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.

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.

Buddy Walkin': NYC Part II

First off, HI, ZOE!

Or do you spell it with a "y"?

If so...HI, ZOEY!

Zoe(y) is the nice lady we meet right after walking up the hill to the lovely home base of the NYC Buddy Walk and wandering just a bit. She was there as a volunteer, meant to assist folks just like us who needed some direction.

But what was so unique about this direction-giver is that she recognized us.

Wha?! Little ol' us?

Yup, Zoe(y) reads along here and I really wish I would have taken more time to talk to her then. Since I didn't, I hope this salutation helps to show that you're appreciated. Thank you not only for joining us in our journey, but also for all you do to support the Ds community.

Pretty quickly after that chance meeting, we were able to get all registered and shirted up. The six of us were all part of Team Signing Time, so that meant Playette got to meet up with her idol right away since it was almost time to take a group photo.




They are just too cute.

We even had the good fortune of meeting Rachel's family. Here's Playette with her three daughters, Laura, Leah, and Lucy.


The look on The Littlest's face is her realizing that she's not, in fact, Signing Time's one and only love.

Playette followed Rachel/Signing Time around a lot. So much so that by the time we looked up (and had finished some popcorn and cotton candy, natch), we had missed the start of the actual walking part of the walk. So, the group of us rushed over to the starting point, hoping that we'd figure the path out somehow. Good thing it didn't turn out to be too difficult after all. Plus, the mob moved slow enough that we caught up pretty quickly.

I loved taking in the sites of Central Park. All of the runners made me want to run. It's just such a pretty place in the middle of the big city. It's hard for me not be awe-struck at least once during every trip.

BD was carrying Playette in a backpack while we strolled and she made good use of her time by passing out about 3/4 of the way through the loop.


She woke up in time to get her medal at the finish line though. Check her out, nice and refreshed!

Which was a good thing. Because it was time for the Signing Time performance.

It was wonderful, as expected. Rachel even called out to Playette a couple of times from the stage, which, surprisingly, didn't make her head explode right then and there.

She did have the idea, though, that she belonged on that stage, so I had to go grab her back from trying to do just that at least twice during the concert.

Leah performed with Rachel for most of the show and then Lucy came in for the last song. Which, um, had me bawling.

Couldn't. Help it.

Great, great, great time. We enjoyed it so much, we already have plans to see another concert again very soon.

To keep the momentum going - I think we were all ready to celebrate that the promised rain failed to make even a teensy appearance - the DJ got to work.

My girl loves to bust a move. It's almost like she's challenging BD to a battle at one point in here.


There was lots more move busting and snack eating before we realized that, as usual, we were among the last people there. We know how to shut down a party, yo. We left to the sound of balloons being popped for clean-up.

The rest of the evening was spent noshing on noodles here and slurping on sundaes there.

We even had a Nina Garcia spotting.

All in all, a great day.

Thank you so much to the SkaSka's for joining us!

Buddy Walkin': NYC Part I

Oh, yes. It's me again. I'm crazy back.

This whole working in an office - well, hopefully untainted trailer - thing? It's pretty draining. And hostile. But that's a post for another day.

And days are something I have plenty of, actually.

Because it's October.

Yes, already!

Today marks day one of Down syndrome awareness month.

And with that comes one of my favorite ways to celebrate and advocate: 31 for 21.


Grab This Button


I've been doing this for a while now. I'm thinking since I started blogging back in 2008. The way it works is that I, along with many other bloggers, commit to writing every day in October (31 days) in a show of solidarity and support for those with Trisomy 21 (Ds results from having three of 21st chromosome).

If you're interested in joining in, go see Tricia and sign up. You only need a blog, not a direct connection to Ds.

Even though if you're reading here? Allow me to be your secondary connection. I've checked with Playette and she's cool with that.

LEZGO!

So, my first post is so late. Of course. But right on time for this effort, which means my procrasti-fatigue paid off in a way. I kept meaning and meaning to write, but with so much to say and photos and videos (which you all totally deserve after a pretty desolate September around these parts), I knew it would take time that I just didn't have.

But I got up early today. Just for you. We have our local Buddy Walk this morning, but there's still plenty of time before that. I went to bed at like 9:30 last night so getting up at 6:30 felt like sleeping in and that I better go do something productive already.

Since milking a cow was not an option, here I am.

Last week was an adventure. For anyone that follows me on Twitter, you got a bit of a participation explosion from me last Friday night. Why?

BECAUSE I WAS ROTTING ON A BUS!

What seemed like a semi-good idea in the beginning turned out to be a version of torture for me. I mean, logistically, it made sense. We wanted to go to NYC for the Buddy Walk. Rachel Coleman was performing.

[I kinda like seeing my kid lose her ish for Rachel. And then when she gets extra-stalkery, I have to step in, but still. She loves her some Rachel and Signing Time.

Actually, she doesn't call Rachel by name anymore. She calls her "Signing Time." Which would be rude if it wasn't so damn funny to watch her do. Actually, it is still rude, bur Rachel's very, very cool about it.]

Since moving from California, almost anywhere on the east coast seems close. Because we're not a country away from it, right?

NO.

New York is not close. Trust me. And the drive to get there from here is painfully boring.

And that's why paying someone else to drive us there sounded positively brilliant! Because, hey, we'd leave at midnight, a mile from our house, we'll save money in the end between gas/tolls/parking/wear & tear on the car, we'll surely just wake up, fully-rested, a few blocks from our destination. What could be better?!

The answer is: a plane. A plane would be better.

A plane doesn't take 6.5 hours. A plane would have only cost $30 more per person. A plane doesn't freak you out by taking you the wrong way in the middle of the night. A plane doesn't make that rumprumprump sound that scares you out of your 3 minute nap because the only time you should hear that is when approaching a toll or running off the road and YOU'RE NOWHERE NEAR A TOLL BOOTH!

Yeah, I was grumpy. And because the last rider had spilled coffee in the seat next to BD, Playette was with me most of the time and she was a slightly less than stellar riding companion. Apparently, between the two of us, one of us needed to stand watch, so, as the "adult", I took one for the team. Yay, me. With no sleep, I was a flippin' peach when we finally disembarked in front of the peep show behind Old Navy.

Classy, I know. You're totally jellus.

I must mention the other reasons we decided to go. Some of our friends have an 18-month-old who also loves Signing Time and since they live in NY, we'd be able to enjoy the day with them. Plus, Central Park just sounded like an awesome place to have a Buddy Walk.

Aaaand, Playette's picture was chosen for the NDSS video in Times Square.

Had to be there. Had to.

Don't know about the video? Here's a clip from the official press release:

"The photo...was selected from over 1,200 entries in the NDSS worldwide call for photos. Over 200 photographs will appear in the video, which will be shown on the larger-than-life MTV plasma screen, located in the heart of Times Square."

Yeah, we had lots of reasons to go.

And, honestly, after that bus ride, things got much better.

We got our bags and walked the short distance to the hotel. Playette was thrilled to get her land legs back and had a ball zipping down the clean and mostly-empty city streets. She did find it necessary to point out to me the people that were sleeping though. I wasn't quite ready to explain homelessness.

When we got to the hotel, they had a room ready (bless them!) and extended the breakfast buffet to us (totally not required, but greatly appreciated). Grateful, we hustled upstairs and took naps before waking up, getting dressed in our gear courtesy of Sheree, housing the buffet, and walking to Times Square.

When we got there, we immediately picked out our peeps, posted up underneath the large screen with the gold frame around it that reminded me of the mirror my mother loved so much when I was in high school and college and that I kept in my own home for many years.


Yup, right between T.O. and LaLa. That was the spot. Superstah!

I took that last picture on Sunday though. Because on Saturday, I was too busy running my mouth to all the people around us like Ben's family, out celebrating his first birthday in full force, and Jewel's whole group of Gems. They really came out to represent for those kids and I loved seeing how much support they had.

I'm doing some thinking right now and choosing not to write it for the world to read, but if I didn't write something in this space, I'd be mad at myself. Infer whatever you wish. How's that?

Anyway.

The video lasted about 20 minutes and Playette showed up right in the middle, with her cute self. I was riveted the entire time because I could not, for the life of me, remember which photo I had submitted, so I was freaking out that maybe I'd miss her. Really? I thought I wouldn't recognize my kid? I'm such a wack sometimes.


When the video is available online, I'll share the link.

If my mother were alive, I probably would have gotten popped right in Times Square for submitting a picture of Playette sitting so unladylike. Oops. Still adorbs though, right? I promise to keep her out of clear heels, 'k, Ma?

Our friends arrived just as the first showing of the video was wrapping up, so we watched the second one, too, before heading to the buses that would take us to the main event.

This seems like the perfect place for a cliffhanger, soooo...

Stay tuned for Part II!

And, if you're so inclined, any donations to any Buddy Walk are tax deductible. If you go to one in your area, let me know. They're fun. We went to three last year and will do the same this year.

If you work for the Feds, both NDSS and NDSC are listed to receive CFC contributions.

Goings On

You know, I seem to dip in and out of this space a lot lately, but, truthfully, it's summer. And I don't want to look back and say that we didn't live it up when we had the chance, y'know?

So we've been doing just that. And so I'm behind on my emails and phone calls and posts. But that's what winter's for, right?

Know that I won't quit you though, k? I mean, even at the times that I start to think that this blogging this doesn't really mean anything to anyone but me, I get confirmation that what I write matters to someone. Even if it's just one, it's one. And that means a lot to me. So here I am.

There's been quite the activity in the Ds community lately.

First, and most importantly, there was the NDSC Conference in San Antonio, TX, last week. I can't say enough about it. Where else can you spend 4-5 days in a resort setting and hang with a bunch of people that just get it? And then you eat, dance, laugh, cry, learn, speak, and listen. It's pretty awesome.

This was our third time attending. We went to Sacramento and Orlando and it would take something massive to keep us away from DC next July. So get your bags ready and start setting aside your allowance, y'all. It's worth it.

We didn't take a camera, but thankfully others did. I'll either share some pictures here soon or provide a link to where you can see them. Playette was quite the poser so she made it into lots of shots.

Oh! While we were there, we had the chance to go to Morgan's Wonderland and I'm so, so glad that we did. A theme park that utilizes inclusive practices? Bonus.

I loved seeing our friends and friends that have become like family. The only thing that blew was that it didn't last longer. But it gave me hope and the strength to continue to fight the good fight.

=====

Good thing, huh, cause in the midst of all of that warm-fuzziness, there came word of the whole The Change-Up controversy.

I've said it before and I'll say it again...just because you can be a jerk doesn't mean that you should be.

If it's "just words" then why is it so hard to make the switch? It's a matter of respect. And if you can't respect my kid, I can't respect you.

That's the nicest, most concise way I can put it.

If your friends, family members, or co-workers still don't get it, fell free to forward them this.

=====

And then there's this story.

Um. Well.

You may be surprised at my reaction, but I don't think he should play.

To me, that's the definition of treating him special-special.

I'm not a fan of special-special.

One thing I learned from the conference session on inclusive practices is that we can't have it both ways. We can't want for our kids to be treated just like everyone else and then not want them to be treated just like everyone else when it doesn't feel good.

Inclusion, to me, means that everyone is together and supports are provided when necessary. In my mind, it's not that we get the best of all possible outcomes at all times.

I admit, my kid is four. I have a long way to go and my thought process is certainly skewed by my limited experience in the land of Special Needs Parentdom.

I also admit that I don't always take road less traveled. Some days are hard enough as it is and I welcome a break. Any break.

So when someone offers Playette a special pass for free admission to the zoo, I will probably accept on her behalf. See? I'm not perfect. Perhaps that even makes me a little hypocritical.

But I'm not going to be mad at the zoo if we go and they don't offer Playette a free ticket. Because no one else gets free tickets. Does that make sense to anyone but me?

Help is nice, sure. But it's not a given.

So I guess if they had decided that Brett couldn't suit up, but could still do some stuff with the team (which it sounds like may now be the case), then I guess I could be convinced to be ok with that. But I don't like our kids treated like mascots. And I don't think that they should be allowed to break rules courtesy of the extra chromo.

When I was a kid and used to say, "That's not fair!" one of my parents would always reply, "Life's not fair."

Maybe that's why I'm cold-hearted. Or a realist. Or whatever.

=====

But back to the happy-happy-joy-joy! Washington, DC. July 20-22. Come early or stay late. Just be there.

We'd love to see you.

Because I Promised

Here goes nothing.

I can't watch these or else I know that they'd never get posted because I'd pick them apart forever and end up writing myself a script instead and then that would take too long so I'd end up forgetting altogether and...yeah.

BTW, I did these on my phone. You may need to tweak the volume some. I was working my sexy sleepy voice.

Celebrity Sighting

I don't know who I was more excited to meet...Hannah or her mom. They're both total rockstars in my mind.

They came over yesterday.

All the way to our house, just to help me, and I couldn't have felt more honored.

I'll talk more about what we were doing and why later on, but I just felt like I had to share.

Beth and Hannah represent a lot of what I'd like to eventually see in my own personal mama-daughter combo.

And, let me just tell you, people that go out of their way to help me? And my kid?!

You're stuck with me.

It means the world.

Encore!

We continue to stay busy over here, taking full advantage of the ushering in of summertime activities.

First, there was our first beach day yesterday.


It was a great time, thanks in part due to our meeting of another mom out there with her twin boys who happened to be very close in age to Playette. The kids really enjoyed one another and the other mom was of the more-awesome-than-I-am variety because she had an abundance of snacks. Playette even ate a half-sandwich she was offered. Which is amazing. She doesn't even eat sandwiches! At least not my sandwiches. Hmph.

Turns out that not only did one of the boys have Ds, but he also goes to Playette's school. He's in the morning class and she's in the afternoon. (well, sort of, but it's a holiday, so I refuse to think about the school sitch right now)

Anyway, FUN.

And since then, Miss Playette Keys has been entertaining me with her musical abilities. I figured I'd share a couple of her recent concerts with you.





My girl loves to sing. She's always singing something, whether it's a song on the radio or one of her own composition. Usual lyrics include: Mama, Lea, Daddy, night night, wash hands, let's go, etc.

Many, many thanks for Cate for her wonderful suggestion of the M&D Birthday Cake set. Cate always has the best toy ideas. Like the Alphabet Bus, also a huge hit in this house.

Today, I'm thinking that we may head to the neighborhood pool for a bit. I mean, if I have to wash this child's sandy head and deal with the dramatic hot mess that comes with that action, I need to make it really worth my time and get some chlorine all up in there, too.

=============

To all of the men and women who serve, including my very own BD, I'm proud of you today and every day.

Odds/Ends

I keep meaning to wrap up a few themes on here, but then something else happens that catches my attention (oohh, shiny!) and off I go on that tangent.

So, for those who were wondering:

Playette is adjusting well to her dad being back home. The strange throat thing she started doing after he left did not miraculously disappear at homecoming like I had hoped it would. Boo on that. At least now I have company in being driven crazy by it though.

She was absolutely thrilled to see BD again. I can tell that she's still adjusting. When he's gone to work, she'll ask if he's away on the boat. I tell her no and that he'll be home soon, but I don't think she believes me. It takes him walking in the door for it to be true.

She's quite clingy to both of us and loves holding one hand each while we walk. I'm sure there's a lot of security in that and I can't blame her one bit. She thrives when both of us are present. She's just...happier that way.

Now, when it comes to discipline, she definitely listens more to me than BD. In her world right now, he makes suggestions and I lay down the law. We're working on getting her to understand that both of the big ones run the show.

=====

The Mom's Night Out went well. I got there a little late, but still before dinner was ordered. There were five other mothers there and it was quite a nice mix of children's ages and diagnoses. Not all of the people that participate in the Ds support group have children with Ds and I think that's awesome. There are some uniquenesses about children that don't allow for large groups to support the families and I'm happy that they have a place with all of us. There can be many similarities when it comes to chromosomal abnormalities. At the end of the day, we're all in the same gang.

I'm looking forward to the next gathering. This group tends to do things together quite a bit a bit, whether it's with everyone, the moms, the dads, the kids of different ages...I think we've got a little something to do for a piece of every weekend in February. That's even cooler when you're new to an area and don't know many people.

I have met some great folks so far. One family has a little girl very close to Playette's age, another family is within walking distance of our house (!!), and yet another family has quite a few similarities to our own which has lead to any easy connection.

I also have a couple of college friends in the area and some people from our last duty station have moved here as well.

I don't want to wait too long to make myself at home here like I did before. We'll be gone again before you know it!

=====

School is going well. I'm going in in a couple of hours to observe the class in action and then we'll have a quick IEP meeting. Did I just write "quick IEP meeting"? Hm. I'm still not so sure those exist. But they tell me that this is just a transfer from one form to another, basically, and that we can meet again when everyone has gotten to know each other a little better. We shall see.

=====

We're all moved into our new home and, for the most part, there's a place for everything and everything is in its place.

Just don't open the closets.

Who left the gate open?!

Well, someone did.

'Cause I'm back.

*exhale*

No, really this time. I mean it.

And now I can finally tell you why I was gone.

See, BD's job is kinda awesome and then it's kinda not sometimes.

He was deployed for four months. And that kept me very busy.

Not a long time in the military world, I know, but I'm one of those spoiled newbie wives who never had her husband away for more than a few days. As a matter of fact, the longest we were ever apart previously was the 12 or so days when I was away. When we met, he had a desk job and then our first move together took us to a place where he could go to graduate school. So, in five years, most evenings he would beat me home.

That all changed on August 30, 2010.

Playette and I, along with a group of motivated friends who share our sense of humor, saw him off for a 6am flight, complete with amusing (to us) signage and hugs and overreacting fall on the floor craziness a little emotion.

The days went by slowly, the weeks passed, the months eventually added up.

We were able to talk by phone once or twice a week and email almost daily. Unfortunately, Skyping wasn't an option at sea, but we were able to do so before he got to the ship (Bahrain) and during the last port stop (Greece).

Playette and I heeded the advice of more experienced folks like Michelle and Renee and stayed busy. That's why we seemed to be moving around so much. We went to Sheree's and Michelle's and Andrea's and a total of three Buddy Walks and experienced many, many flights (yay for coupons that needed to be used!). We visited friends and family in Arizona and spent a mama-daughter few days in San Francisco over Thanksgiving and soooo many things in between.

I ran my second half-marathon and we even made it into a front page article of our small town paper. I lost my final 15 pounds over those 16 weeks and achieved Lifetime status with Weight Watchers. Grand total: 52 pounds.

And because I know I would want to know, it took me 20 months.

Since then I've fallen off the wagon a bit because...

Then BD came home! WOOHOO!

But the day before he was due, my herniated disk (occurred totally randomly and reared its head after I had finished the race, thank goodness) flared up on me and I ended up in the ER. They IV'd me (ACK!) and gave me bueno drogas (ahhh) and an epidural (WHOA) and kept me overnight. Luckily, I had a sitter over at the time everything was going down and she was able to help me before friends jumped in and took care of Playette while I couldn't.

By the time BD walked in our front door after hours of traveling across the country and way too many delays, I was home and feeling a little better, yet heavily medicated. With the big guy back, we've been doing tons of eating out in the midst of happy, family-together-again time and then there's the whole "I can't exercise" thing, so, well, I'm not planning to step on a scale anytime soon. My pants are tight, yo.

And in case that wasn't enough, we thought we'd throw a cross-country move in there.

[INSERT STRESS HERE]

Now, the three of us are living in a hotel room, waiting for a place to call ours. Exotic, right? Darn tootin'.

In between moments I'm not entirely proud of, I am taking this all much better than I anticipated. Alone with the kiddo while my typically very active partner was away? Scared me. A lot. But I did it.

I've wanted to write so many times, but my words kept reaching into "I'm overwhelmed because my husband isn't here" territory and I just didn't want to allude to us being alone in the house. I couldn't do it.

I'll tell you more about how Playette did during that time in my next post.

Thanks for sticking around.

The Travel Deets

Ok, so maybe this will be the most boring post ever, but, eh. I just feel like sharing.

So, I was very proud of myself for being all packed and ready to go last Wednesday night. I even put the suitcases in the car so that there would be no delays in getting us to the airport by 5am. I didn't get much sleep, but I figured that I'd catch up during the two plane rides.

On Thursday, I was up at 4, got myself cleaned up and dressed and then did the same with Playette. We were a few minutes late leaving, but such is life with a three-year-old and a very sleepy mama.

Our airport is close by and teeny tiny so I didn't anticipate any problems.

That was my first mistake.

As I dragged our luggage through the doors, I realized something.

The line was long. Really, really long.

And it wasn't moving.

The plane wasn't there. It never landed the night before, due to fog, apparently.

And that fog? It was still lingering.

After about an hour, we made it to to the counter. The hope was that we could still make the connection, but it was already looking bad. Just in case, the agent saved us seats on another, later, flight that would take us though two different cities, adding another leg of travel and several hours.

I really wanted that original plane to show up.

I had packed a lot of snacks, but still.

Fast forward 5.5 hours, two itinerary changes, another hour in line, a Signing Time DVD on the laptop, two calls to United customer service, two trips through security, and zero planes landing and I was D-O-N-E. So were the snacks.

Playette was doing remarkably well. Since I hadn't packed enough pull-ups in the carry-on to get us through such a long day, I was making sure to take her to the bathroom regularly and she was doing great.

There weren't many breakfast choices, so we shared a croissant, which did not please my companion. I tend to forget sometimes that so many things are firsts for her. I don't think she had ever had croissant before and to have it all smashed and butter-drenched was not exactly appealing to her. Too bad my brain doesn't work the same way.

So, yeah, I was done there. I ended up calling to get on the same 6am flight the following day that we had originally been booked on and when I confirmed the details, I was informed that, yes, I was on the flights, but Playette was not. There was no room for her.

Okayyy.

That wasn't gonna work.

So, my next option was to come back that night and take 3 planes to Wisconsin. It had to be done. There was no way were weren't taking this trip. But even though Playette was in good spirits, she looked awful. She was getting sick and I welcomed the break from the airport.

After retrieving our luggage, a friend came to get us and brought us home. On the way, I called the pediatrician and made an appointment to get the Littlest checked out. The last thing I wanted to do was take a sick kid to someone else's house and get all their kids sick. I at least had to know what I was working with.

After the doctor's office, we got scripts, lunch, and came home for much-needed naps.

At 7pm, the fun started all over again.

This time, though, the plane took off. Late, but still. We left.

When we landed in LA shortly before the flight to Chicago was to depart, I noticed that the carseat dolly thingee was broken. I had made the mistake of gate checking it and they were not gentle.

That, frankly, sucked.

So not only was I loaded down with carry-ons, but now I had the dolly, Playette, and the carseat to get wayyy across the airport to a flight that was already boarding.

I didn't have enough hands.

And no one at the gate was offering any form of assistance.

Until this one pilot became my hero.

He took Playette and I grabbed everything else and we ran. I mean RAN. I was soooo grateful for my tennis shoes and all the miles I've been putting on them lately because we were on a mission. Missing another plane just did not feel like a viable option.

When we got to the gate, I was a sweaty mess and they were waiting on us. Like, "Really? Where have you been?"-type waiting on us.

I grabbed our outstretched boarding passes (thankfully, they thought to change our seats so that Playette and I would now sit together), thanked the pilot profusely, and walked onboard.

There were about 7000 people on that plane. And they were all giving us that same "we're waiting for you" look.

I try not to get embarrassed about things like that that are out of my control, but I could feel my face getting hot. I was already sweaty and loaded down with stuff and we had a long way to the back of the plane. I didn't have the hands to keep Playette close, but, thankfully, she makes friends quickly and was saying "hi!" and waving to everyone she passed.

So, as I fumbled in first class, I looked up and saw a familiar face. When I see famous people, I always first think that it's someone I know personally. It took a second to register that, no, this was not my 11th grade History teacher, this was Smokey Robinson. "Tears of a Clown" and "Quiet Storm" and a million other songs Smokey.

Suddenly, I perked up. I looked at him and quietly said, "I'm a big fan," and then shuffled down the aisle, after Playette, feeling good and humming songs.

We had a pretty long layover in Chicago, close to three hours, so Playette and I hung out in the frequent flier lounge (free snacks!). Guess who else was there? Mr. "Cruisin'" himself.

He made eye contact and I said, "Hello again." He got up from his seat and greeted Playette, who did not happen to be at her friendliest. We talked for a couple of minutes (He said that Wisconsin is beautiful - true!) and then we said goodbye so that he could get back to resting. Playette offered an "I yuh oo" as we walked away.

I was too tickled. I really like him.

After breakfast, we made our way to the other side of the airport (thank goodness for luggage carts!) and boarded the last, short flight to our destination.

It was a long beginning to a great weekend. All worth it in the end.

It's EXACTLY like That '70s Show!

Ok, well maybe not exactly like it.

But it was Wisconsin.

And we were there.

Yup, Playette and I made the fantastic decision to head east for a long weekend of visiting with friends and adding a little bit of advocacy on the side.

Who do we know in Wisconsin? Well, these great folks.

I've written about them here before. They have a daughter named Ruby who is just over a month older than Playette. I came across the family's blog when I was still coping with Playette's dx and I immediately identified with this mom of a little girl who reminded me so much of my own. I'd been hoping that these girls could meet for quite some time. And then it happened.

After initially checking each other out like rival greasy dancers on the set of the "Beat It" video, Playette and Ruby came around and decided to be besties for the duration. Success!

Since we're become friends, the Z fam has grown and, while I was so excited to meet everyone, I was especially looking forward to a hug from Lilya, their newest addition, home for nearly three months now after her adoption from an orphanage in Ukraine. Lily has left an impression on us for sure. I've been home for 24 hours now and I find myself answering questions with her trademark "Dahhh" ("yes" in Russian) and Playette spent the evening asking "uuuup?" just as Lily likes to play.

There's something about being a part of something larger, y'know?

I don't have a big family and whenever I'm around one, I just feel like I want to make myself at home. There's always something going on.

Other than laundry and dishes, I mean.

We played indoors and outdoors. We saw Rachel Coleman speak about her experiences raising her children. We ate friend cheese curds (and ice cream, fruit fluff, pizza, fudge, chocolate chip pancakes, etc. All organic. Ha!). We walked in the first annual Ds Awareness Walk for that area. We saw our kids perform on stage with Rachel during her Signing Time concert. We went wine tasting - in the living room. We laughed. We cried. We shared.

It was a time that I'll never forget and I am so, so grateful for my friends.

We've really met some wonderful people on this Ds journey we're on.

Will we go back?

Dahhh.

Pictures tomorrow...

He Likes Me

I just came back into my office after going on a post-work, pre-home disappointment of a run and I saw Mr. P. Remember him?

Well, as I'm coming through the door, his face lit up. We haven't seen each other in a while and it was unmistakable: He was happy to see me.

We spoke briefly and I skipped up the steps a lot more easily, I'm sure, than I would have if we hadn't had our encounter.

That's a gift, you know. To be able to make another person feel like that.

I like him right back.

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.

But Wait, There's More!

Our trip to LA didn't end with the I'm Down with You shoot.

Right after we were done there, we headed straight to visit Lisa and her family. This was our second visit, the first being last July.

It's always so much fun to hang out with them. I am so happy to be around this family. I know that sounds hokey, but seriously. I find big families fascinating. Not in a "put them in a petri dish" kind of way, but more like the kind of envious longing that comes from just never having lived that kind of life before. In Lisa's house...six kids seems so do-able. Now, I know we're "company" and the kids surely test their parents more than they do me, but still. I like the feeling of being a part of a group. And the activity. The sheer diversity of it all. So many personalities. And then I imagine what it will be like twenty years from now, during the holidays and such. It's pretty awesome.

No contradictions outta you, Lisa. Let me live in my visit-every-so-often fantasy world, k? ;-P

All of that activity does mean that it's hard to get a good picture sometimes, but I can live with that.

Baby Swap 2.0
Just because I feel like gushing more about their kids, who are so extremely kind and welcoming to my Littlest, five-year-old Daisy drew this portrait of Playette, which currently holds a place of honor on our fridge:


I love the detail of her hairstyle and the objects she was carrying around in her hand an the time. There was no help from any of the grown-ups with the name spelling either.

And thirteen-year-old Kevin? Well, check him out standing up for his little brother and any other people offended by the use of the r-word here:


Kevin will be giving this speech at his school early next month. While it's not related to our visit, I still wanted to share this here because I'm really proud of him.

So, in the quest to top the last visit, this time we ventured out to dinner. When Lisa asked if I was open to that idea, what do you think I said?


I am such a dork. The only one cheesing like we were on a grand prize cruise or something. I am also the only one not seated next to children that need much assistance. All part of my fantasy.

I love this pic of Finn:


When we left the restaurant, it was like a parade! (tee hee)


Lisa, you can totally laugh at me now. I deserve it.

BTW, Lisa wrote a great post about having a big family here.

Our Experience: I'm Down with You

I know that many people "in the Ds know" are aware of this project, but this may be new info for others.




From the time I first saw the video and website months ago, I've been excited for the day I'd be able to purchase this book. It's important for me to have Playette see people that look like her, beautiful and capable and in the public eye. She already has a nice collection of books showing people with all kinds of differences and I'm Down with You will be a welcome addition.

=====

By the way...

I highly recommend these books for all children, because, really?...They're gonna run into people that don't look or live just like them at some point and wouldn't you want your kid/niece/nephew/grandchild/friend's kid to be informed and just be able to go with the flow? [/soapbox]

=====

So, imagine my elation when Playette was invited to participate in one of the final photo shoots for the book!

We didn't hesitate with an affirmative response and a couple of weeks ago we packed up the car and headed down to LA.

She played shy at first so I had to sit with her on my lap while the pictures were being taken. We practiced signing to take her mind off of all the attention. Here she's showing the photographer one of her favorites: music.


We had a great time hanging out after Playette was done. There were other families present and talking to them and meeting their children was so much of the experience.

I told BD that we were leaving at least three times over two hours. It was so hard to walk away. (And not because it was special-special. It's just nice to be around people who I can tell without hesitancy that Playette will be three in June and not just "two" when asked how old she is because I don't want to hear the, "Oh. Well. She's so tiny," or the "She's not talking?")

We also met Katelyn, which was awesome for me because that little girl's face got me through a rough time after Playette was born. Seeing her on the Toys R Us catalog did something for me that I hope seeing Playette will do for others. I was inspired and it was an honor to be able to share that with her parents.

I didn't get a picture of Playette with Katelyn (they were both having too much fun to stop and pose), but I did get a couple of other opportunities.

At one point when I was chatting away, another parent came up to me and said something along the lines of, "I thought you might like to know that Sharon Stone is in the other room playing with your daughter."

And that she was. For a really long time, too. They got along quite well.


We also had the pleasure of meeting Lauren Potter of recent Glee fame. She told us that she started back filming the week prior so we can look forward to seeing her on the show again when the new episodes air.



Now that all of the photos for the book have been taken, the work begins on choosing just the right shots and putting it all together for final production.

I'll be sure to keep you posted as I learn more details and you'll see me cheesin' from here if Playette actually makes it in the book.

Hanging with the Phamily

Back in June, we went to Sacramento to visit Sheree and her crew.

This time, they came back to our 'hood. Of course, talking to their parents is always great, but Cameron and Gabby? They are some cool kids, lemme tell you. Cam cracks me up and Gabby is just the sweetest.

Friday night, we met up at a sushi restaurant. For those that don't like raw fish, never fear. If you ever come to eat sushi with me, rest assured that I will find the thing most unlike raw fish on the menu to eat. I'm pretty sure my rolls involved deep fried something-or-other and sauces and crunchy things. Good stuff.

Cameron even got a complimentary marble soda thingee, just for being Cam.


After dinner, we came back to the house to relax and unwind. The kids played while the grown ups talked.



Playette is so much more interested in Gabby now than she was last time. That's a testament to how much Gabby has matured in the last few months. Remember, my child thinks she's much older than she really is.

Playette says hi.
Gabby says hi.
You might not be able to tell here, but Playette kept one hand on Gabby's pant leg, while she was climbing the step like, "Be careful. This place is dangerous."


Tell 'em, Playette!
Playette also took an interest in Sheree's Pantene ad-worthy hair.


And then gave her an extra-special thank you hug for the pretty sweater she brought as a gift. Sheree knows how much we love our sweaters over here. Hopefully, she can wear it as well as Gabby does.


We were able to get together again on Saturday for lunch, which was so much fun. It all ended with a slice of peanut butter cup cake that we all shared. I'm still giddy about that cake. It went too fast to even get a picture of it.

Unfortunately, We weren't able to join them for a trip to the aquarium this time, but I'll wait until tomorrow to tell you more about the reason why...

Edited to add: I just clicked over to Sheree's blog to look again at her description of the visit they made here last year and OMG, check out how much the girls have changed since then. The babies! Where are they?

NDSC Conferece 2009 Recap

So after the whirlwind that was traveling to and from Phoenix, we made it home. BD was waiting for us at baggage claim and it was great to have the family together again.

But no time for mushiness, we had a mission!

After getting in the house at about 11pm, there was unpacking and repacking and a 3:30 am wake-up call to consider.

We were out of the house not long after 4 am and pulled up to the Sacramento convention center just before 7.

WHEW.

I went inside and was pleasantly surprised to be checked in by Lisa, who was volunteering. When I got back to the car, we came up with the plan that BD would head over to the house of the family friends who were so gracious to allow us to stay with them for the weekend. He'd get her cleaned up and fed while I attended the morning part of the nearly-all-day pre-conference session with Libby Kumin.

Ready, break.

First stop: "From Infant Babbling to Adult Speech: Helping Children with Ds Develop Understandable Speech"

Talk about overwhelming. Whew! I'm not sure I was good for any kind of long session like this after spending the prior three days learning about thrilling topics like appropriations law, audits, and various other acronym-filled Power Point sessions.

The good thing about this session was that a lot of people got their questions answered about their specific situations. The bad thing about this session was that a lot of people got their questions answered about their specific situations. (Ok, ok, so I asked a question too.)

Catch my drift? It was a long morning and Ms. Kumin was very patient.

My favorite part, though, was when she showed video of the young people she works with. At one point, there was a group of young women sitting around a table, discussing their plans for a party. It was really cool to observe and they all spoke clearly and with intent. They talked about their feelings, likes, dislikes. Very cool.

At lunchtime, BD came back and we met up with a great couple who was also attending their first conference. The wife found me through this very blog and we've been emailing and chatting by phone for months now. It was great to finally meet them and introduce them to Playette!

After lunch, I went back to the same session for a while, but I did peek into the end of the session hosted by Sara Rosenfeld-Johnson, "Improving Feeding Skills and Speech Clarity Using Oral-Motor Therapy." I'd revisit this topic later.

Throughout the entire conference, there were exhibits set up in one large room so that you could check out all kinds of things. Want Sure Steps, Specs 4 Us, info on the new Gigi's Playhouse opening up in San Diego soon? All there. And much, much more.

At 3:30, I went to the Sharing Session called "Mothers Only, Birth-2 years" which was hosted by Kathryn Lynard Soper, editor of the much-loved-by-me book Gifts and author of The Year My Son and I Were Born. I found it very fulfilling to be able to tell her, in person, how what she'd helped put together and written had touched me.



The room was full, all seats taken, and we started out by creating a list of things we'd most like to talk about. There was no way we'd be able to press through everything in 1.5 hours, but it was nice to try. We were the epitome of "Ds crosses all lines" as there were as many unique stories in that room as there were women. Later on, I'd learn of a cruise called "Moms Need Moms" and if I could swing it, I totally would. We need that kind of time.

All too soon, it was time to head down to the Opening Session. I was looking forward to the "We're More Alike Than Different: Self-Advocates Speak to the Nation" portion and I wasn't disappointed. Tell me more about how you live independently, work, drive, have a college degree, are getting married, or - best of all - are single now and available! Gotta love Eleanor Bailey, a student in Portland State University's Transition Program, for making the most of her time at the mic.

To close out our long day, there was free food an Opening Reception. It was a great chance to eat free food catch up with our more local Ds support network. I wish we all lived closer to one another because we have some really cool families in our group.

...
...
...

I can't believe I thought I'd get everything in one post.

Stay tuned for Part II. I hate when I have to do that. Bah.

SacTown

We're just wrapping up a pretty nice weekend over here, but before I can talk about that, I must take the time to acknowledge last weekend.

Last fall, Sheree and her family came to visit us. We had a great time chatting and going to the aquarium together. It was so nice that we promised to get together again.

And then life happened.

Next thing you know, it was May. I was bummed that we'd have to miss Gabby's birthday party since I was going to be away for reserve duty. When Sheree and I spoke, we made tentative plans to just pick a weekend in June and make it happen. And make it happen we did.

Early on Saturday morning, BD, Playette, and I piled into the car and began our trek.

When we got there, we were met by some of the most hospitable people ever. They immediately made us comfortable, told us to make ourselves at home, and meant it.

After playing with the kids for a while, we drove into Sacramento for our first activity of the day. I was very excited to meet Lisa and Monica, moms to Sheridan and John Michael, respectively. Monica also brought her lovely and helpful daughters, Anna and Greta.

The kids were so adorable, the day was beautiful, and the company was great. All moms of little ones with Ds (from 9-23 months), we shared ideas, answered questions, talked about the upcoming conference, and more. It was a great experience for me and I look forward to seeing them again soon.



After leaving the park where we had the playdate, the fun continued. Can you say "ice cream sundaes"? Mmmmm.



We weren't back at the house long before we were joined by Sonia and her family. None of us had ever met before, but Sonia and I have the Navy wife thing in common (plus, her husband is a Submariner, something BD can relate to).

So, now we've got a house full. 6 adults, 6 kids. The littlest ones were our three princesses, all at different stages, yet still a year old. It was so amazing and they were so sweet.

I got all mushy at one point when I looked at them. These girls are beautiful. Really. And I was overcome with the thought that people are afraid to have babies just like them. And then I thought of how wonderful it was to just be.

I mean, a lot of times when I'm out with people whose kids don't have T21, I wonder what they're thinking. Are they silently thankful that they're kid isn't like mine? Are they wondering why she isn't talking? Why is she so small? And if I haven't told them about her diagnosis, are they nervous about asking me?

You know, that kinda stuff.

Well, in this group, I didn't have to worry about that. Not one bit. I was relaxed. I was enjoying the moment. And it was great.

So I cried.

Sorry, y'all.

When I pulled myself together, I couldn't help but notice how grown up my little girl is becoming. She was enamored with the older kids and kept wanting to hang out with them.

Where's my baby?!

Oh, wait. There she is. Dunking.



I've been sitting here trying to figure out where all my pictures went and then *bam* it hit me. I was so busy coveting Sheree's camera, that I hardly picked up mine at all. Ha! Lucky, Sheree. Now she has a SD card full of artistic photos of things like Chick-fil-A nuggets.

For some different perspectives on that day, check here:

Lisa's post

Monica's post

Sonia's post

On Sunday, we woke up to the smell of this stuff called "breakfast." Have you heard of it? Apparently, it doesn't just come from a drive-through.

Sheree made us breakfast, y'all. You know I didn't want to leave, right? And she helped me make the Pumpkin Pound Cake I've been dreaming about since December.

*swoon*

Then we went shopping at a discount store.

*be still my heart*

We are so going back.

If they'll have us.