released on my own recognizance.

We celebrated with lunch at a new-to-us place and then went home to football for them and a nap for me.

Exciting, huh?

We are some serious party animals over here, y'all.

After that, things were pretty tame for the rest of the weekend. BD put up the tree, I rested and addressed envelopes, Playette did her silly little thing as she is prone to do.

I just realized today that we are sooo booked for the next six weeks or so. Going here, running there, parties, family time. And I just found out that I have reserve duty in January. I'm excited for what I'll be doing, but bummed to have to leave my peeps behind. I know first-hand how Playette gets when BD leaves and the thought of her missing me that badly just makes my icy heart crumble a little around the edges. Poor little boobah.

Or she could just be thrilled to have me gone. Who knows.

Oh, and I know I've kept you all dangling for deets. It won't be long now. Promise!

Maybe I should put a Neicy Nash flower in my hair for Reveal Day.

Thursday, November 24, 2011

What I Like

What I like about this Thanksgiving is that my little fam is all together.

Sure, BD is at work right now, but he'll be home soon and, hopefully, phone calls of things going haywire will be kept to a minimum.

Last year, he was on a ship on the other side of the world while Playette and I spent the day sightseeing in San Francisco. He never even got the chance to have dinner since he was on watch and we (well, I) decided to forgo anything that resembled the traditional holiday festivities on that day (we did dine with friends the week prior) for fear of getting all sad and not focusing on what we did have. That can be tough, y'know? We're a unit over here and when that unit gets disturbed, it takes a bit of a toll.

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Hey. I don't think I ever posted any of those pics. I was a little overwhelmed last November. Wanna see some?

We stayed at the Marine Corps Memorial Hotel downtown. Great hotel, great location (the happy hour and breakfast buffet are a nice touch, too). Playette liked the mascot statue in the lobby.


We dined that night on yummy Italian fare. I think we split a plate of gnocchi.


In the morning, we went to Pier 39 where we took a boat tour around the bay.





I remember that I had to make the decision to put my camera away after the tour because crowds + squirmy, inquisitive kid + 1 adult meant something had to give. We did end up going on the carousel though. And also some movie thing. It wasn't a long deal, so maybe a 3D/4D suck-the-money-out-of-a-parent's-pocket feature? I can't recall. She did sit through the whole thing though. I was really happy about that.

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So I'm excited that today BD gets to eat and eat until his heart is content. We don't even have to cook or travel far, so that makes it even better.

My co-worker/friend has invited us to her house and she already has most of my donations. All that's left for me to bring is the carrot cake I made last night, some whipped cream for the pies, and my tupperware.

Because you know I'm bringing stuff home to nosh on, right?

The menu we planned includes things like two fried turkeys, ham, mac and cheese, dressing (I call it stuffing even though it's in a pan and not a bird, but we've agreed to disagree), greens, sweet potatoes (she swears by the kind from Honeybaked Ham so that's what I bought instead of making my own; we'll see), rolls, and...ok, I know there are sweet potato pies and my cake for dessert as well as a million other things, but I'm drawing a blank. It's too much food though, trust.

Oh! I did contribute cans of cranberry sauce, too. Because this girl here? Likes to cut the jelly along the ridge lines. I will never not like to do that. Fancy homemade stuff is fine and all, but I needs me some ridge-lined jelly.

I spent some time yesterday brainstorming on holiday card ideas. For a sorta-Scrooge, I am way into that and I can't even explain why.

We have lots going on for the next month. Good stuff to wrap up the year quite nicely. I even have a dress to go with those sparkly shoes and I can't wait to put them on together to ring in the new year while celebrating the nuptials of a good friend. Yay for parties and glitter and new beginnings!

I'm looking forward to today. And many tomorrows.

I hope that you are, too.

And please hope along with me that today is NOT the day that my cake decides to suck. Does anyone else get nervous like that when bringing food to someone else's house?

Sunday, November 20, 2011

Lovely Day

This song has been stuck in my head lately. A version (not sure who sings it) comes on Playette's favorite radio station and I love that I knew some of the words right away and can sing along to it with her. She loves it when I do that.

Despite my lack of sleep and a list of things that still needed to be done no matter how crappy I felt, I have to admit that today was a lovely one.

Playette got up at 3am. Why? I have no idea. I assumed that she didn't know either so after giving her a potty break, I put her back in the bed. I figured that we could pick up our little convo once the sun came up and, thankfully, she agreed and didn't start yelling for me again for about 3.5 more hours.

For some strange reason, we got temps in the upper 70s today, along with sunshine. Since I needed to fulfill a promise to head to the beach with the fam (seriously, in the way of promises, that's a good one), to the beach we went, along with our faithful helper, "Pretend" Jen.

Playette has been asking and asking for the beach since the time had long passed to take a dip in the water, so she was very happy just to be there and have the opportunity to play in the sand in her jeans and tee shirt. I wish we could have stayed longer, but there was a birthday party to attend for one of Playette's school friends. Apparently, she had a ball. Being that I am currently hosting a myriad of germs, I wasn't able to make it. Boo.

I can't wait to show you all what we were doing at the beach though. Really. I'm excited!

But...I need just a little more time to get it all together.

So, please, bear with me and all will be revealed.

I hope everyone is getting in the spirit of the upcoming holiday in the US.

Can I just say that I CAN'T WAIT TO EAT?!

Seriously. The food. Bring it.

Friday, November 18, 2011

What had happened was...

Remember how I was all excited last week to meet the ST that, like, totally had the potential to be my lifesaver?

And we were going to go there after a trip to the dentist?

Well...

We didn't quite get that all done in the manner I was expecting.

And now here it is seven days later and I'm just getting the breathing space to talk about it.

First, let me say this: BD was gone. Again. He had to go back to Norway for close to two weeks. I whined almost the entire time because I was EXHAUSTED and I wanted him HOME and all of the sudden none of the jars in the house would open and there were bugs that needed killing and I wanted to grill things but I don't trust myself with propane (no, really) and blah blah blah, oh pooh.

It's amazing how independent I was before I got married and now? Hmph.

Anyyyyway.

The dentist trip started out ok.

Until I got in the car.

Because that's when I realized that were weren't going where I thought we were going and now we'd surely be late because I hadn't planned on driving that far away. Ugh.

Eventually we got there. Late. And...it just wasn't my type of scene. There were these huge, unsupervised children - pre-teens? - on the play structure meant for children 4' tall and under, which of course my child wanted to play on even if that meant she would be trampled. There was yelling and screeching and...just when were they going to call us up, anyway?

The answer to that would be "five minutes from never."

We waited for over an hour. During that time, I saw a little boy finish seeing the dentist only to come out to the waiting room to no parent or guardian waiting for him. Regardless of the many signs posted NOT TO LEAVE YOUR KIDS.

Maybe one more sign would have helped.

When we finally did go back, Playette did fantastic. I was way more impressed with her performance than that of the staff. Zero patience for that crap, I have.

We happily left not knowing anymore about her mouth issues than we did when we came in and then yesterday? At this feeding specialist appointment we went to? Guess what they told us to do? GO TO THE DENTIST.

BWAHAHAHAHAHAHAHA!

Insurance is going to laugh in my face.

"Yeah, I know she just went, but now can we go see a good one?"

And that's when things started going downhill.

After the crappy trip to the crappy dentist, I mean.

Playette seemed fine at first, but then the vomiting began.

First, on the beautiful Middle Eastern rug, then on herself, on the carpet, all over me, on blankets, on towels.

It was awesome.

(Needless to say, we had to cancel ST. womp, womp)

This kid never gets sick so when it does happen, I'm totally caught off-guard. I did my best to channel my great-grandmother and just keep pressing, thinking of how she'd call me a wimp since I only had one kid to take care of, didn't have to pick cotton or tobacco, have indoor plumbing, and (gasp!) there's a machine that washes all the pukey laundry for me. I mean, really.

I figured that if I just kept moving that I'd be ok, so that's what I did.

Somehow we made it to Saturday.

Saturday, there was no puking, but the scary high fevers and lethargy started. I think we watched a lot of TV that day.

I thought everything was done on Sunday. And then Monday happened.

But! BD was home by then, so at least there was backup.

He stayed home with her on Monday and they got some good bonding time in. By the time I got home though, she had a crazy rash on her face and nose (BD: "Didn't she look like that yesterday?") and she was pulling on her ear, saying "Oweeee."

Now, this is "funny."

Nary a week before, I was telling her Ped about how my kid had never had an ear infection and she was all, "Really?!" and I was all, "Really," as I popped my imaginary MomCollar.

So to teach me a lesson, the Ped totally gave Playette an ear infection and called it a flu shot.

Totally plausible, right?

So there we were, six days later, with Rashface McGhee, pulling on her ear, and I called that Ped's office right back. "Y'all are open until 8, right?"

"Yes, but we're all booked up tonight. Please hold for the Triage Nurse."

I turned to BD and begged for him to handle it.

I don't know about your situation, but when BD deals with the Ped's office, things always get done. They are sooo nice to him, wherever we are. The same thing was true when we lived in CA.

They ended up telling him the same thing, but then an hour later, miraculously, there was a cancellation so off they went. The front desk ladies are nice and all, but they would never have called me back with that revelation. Never.

Verdict: double ear infection

Playette and BD and Amoxicillin stayed home together again on Tuesday.

Oh, and somewhere in there, the truck started smoking and scaring the crap out of me while I was driving home from work. Like a doof, I screamed while driving it all the way to our driveway, where I jumped out like it was about to blow and ran to the front door, panting and wondering if maybe I shouldn't have parked it so close to the house because it was going to up in flames any minute.

Wait. Now I remember. That was also Monday.

The truck went in the shop on Tuesday and we got a rental car.

I'm pretty sure that repairs were $8 million, but I refuse to confirm with BD because I will break out in hives.

Yesterday, I took off work to take Playette to that feeding specialist I mentioned earlier and then I had an appointment of my own in the afternoon.

To celebrate making it through all of that, yesterday afternoon, I bought totally impractical, really sparkly girly-girl shoes.


(Photos do them no justice.)

And I'm not even a girly-girl.

Ask me if I care.

Thursday, November 10, 2011

S'up, Y'all?

I honestly didn’t mean to just straight disappear for the most part after the end of October, but the last couple of weeks have been some doozies in our household. There’s just a lot going on and I’ve barely had the thought to blog, let alone carved out the time to actually do so.

Work is very busy. Well, sort of. I mean, there’s lots to do and way more confusion than I would like, but…eh, it’s complicated. I’ve had to take off a couple of sick days lately. One day last week for me, one this week for Playette, and then another will be next week for Playette in the morning (She’s slated to see some fancy feeding/swallowing doctor – not a therapist. Don’t worry, I’m confused, too.) and I have an appointment of my own in the afternoon. Best bet was to take the whole day even though I know that will be one hectic day between going to the city, back home to drop her off, and back into the city again. Yeesh!

Tomorrow is a holiday for us, so yay for a day off of work, but since Playette also doesn’t have school, we’re going to try to make the most of it by squeezing in a much-needed dentist appointment (pray for me) and then, in the afternoon, I get to take her to her new SLP. She’s had two appointments so far, but since they’re at 3pm, the sitter has been taking her. I’m glad to have the opportunity to finally meet this woman who is, to me, the representation of all of my dreams of the past year finally coming true.

See, we had out eval with Sara Rosenfeld-Johnson last November, I believe, and during that process, we got connected with a Talk Tools certified SLP that we were able to see twice before we moved. Even then, we had to drive over an hour to get to her because there was just NO ONE closer and I believed with my whole heart that Talk Tools was the way to go for Playette. I liked the SLP a lot and we tried to make an adventure out of it so that the early morning drives didn’t feel so daunting. As you all may recall, we then had the audacity to MOVE at the end of December once BD returned from his deployment, so that marked the end of Speech Therapy for a very, very long while.

Which sucks.

Because what is my daughter’s greatest challenge (well, besides using scissors which is the current bane of my flipping existence)? SPEECH.

When she started school in January, she did get some time with the ST there. But then, y’know, we took her out of that awful place in April after the teacher used the R word in the IEP meeting AND the bus drivers played that precious April Fools practical joke. Such a shame to leave such sweet folks, but I digress.

So, the little bit of ST she was getting disappeared. I was so torn up at the time about what was going on between us and the school district that I didn’t pursue their services at her private preschool. Plus, I just KNEW that we’d be coming up on one of the many, many waiting lists we were on for ST…any. day. now.

Ha! So much for that. If you are the parent of a child with special needs, you have probably noticed that there are a lot of children out in the world with “speech delays.” It’s a pretty common diagnosis. So, getting in to see an SLP, especially one with experience dealing with oral motor issues, not to mention the added bonus of being familiar with or certified to utilize Talk Tools? In a very congested area? Yeah…waiting lists. Long, long, long waiting lists. I made more phone calls than I can even recall, trying to track down someone, anyone, that could work with my girl.

Thankfully, we were so grateful to have Beth come by this past summer (housecall, woot!) to help me learn how not to be so overwhelmed by the whole oral motor process. She is a wealth of information and I am inspired so much by how well her daughter, Hannah, is doing, along with her other children. I hope I can be half the mama she is one day.

To bring you up to speed on this new SLP we have, about a month ago, she called me out of the blue and said that Playette had come up on her waiting list. I was shocked. She went on to tell me that she’s Talk Tools certified. I was stunned. The issues then became dealing with insurance (gag) and the logistics - her only openings were on days/times we were otherwise obligated, plus her office was REALLY far away.

Over the course of a couple of weeks, we got it all worked out. The insurance thing made me want to stab my eyes with a spork, but eventually that was rectified. And then, this woman offered to do some shuffling and got us in not only at a time where we could make it, but also at a closer office! Where has she been all my life?! Or at least for the past 10 months?! So, once I coordinated with the sitter, we were set. Yeehaw. Get along, little doggie. Forward momentum. All that good stuff.

So far, Playette has been twice and things are going well. I’m actually excited to meet this life-saver of mine tomorrow and see what she has to say about possible next steps. As it stands, I still have a massive drooler on my hands (and, yikes, winter is approaching and wet + cold = ugh), and you know that noise I mentioned that started last year? It STILL has not made a graceful exit yet.

And if you think that over time that it would just blend into the background? You, dear reader, would be incorrect. It’s just as grating as it was the first day she started. More so, in fact. More. So.

I felt like I wanted to write more than just about this topic, but my brain is all loopy at the moment. When it comes to me, I’ll be back. Promise.

Friday, November 4, 2011

Loves It

More on Jamie and DeOndra

Monday, October 31, 2011

And Now, Some Words from Our Sponsor

My turn again. BD dropping in for his once a year check in. The one day of the year you have to deal with my poor English and pitiful writing skills. We’ve had one interesting year.

How time flies. This time last year I was sitting on an aircraft carrier listening to airplanes crash land on top of my head. I was off “saving the world”. It’s my job or something. My job also called for us to completely uproot ourselves and try out some new scenery to call home.

As fun and exciting as traveling around the other side of the world is, being away from the Momma and Playette always makes me sad. I know they don’t see it that way, but these 2 ladies are my world. I’ve been on deployments away from the US before, but this was the first time I had to do it since these ladies came along. It is a much different experience trying to be a husband and father from the other side of the world, with little to no internet and extreme conditions on every day. Just getting to talk to them for a few minutes every couple of days was great motivation to keep going over the entire stretch.

I was very impressed with how my wife managed to hold it all together while I was gone and then again as we moved. Having to be a single parent on random notice for weeks to months at a time is an extremely hard lifestyle that the majority of people aren’t capable of. The fact that she’s committed to doing it for the benefit of my career just shows how awesome a woman she is. I’m very lucky to have her! Love you babe!

The little one continues to grow and impress. She’s amazing to watch and an extremely cool kid to just hang with. She’s my partner in crime and every minute we hang together is just the best thing on earth.

Going away is never easy, but as they say distance makes the heart grow fonder, and that has definitely been true this year.

Every time I come home to them I realize there is nothing better than their love.

BD Signing out. See you next year peeps.

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2008
2009
2010

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Sunday, October 30, 2011

More About Yesterday

So, as I was saying before we had to pack up and head home, I didn't get much sleep Friday night. I did see lots of Law & Order though.

Thankfully, the wedding wasn't until 2pm, so we could move slow and take our time getting ready.

The weather was not too friendly though. Saturday was pretty nasty all up and down the east coast. Not to be deterred, BD and I made our way through the wintry mix to a local diner and indulged in lots of wonderful breakfast-ness.

Oh! That reminds me. Before all the hotel drama on Friday, we did get the chance to try a pretty nice Japanese restaurant. For dessert, we indulged in an order of Oreo Cheesecake Spring Rolls. If that kind of thing sounds good to you? It was just as you imagine. Yum!

We arrived to the wedding just fine and the ceremony was quite nice. My friend looked amazing and so very happy. I almost teared up a little.

The reception was a total party and our table was the party within a party. I've never seen anyone get kicked out of a wedding for having too much fun, but if that were ever to happen, I think it would have occurred at Table 11.

And then the music started. The bride is Liberian so we all enjoyed participating in the lively traditions. I was jealous that I'm not Liberian, too!

Table 11 represented well on the dance floor. Out of the 10 of us that sat there, 8 of us were responsible for shutting the place down. Really. At the end, it was the DJ packing up his equipment, the bartenders cleaning up, the coordinator wrapping up final details...and us.

So, yeah. A well-utilized night out. We made 8pm feel like 2am.

Bonus: I'm a huge fan of The Amazing Race and one of the former contestants is a friend/co-worker of the bride. She not only sat at our table, but her date to the shindig was none other than her partner from the race! How cool was that? Uh, very. They were part of the Elite 8, too. They could hang. Loved it.

This morning, I woke up early and BD went downstairs and grabbed us some to-go breakfast that we enjoyed in bed before making our move to come back home. It was a long ride back, but the weather had totally cleared up, so it was smooth.

Playette was glad to see us, but moments after we got home, she was already asking for "Pillow." Poor girl. She's not going to be happy until both families are living in a split level or a commune or something.

I'm glad that she had such a good time though. Being a transient family, it's nice to meet people that you can trust with your kid when you really need help in a pinch. We're so very grateful.

Yesterday

So. Well. Yesterday.

I was planning to just come and post something so that I wouldn't feel bad for missing a day, but that didn't happen. It completely slipped my mind before things got crazy and then after? I passed out from exhaustion.

BD and I got some alone time this weekend thanks to a great friend who offered to keep Playette for us. That friend is her bestie's ("Pillow") mom, so little miss was all too thrilled to get some extended time with them. To date, they've gone pottery painting, fine dining (CFA, woot!), attended the Ds group's Halloween party for kids (she won the costume contest!), watched movies, hung out with more friends, and, I'm guessing, tormented the crap out of his mom. Bless her heart. And her sanity.

Meanwhile, over here, we checked into a nice hotel and eventually realized why we scored such an elaborate suite for such a non-elaborate price. Turns out they were in the process of re-surfacing the floors of the parking garage.

Ok, fine. No biggie, right?

Except that by doing so, they filled the place with toxic (?), potent fumes. I guess they tried to keep us from being bothered by putting us in a very high room, far away from the elevator (which was bringing the smell to every floor), but no.

I don't do so well with weird smells and things that trigger my respiratory issues, as you may recall.

So, first, we asked for something, ANYTHING, that could possibly help. Candles? Air freshener? Plug-ins?

Someone came in a sprayed some crap, but then it smelled like flowery toxic crap. I tried to focus on the flowery and went to sleep.

Four hours later (at 2am), I was up again. The smell had tapped me on my shoulder and said, "Geeettt ooouuttt."

My mama didn't raise no fool, so after asking the front desk (at 3am - see? I really did try to tough it out) for an alternative, I called another hotel to check availability. I figured that while moving would suck, at least we didn't have to be up early.

We didn't hear back from our front desk guy for a while, so we started to pack up.

Some time later, we still hadn't heard from him, so we left.

When we got downstairs (soooo much worse down there), he said that he had just tried to call us. His solution? Send us elsewhere at their expense.

Wow. I thought customer service was dead?

Apparently, it still kinda is because he said that everything took so long because he called his manager for approval and she said she'd call him back after she got off the phone with her mom. And she never did.

Ooooook.

He's probably going to get fired for helping us. Ugh.

So we moved. We had a view of the HVAC system instead of the city skyline, the tiniest bathroom ever, only one tv, and no living room. I mean, really. How would we make it? @@

But I could breathe. So, yay!

What I couldn't do was go back to sleep, so I indulged in four episodes of L&O while BD snored away.

Consider this Part I of our tale. I'll share the rest later today after we get some things done.

Friday, October 28, 2011

Giving #47 the Side Eye

Dear Extra Chromo,

I go back and forth regarding how I feel about you. In some ways, I do believe that you help my daughter to be the very person I adore and if you were taken away, would she be that same person? If I had that choice to make, would I?

In the past, I’ve always said that I would, if I could. I don’t think that’s changed for me, really. The decision’s just more complicated by the good things that come along with this new community that I was ushered into over four years ago unaware. There are lots of wonderful things I like about that.

I love the people I’ve met, the places I’ve visited, the things I’ve learned.

I appreciate my increased level of patience and compassion. I look people that are different in the eye. I say “hello.” I understand their value in this world.

I enjoy celebrating the accomplishments of not only my child, but the children of others who also have similar unique needs because I now understand what level of determination, passion, and commitment it takes for them to reach that milestone.

And sometimes, just sometimes, I crave the fire that the fight for my daughter’s basic rights brings to my being. It makes me feel alive and purposeful.

But.

Then I think about how you stripped away the joy that others speak of when they first held their child after it was born. That “love unlike any other” feeling? I didn’t have that. I was afraid. I was sad. I was completely and utterly devastated by the unknown. You did that.

I think about how people look at my daughter and feel pity before ever giving her the chance to show who she is and what amazing things she can do. They lump her into categories reserved for what they believe to true about all people with Down syndrome. No wait: “Downs kids.” You did that.

I worry and have sleepless nights, scared of what might happen if she stays so friendly and continues to never meet a stranger. People prey on such things. You did that.

I want her to succeed academically, but then think that, if she does, and she’s fully included that she’ll only be patronized and not truly be accepted as a peer. You did that.

I can’t stand in line at a restaurant on family night without someone feeling like they have the right to come up and tell me that my child, who they have never met, “…might read one day. Just not at the level of a normal child,” all the while making sure to remind me not to keep my expectations too high because some parents are uppity like that and think their kids are higher functioning than they really are.

The features that revealed my baby’s inner struggles and opened up the door to insensitivity and presumptuousness are thanks to you.

The fear, the guilt, the pain. Sure, maybe I would feel that in some instances had my child been born like the other 690.

All parents wonder. All parents feel like they can do more. At one point or another, we think we’ve failed and are grateful for second, third, fourth and many more chances.

But some days I just have to think that it’s more for me because of you.

That’s why I don’t like you.

That’s why I’d let you go if I could.

But I can’t. I know that. And I deal. And I’m probably a lot stronger for it than I realize.

I do the best I can and I don’t dwell on the “why?” anymore.

I’ve passed the phase of trying to answer the question of “How dare you make an appearance in my life after all of the things I’ve been through?!”

I understand that we are a part of the “why not?” club.

The only criteria for membership is you.

I’m sure we’ll struggle, you and I, over the years. Many days, I’ll accept you wholeheartedly, not caring at all that you exist.

And then one day, out of the blue, you’ll sneak up on me, tapping my shoulder with an aggressive reminder of all that is different, all that is more difficult, because you exist.

I hate to give you so much attention. Really, I do. It probably makes me look weak and puts you in the position of appearing more powerful in my life than you really are.

But I’m confrontational like that. If I didn’t tell you, you’d never know.

I love my kid.

I’ve got my eye on you,

Thursday, October 27, 2011

Gracious

When I was in college, there were a lot of rules. Especially the first year.

Meals during that time were quite interesting. Sit on only the edge of the chair, six inches in. Stare at the top of the plate. Request everything in a specific way. Have the menu memorized. Serve the upperclassmen. Don't speak unless you're utilizing the aforementioned request sequence.

It's been (ahem) several years and all of this seems like yesterday.

There was one other thing I remember vividly about lunches during Plebe year: grace.

Yup, the blessing of the food.

Because, in the midst of all this seriousness, we said grace.

Well, actually someone said it for us.

The Regimental Commander was quite the intimidating figure back then (as adults, we became friendly and I couldn't have been more proud when he was selected as a White House Fellow several years ago). He was tall and had a deep voice with an amazing accent that revealed his Haitian heritage.

He pretty much scared the crap out of me. But that's what he was supposed to do.

And everyday he would literally say grace. I found it hilarious. He yelled out so that every student in the dining hall could hear him, "GRACE! SEATS! Eat."

Never before had I considered saying grace as, you know, saying "grace."

I recount that story because not since then had I tittered at the blessing of food until Playette came along. She gets so much satisfaction out of it. She reaches out both hands to us (she sits at the head of the table and we're on either side), says whoknowswhat (hopefully, she's not praying that we'll choke on our Brussels sprouts) and then gives all of our connected appendages two pumps to the tune of "Ayyyy-Men."

We never know if this routine will occur before we eat or right in the midst of a mouthful.

And if that wasn't enough, she recently has acquired the habit of ceremoniously licking every finger before she reaches her hand out to be held. Usually it's on my side. Today BD got wet willied, too. It's so frickin' gross.

But I laugh every time.

Love her.

Wednesday, October 26, 2011

Three Things

1. Tricia was so kind as to share this video with me of Jamie Foxx and his sister, Diondra, (as well as others) at the Global Down Syndrome Foundation's Be Beautiful Be Yourself Fashion Show and fundraiser. How much would I have loved to have been there? A freakin' lot.

2. Gymnastics was slightly less awesome tonight as my child had a totally random and very rare accident of the #1 variety and then decided to top that feat moments later by spitting up some of her spaghetti dinner. At one point, she was walking around in a borrowed pull-up and a jacket because I didn't have any backup clothes because I'm cocky like that. Mom of the Year, ladies and gentlemen! Here I am. Right here.

3. Things went fine with my friend and the young man with Ds. I guess I didn't totally ruin everything, but my info didn't really end up coming into play this time. I was assured that he'd keep everything I shared in mind should the situation ever come up again. I hope you all can understand that I don't want to violate his trust by sharing any additional details. I just thought it was really cool that he asked me and found it heartwarming that all this advocacy is not always in vain.

Sometimes, it feels like I'm always talking to people that already know and understand everything I'm sharing, which is great because I totally need the support and validation, but...I also feel good knowing that people that don't have personal experience with Ds, especially people I haven't seen in many years, can get something from this as well.

Tuesday, October 25, 2011

Ok, fine...

So maybe social networking is not totally evil. At least not all of the time.

Today, I received a message on the Book of Faces from a friend from college. He asked me my opinion regarding how he might handle a specific situation with a person with Ds in his professional life.

I couldn't have been more thrilled.

Seriously. I love answering questions.

Now, I don't think I'm the end all-be all when it comes to Ds. I don't know everything about everyone with 47 chromos, by far. But, I swear, it's nice to be asked. He didn't have to do that. It was respectful and genuine and that's the most I can ever ask for.

I took the time to think through my response, not wanting to do either him or the person with Ds a disservice. I thought about different scenarios. I weighed one possible situation versus another. And then I thought some more. And googled.

I probably gave him way too much information.

And when I finally sent what I had come up with, he responded. He told me that what I told him was pretty much in line with what he was thinking and that I gave him a few additional tips that may prove helpful.

I still can't help but think that I totally screwed that up because I am a pessimist at the core of my icy heart, but hopefully it all went fine.

I have to admit, if it weren't for FB or this blog, we may not have ever had that exchange.

So, fine. I give one up to the wide, wide world of web.

*shaking my fist ominously at the sky*

And now? There are some kids on my lawn that I need to go yell at.

Monday, October 24, 2011

In My Head

This is the first year that I can recall not being all stressed about trying to fulfill my 31-for-21 obligation to post every day in October. I think that may be because I'm not trying to make it all about Ds this year. And that's easier for me to do now because, as time has passed, that's become more of a side item in our dinner or life instead of the main course.

Ok, that was a little goofy, but you know what I mean.

There was a point where my life was all Ds, all the time. And not in a good way.

It was more like an overwhelmed, really sad, looking for a light at the end of the tunnel kind of way.

And I have to say, while our lives are now filled with more people and families that identify with Ds than ever before, it doesn't feel like too much.

It feels just right.

I love my friends with no children. I love my friends with typically developing children. I love my friends with children that came with a little something extra.

It's made my life rich, I think. I can't say "richer" for sure, because who can say, but rich fits just fine.

I like knowing that I'm not the only one wondering about Kindergarten placement.

I like being able to laugh at things our kids do only the way that parents who are "in the know" can.

I like answering questions from people that are asking because they care and really want to know what I think.

I like seeing my kid treated exactly like the others in the room, whether that's being fed, bathed, read to, or disciplined.

I like knowing, really knowing, that my child will never be left alone, even if I'm not here. She'll have someone.

That's really all that's on my mind tonight.

We had a regular day, doing regular things.

I don't feel particularly funny or eloquent or strongly about any singular topic tonight.

And that's totally working for me.

=====

If y'all want me to expound on anything, speak up, 'k?

Before you know it, I'll be back in my weekly posting rabbit hole.

Sunday, October 23, 2011

Giving In

I was going to wait to share Playette's costume until later in the week, but then I saw this photo that was taken yesterday at the festival we attended.

Resistance was futile.

She's too stinkin' cute to keep secret.

Check out our little peacock/butterfly.



Saturday, October 22, 2011

Sneak Peek

We took Playette to a party today. It was free to military families and gave us an excuse to try out her costume, so we indulged.

It didn't end up being as fun as the flier indicated, but it wasn't awful and we got some nice family time in. I figure that's better than passing out on the couch while watching crap on TiVo/college football, which mayyy be what we might do most fall Saturdays.

I'll never tell.

I freaking love her costume. Love, love, love. I claimed it last year after a friend had it on her daughter. We're no strangers to going green with the costumes. A couple of years ago, that same friend passed the insanely cute Nemo on to us and then we paid it forward to another friend. This year's costume already has a home for next year and I think that's great. Too bad women don't share wedding dresses the same way. Imagine all the money saved!

I love saving money. I will talk to anyone anytime about saving money. Trust.

Anyway, here's your peek. More to come as the big day approaches.

Hint: She thinks she's a butterfly. She's not.



Friday, October 21, 2011

Girls' Night In

BD went out to hang with some work folks tonight, so it was just me and the Littlest.

She ate spaghetti and then tossed some of it back up on the office carpet.

Good times, good times.

Thankfully, it got better after that.

There was some Dora watching and then I convinced her that a movie would be a good idea. She relented and after donning her pjs, we finally snuggled in on the couch and watched Tangled.

First magical thing of the night: She stayed awake the entire time, paid attention, and seemed to love it.

Second magical thing of the night: While walking her up to bed, she ALTERNATED HER FREAKING FEET ON THE STEPS!!! ALL THE WAY UP!!

Man, it's been a long time since we've have a bonafide big-ass milestone around here.

There's gotta be a technical term for this. Where's FNPT when I need her?

So I'm excited.

CAN YOU TELL?!?!?!?!

I don't really know how to calm down about this. I mean, I've never seen her do it. It's pretty flipping amazing. To me, at least. And that's perfectly ok.

I don't know when other kids do this kind of thing, whether they have 46 or 47 chromos, no matter.

BECAUSE MY KID.

SHE DID THIS.

TONIGHT!

All the while saying "left, right, left, right..."

Can you tell I'm proud?

I'm so stinkin' proud.

This, ladies and gentlemen, is what having a kid with Ds gets you...

Insanely happy.

Everything happens. Just in its own time.

Thursday, October 20, 2011

More Buddy Walkin'

On October 1st, we attended our very own local Buddy Walk. Imagine that, not having to travel by bus or plane! We didn't even have to drive more than about 10 minutes each way. Craziness.

It was the first day I remember really feeling like fall. And when I say that, I mean it was cold. I realized I had reached another weather milestone. Unlike when we were in The Land of No Seasons, it was going to go from oppressively hot to insanely cold. And I was going to have to learn how to deal with it. Bah.

I know. I'm a wimp.

So, yeah, Buddy Walk morning was brisk.

But it was gorgeous.

Playette got out of the car feeling nice and good.

She's on display, on display, on display.




We checked in, got our bag o' goodies and started with some face painting.



For some reason, Playette's ended up on her hand instead of her face. I'm not sure why I got hooked up and she didn't.

We didn't dwell on that mystery. Instead, it was off to the sidewalk chalk.


Not long after, it was time to start the actual walk. I really love the location of this Buddy Walk. It's scenic, central, and so many people come through there to walk dogs, have parties, work out, or to use the playground that I actually feel like that by having it there, some awareness is raised. People have to ask, "I wonder what's going on over there?" or "Who are all these people in matching shirts?" and I think that's really cool. I know that not every walk can be in a place like that, but it's nice that it can happen.

We did the mile-ish trek around the lake, checking out signs along the way that told stories of people with Ds of all ages. I had considered filling out the form so that Playette could have one, but I got a big, fat case of Something Shiny!Over There! and was distracted enough that I missed the deadline. Go, me.

When our loop was complete, we gorged on pizza and oatmeal pies.

Ok, maybe that was just me with the oatmeal pies, but still. Everyone else could have had some, too. They just need to learn to move quicker.

There was music throughout, with performances by cheerleaders and a dance team. We got to meet new peeps and spend time with friends. Playette also made sure to get her money's worth out of the bounce house.

Speaking of getting one's money's worth out of something...Sheree, if you're reading, please know that we squeezed every moment we could out of those shirts from last year. Both Playette and I were struggling to keep our navels covered. Now that's the mark of a good tee! Still useful and well-loved. We'll surely re-purpose those. Thank you, again. I wish we could be there with y'all again this year. Also? I totally wore those striped socks to the NYC Buddy Walk.

All in all, another great day. So great, in fact, that I came home and crashed for the rest of the night. Party animal. Woot.

Wednesday, October 19, 2011

Siblings

Playette doesn’t currently have any, but there’s always a lot of really interesting discussion going on around me about how people of all ages (must) feel about having a sibling with Ds.

Some believe it’s the best thing that’s ever happened to them. They have joy beyond measure.

While others believe that it would be a pox upon their family for generations upon generations to even consider bringing a child with such a diagnosis into their home…for the sake of their existing or future children.

Personally, I haven’t ever felt like we would or would not have more children based on Playette’s diagnosis. It simply hasn’t been a factor for me. I don’t have expectations for another child of mine to one day be her caretaker, nor have I considered that having/bringing another child into our home would one day lead to resentment of either us or their sister. I don’t know if that makes me naïve or what. I’ve always - well at least after that first year of her life - felt that Playette would be able to one day do for herself. That’s the way we raise her. As if one day she will leave our cover and be her own person.

Shoot, we've got plans for 2025 and beyond. Grown-up plans.

Sometimes I wonder if other parents look at us in shock or disdain because we don’t do more for her, physically. As a first-time parent, I’m only doing what I think is best. Which means that I’m totally winging it.

So, yeah, I ask her to do as much for herself as I believe is realistic for her at that moment in time. Maybe one day I will discover that my expectations were too high. I guess I’m willing to take that chance. Again, it’s a personal philosophy based on how I, myself, was raised, combined with the input of BD, which is based on his experiences. Those were amazingly different, so we meet somewhere in the middle and have created The Smith-Smith Way. Which includes her taking off her own clothes and putting them in the hamper. You know, do as I say, not as I do. That kinda thing. One day, she's going to notice that I'm messier than she is.

But, I digress.

My point in addressing the sibling situation is that I wanted to talk a little bit about how this article made me feel.

In a nutshell, I liked it.

Even though, at age 27, Diondra is far from being Jamie’s older sister, as the article indicates.

Plus, a video would have been awesome. If anyone sees it somewhere, please let me know.

Maybe it’s because I’ve met them both (at different times) that I feel a teensy, itty bitty connection. It just feels like they have a great relationship and I love that. When we were in San Antonio last summer, I chatted with Diondra for a bit at the dance on Saturday night. I told her how I had seen her dance in his Blame It video and on an award show and she inspires me when it comes to thinking of my daughter’s future.

I remember how she placed her hand to her chest and lowered her head in that “Oh, stop, you’re too kind” way. After stepping away, I was told by a friend that she had been chatting with Jamie via Facetime on her iPad while he was in another country filming a movie. I remember wondering what they talked about. Was she telling him what a great time she was having? (Or that she was being stalked by this one weird mom, even?) Was he telling her to live it up and that he’d see her soon?

I’ll never know.

But what I didn’t notice was resentment or any sense of one being a burden on the other.

And I appreciated that.

Tuesday, October 18, 2011

It’s That Time Again

I know it may seem early, but the hotel registration for the next NDSC Convention, to be held in Washington, DC, next July opened yesterday. I just booked our room. That’ll make four years in a row! (Sacramento, Orlando, San Antonio, DC-o)

So, trust me on this, you want to book your room(s) sooner than later. Already, the days are limited to Wednesday through Sunday. At least they were when I just was in the system. You may want to look into that further, especially if you’re planning a longer family trip to see all the sites and prefer to stay in a single hotel the entire time.

They are requiring a one-night deposit this year, most likely to keep people from booking and then canceling at the last minute as in previous years.

Bonus: It’s right by the National Zoo. Which is FREE, people. As all museums and zoos should be, said the girl from DC. There’s also Chipolte right on the corner. It’s a shame that I remember that, but still. There is.

So, jump on in! If you have a family member or friend with Ds, or you work/support people that have Ds, this is an overall great experience. There’s a TON of information and the general feeling of acceptance and being around thousands of people that “get it” is just…unmatched.

We hope to see you there!

Monday, October 17, 2011

Times Square Video

I promised you a link and a link you shall have.

Here's a bit of what it's about, taken directly from the site:

"Every year, NDSS reminds the world in a big way about the gifts that people with Down syndrome bring to their communities through a special video presentation on a jumbo screen in the heart of the Times Square in New York City."

Click through for more details and to watch.

National Down Syndrome Society Times Square Video 2011

I tried to watch it again just now and I started tearing up. What is wrong with me?! I blame the music. I couldn't hear the soundtrack in Times Square.

Yes, I'm blaming an instrumental.

The video is about 19 minutes long. Our girl shows up at 8:35.

Sunday, October 16, 2011

Life Snippet

Me: (while braiding her hair before her bath) Do you know I love you so much?

Playette: Yeah.

Me: Do you know what that means?

Playette: Yeah.

Me: What?

Playette: (paraphrased) It's a song.

=====

This chick cracks me up.

While that's not what I meant because I was actually having a super mushy mama moment (where is my icy heart, anyway?), she's right about it being a song. I sing that to her a lot at night before bed. She loves it when I do.

Sidenote: I used to not like that song AT ALL. It's on this really annoying kid song cd that we have somewhere (hidden or lost, thank goodness).

But then, one day in the summer of 2010, on Lisa's blog, I heard her sing it to Sheridan right before he went in for open heart surgery and it totally changed my mind. Her voice and all the emotions of the moment replaced my memories of the other version and it came back to me with a brand new meaning. I actually wanted to sing it to my kid after that. So I did. Again and again and again. I don't think I ever told Lisa how much that touched me. Obviously, it did.

Saturday, October 15, 2011

I Needed This

Since (news flash!) it's Down Syndrome Awareness Month, there are lots of stories out there about people with Ds doing all kinds of things.

I think that's great.

But those aren't always my kind of stories.

I'm real wishy-washy on the homecoming court/non-defended touchdown type of stuff.

One video in particular that I saw recently, actually made me angry. Well, maybe frustrated is more fair. In a nutshell, it hyped the person with Ds up to be this amazing [fill-in-the-blank] and then when it was time to perform, I was confused, then disappointed, because what was promised wasn't what I saw.

I didn't think that was fair to me or the person with Ds.

I feel this way because I truly believe that people with Ds can do amazing things. Sure, maybe that person was having a bad day. That happens to everyone. But, if they're truly not THE MOST AMAZING WHATEVER, then let them be what they are. It's totally ok. No patronizing necessary. We're not all prodigies in everything. Shoot, sometimes I can't even walk across a room without tripping over my own feet.

So, in the vein of keeping it real, I give you...Addi. She's what I like to consider a breath of fresh air.



I had to come back and clarify my feelings for this video after reading Alison's comment. I can see now that I wasn't as clear as I could have been, originally.

Friday, October 14, 2011

Sharing

It's nice to see a celebrity devoting some time and blog space to Down Syndrome Awareness Month.

I think that Tori Spelling's friend, Lisa, has a great attitude and I'm sure we'll hear more from her in the future.

Check out what she has to say, as well as pics of her cutie-newbie, Blake, here:

-->clicky clicky<--

Thursday, October 13, 2011

Are you crossing the line?

On Tuesday, it was brought to my attention that I may want to consider setting my DVR to record yesterday’s episode of the medical information show, The Doctors.

Why? Well, they’d be talking about people with Ds who choose to have plastic surgery to change their much more obvious facial features to those that were considered more subtle. The goal would be to not be immediately identified as a person with an intellectual disability and perhaps then be afforded more opportunities or maybe even just be treated more like the average 46er. (Guessing these people haven't see this video of a woman getting taunted and beaten, but I digress.)

Ok. I understand the premise. I’ve heard of this type of surgery before, but there’s not a lot of information out there on people that have actually had the procedure(s) done. This is possibly because many of the patients are minors and/or it’s done in secret as to not bring attention to a surgery that was meant to defray such attention in the first place. I do recall seeing an article about a little girl in the UK a while ago. That’s about it though.

Really, it’s not about whether or not I agree with what people choose to do with their, or their children’s, faces. It’s not something I would do with my daughter. I can say that. As much as I wish we could keep her tongue from protruding, I'd much rather continue Oral Motor Therapy than clip it. I just don’t see the point.

Which brings me to the show.

I watched it last night thinking that there might be an actual debate. I thought that maybe they’d shed some light on the types of procedures people are having done, what the “success” rate is, or whatever. I wanted, and expected data. You know, actual medical information from a show built on providing medical information.

Sigh.

Ok, so the topic of the episode was “Are you crossing the line?”. They had several different segments that addressed people’s controversial cosmetic surgery choices, the last of which being the one that addressed Down syndrome.

I admit, I rolled my eyes a lot. There was way too much clapping. There was no debating like there had been in previous segments. It just seemed like, once again, the argument was that people with Ds are perfect and we can’t even TALK about things the way that other groups can.

Their faces remind people that they are different and that’s necessary because otherwise they wouldn’t get the help they might need*. (thunderous applause) People with Ds don’t need to try to be “normal”; “normal” people need to get with the program and accept people with Ds just the way they are.** (thunderous applause)

*But what about all the people with varying disabilities that don’t have Ds? Should they change their features to get help?

** Ok, fine. Yes. But what about the people who don’t agree? Let’s hear from them. Are there people who had it done and are happy with it? Show me. Or what about random audience members who have no Ds connection? Would they treat someone differently if they looked different?

Even Dr. Sears, who has a brother with Ds, said that his parents considered the surgery at one point, but opted not to go through with it.

He then went on to say,““We talk about trying to create normalcy,” Dr. Sears says. “But with Stephen, we could make him look normal on the outside, but he’s not normal on the inside.” (thunderous applause)

Gag.

For a show that talks about Ds on occasion and has a sibling of a person with Ds on staff, you’d think that some People First Language would come into play. But, no. There was a lot of Down’s/Down syndrome babies/people this and that, plus way too much use of the word “normal” for my own personal taste.

Because, really, what is “normal”?

I learned nothing new from watching the episode so that was disappointing. Additionally, it felt very patronizing.

I’m not upset with the show because they chose to talk about a controversial topic. I mean, they didn’t even really dig deep into it or anything. Plus, they didn’t create the surgery; they just brought the information forth. But, blah.

I did enjoy seeing Gail and Blair Williamson on screen though. Gail was the catalyst for our participation in the I’m Down with You project and her son, Blair, is an accomplished actor.

Wednesday, October 12, 2011

I didn't think it was possible, but...

It got better.

Just when I thought gymnastics couldn't possibly entertain me any more (see: "triangle roll" from last week), I paid the registration fee and we were promptly given this to change Playette into:





Sassy!

Wednesdays are hereby declared as the most awesome-est.

Dude. Seriously. Just for the uniform alone.

Tuesday, October 11, 2011

The Ride Home

Today was unique in that BD and I didn't carpool. Also, I got to drive the nicer car. The one with satellite radio. That really, really helps with the commute.

And my swag. I am much more fly when I drive the car. It's been scientifically proven.

Before I got in the car this afternoon to head home, I saw that my friend had mentioned on Facebook that one of Playette's favorite shows was acknowledging Down Syndrome Awareness Month. I made a mental note to turn to Kid's Place Live as soon as I started my drive.

It doesn't bug me to listen to that station, even when Playette's not around. I've caught myself on a few occasions singing along before I realized that I, as an adult, did not have to listen to "Crayola Doesn't Make a Color for Your Eyes" for the 1700th time. Even when I have the option to switch it off, I sometimes stick around because, honestly, I kinda like it. Or, at least, I'm not horribly annoyed.

With that said, I was really anticipating hearing what the host had to say today of all days.

Right after I started the car, I heard her ask for callers who knew someone with Ds. Maybe a sibling? A friend? Or even yourself? What could you share with the audience about that person?

I figured I had a few minutes before the responses started coming in, so I switched to something more adult-friendly for a bit.

When I came back, I heard a little girl's voice. She was talking about her brothers. One of them with Ds.

What was most interesting to me about this scenario was that I recognized their names. And then I recognized hers. She was the daughter of my friend several states away. The friend whose announcement led me to turn to the show in the first place.

This little girl talked about what her older brother liked for a few moments and then she said something that has stuck with me all evening:

"He's the same and we love him."

I think that's what it's all about, peeps.

We're the same in that we're all unique. Every one of us brings something to the table of life. Whether one has 46 or 47, their life matters.

And we all need people to love us.

Thank you, Kit.

Monday, October 10, 2011

Take Two

And here shall follow another post that proves that 31 for 21 doesn't have to include all Ds-related posts all the time. Because this one here? All about me.

Yes, again.

I'm pretty sure I only have 46 chromos, but no one's ever checked. Who's to say I'm not one of those people that doesn't find out until later in life? Ya never know.

So, today was one of those rare, awesome days that BD and I have off from work and Playette still has school. That almost never happens.

We got up and tag-teamed her right out the door before deciding that maybe a walk would be nice. And then when we were half-way home, I got the genius idea to...double the distance. Good grief. I just couldn't leave well enough alone, huh? It wasn't one of those situations where you could just change your mind mid-way either. I added a circle. A really, really big circle. With no short-cuts. One we started, that was it. We had to finish.

When we got home, I raced to shower because...

1. I had a massage appointment! Woohoo! It was the result of what I like to call the Summer of Groupon. I bought so much crap, I swear. And now we are in the Autumn of Using Everything Up Before it Expires.

Then I did something not nearly as fun. I went to sign Playette's IEP. Booooo. I got annoyed and kinda lost my zen-like state.

2. But then I went and got cookies! The local bakery that is known for its workforce of people with disabilities was right next door to the offices, so I just had to go. You know, in the name of Ds Awareness Month and all. I'm all about doing my part.

I got home and watched a little TV with BD, ate some lunch, and...

3. Went to get my hair done! (I hope you're all yelling appropriately when you see these exclamation points. This is exciting stuff.) The experience itself was less-than-awesome, other than the hair washing part - I love that, but the results were just what I needed. See, lately, I've been doing what I like to call the Lazy Brush-Over. I just kinda do the top of my hair. Whatever goes on underneath remains a mystery. Until I go to comb it and it takes 30 minutes of pain-inducing raking. It's a mess and I bring it on myself. With that in mind, I decided to get it temporarily straightened using a blow-dryer and scalp-scalding temperatures. I should have taken a before pic, but even I'm not that brave. Just know that it was an afro on it's best day and then remember all I mentioned about not combing it. Then make that picture in your mind 10 times worse. That was me.

And this is me now:



It's not flashy or glam, but I can get a comb through it. That's huge. And I'm good until it rains or I sweat. That equals about 12 hours, I'm thinking.

I attempted to have BD take the pics so it wouldn't be me doing goofy self-portraits in the bathroom mirror, but my husband and I had some creative differences. No worries. I love him for more than his picture taking abilities, thank goodness.

I still have my San Antoni-toes, but hey...I got a lot accomplished today. I'll get that pedicure in there sometime soon. That's a promise.

And I won't post pictures.

Well, maybe I won't.

Don't be mad. I have some pretty k-a feet.

Sunday, October 9, 2011

Sunday

Another glorious day here, weather-wise. I did my best to soak some of that up because, before you know it, I'll be complaining about the cold.

Auntie left this morning and Playette was none too happy about it. She had her backpack donned and was all ready to go with her. She wouldn't even say goodbye at first. Poor chile.

Shortly thereafter, I began the Quest of Failed Self-Improvement.

BD dropped me off at the hairdresser, but I got tired of waiting, so he came back to get me before I ever got started.

Later, I decided that maybe a pedicure would make me feel better about myself. So I drove to the shop only to find it was closed.

I am still just as much of a mess as I was when I woke up this morning.

In the middle of all of that somewhere, I decided to check in on the TMR boards.

Because, you know, it's been a while.

I don't know what I expected, really. I think that I'm probably still naive enough at times to believe that, generally, people are more informed. That, regardless of whatever choice they make for themselves and their family, they're doing it with the total of the info available to us in 2011.

Just so you know...that's not the case.

I read a lot of ignorant stuff today about children, people, with Ds. Stuff that people really and truly believe. Some of which was delivered to them on a silver platter by medical professionals so it must be true.

At one point, I looked up from reading and directed my gaze three feet down the couch at my daughter.

I wanted to keep an open mind while doing so.

I wanted to see if she was, in fact, suffering and maybe in my own selfishness I hadn't noticed.

I wanted to see if the feeling of her being a burden washed over me.

I wanted to check for every serious medical issue that some of those posters affirmed would occur with every single child with Ds ever born.

And you know what?

I just didn't see it.

I did see a four-year-old girl smiling back at me, in anticipation of whatever I might say or do next.

Her white shirt was stained by the red juice she had had earlier. Her socks were just begging to be pulled off and thrown on top of the shoes she had already discarded on the living room floor. She had an excited little bounce to her, as she usually does.

She was just the way I thought she was before I had started reading.

Happy and healthy and just where she belongs.

Saturday, October 8, 2011

Auntiiieee!

That's what's been yelled all through the house since yesterday evening when BD's sister arrived for a visit.

Playette could not be more thrilled. She gets a playmate and gifts? What could be better?

We went out to dinner last night and then, this morning, when Playette woke up...something was different.

BD and I were still in the bed. And we could hear her. But it didn't sound like she was next door.

Apparently, instead of providing us with her patented wake-up alert of "Mommy! Daddy! Potty!" she decided to quietly slip downstairs and wake her Auntie up.

Well. Hmph.

I'm ok. Really.

No, really. Sleeping in was awesome.

Once we were all up and dressed, we went grocery shopping in preparation for a fantastic dinner that I'm shocked hasn't put me to sleep by now. Barbecue ribs in the crock pot, jalapeno corn bread, pumpkin cupcakes. *swoon*

While everything simmered and prepped, Playette and Auntie battled it out on the living room rug.


After that, the grown ladies went for a walk to enjoy the gorgeous day we had here while BD stayed behind to yell at the TV some more and Playette took a short nap.

We were going to wrap things up with a viewing of Tangled, but...TiVo ate it. Or something. Not that we couldn't watch a million other things, but my heart was kinda set on that.

And, y'know, it's all about me. *eyeroll*

Friday, October 7, 2011

The Rest

So, remember that whole trip to NYC for the Buddy Walk?

Well, when our fun-filled Saturday was over, we still had most of Sunday to spend in the city.

After, once again, housing the breakfast buffet, we headed out. We had decided that we'd keep the day pretty Playette-centric.

First stop, FAO Schwarz.

It was a long walk from our hotel to there, so it was a welcome surprise to come across a market all down 6th Avenue. We stopped at a couple of places, drooled over some of the food being sold (only not partaking because we had just eaten) and ended up with new sunglasses for the bigger two of us. Five dollar bucks for mine. And they're cute. Score!

We eventually made it. I was whooped. Playette was rearing to go.


Check her out. This makes me laugh. "Dreeessss. Dreeessss. Dress! Cheese. (strike a pose)"


I have no idea who taught her that little pointed toe move, but she likes it. A lot.

Once we moved past the dresses, I just kept the camera rolling because she was funny to watch as she explored.


Don't worry. I went back and put everything back.

When I found my fam again, they were here:


Playette and I got down to our socks right after this and did some horrible big piano playing of our own for a while.

We thought about purchasing the floor model for the low, low price of $250K, but decided that eventually owning a home might be the more fiscally responsible option.

We are such dillhole killjoys.

To get the festive mood back, we played around some more before heading over to Rockefeller Plaza to tour an exhibit on education...


(I couldn't resist the scramble board.)


...back to Times Square for a Thai food lunch, people watching...


...and, finally, the pièce de résistance:


My little cell phone camera does this lighted mammoth no justice. Playette was excited as we stood in line (translation: she thought she was too good to wait and tried to bust ahead) and quickly pointed out the car with "Lala" on it.

That stumped us. We kept looking and looking, seeing Dora, well, nowhere.

Finally, I spotted her. Way up at the top, in the tiniest corner of a Nickelodeon-themed car. I can't believe this kid is supposed to need glasses. She wasn't wearing any at the time. Hm.

So, lucky us, for the next 15 minutes, we got to hear "Lala! Lala!"

And of course it's first come, first served. You can't just want "Lala" and get her.

I felt really bad by the time we boarded and missed it by one. She had to watch "Lala" go round and round in front of us the entire time. Womp, womp.

BD and I were ok with what we got though. What self-respecting child of the 80s wouldn't want to rock the Mystery Machine?! I mean, really.


They got a really cute picture of all of three of us in the ride, but, uh...it would have cost more than our lunch so...sorry.

It was another great day. We left there, grabbed our bags from the hotel, I went to get some bagels to bring home, we boarded the bus, and actually had a really decent ride back home.

And that's all I have to say about that.

Now that's it's a week past our local Buddy Walk, I hope I can get that in sometime soon, before we head to our third and final for the year.