7 Days Old

Because we watch way too much Nick Jr over here, I can't get this song out of my head.

Every day, it's "Oh, look at me, I'm ___ days old!"

So, yes, what that means is that our newbie was born last week. Finally. At 41 weeks + 5 days gestation, Dez came into this world like gangbusters. He was just over 9lbs and 22 inches long. He's got the largest hands and feet. He's so alert and reminds me of a much older person. He's flipping adorable.

I would have to tell you the whole story for it to make sense, and I will, but suffice it to say for now that things went just a leetle away from the plan in order for him to be born.

And by a leetle, I mean "almost as much as they possibly could."

But I'm happy with the outcome.

And so very, very grateful.

It's a totally different experience, coming home with a kid that you're not staring at, waiting for any sign of heart failure because it sounds sooo horrible and you don't want to miss it by accident.

Yeah. I haven't been doing that.

I also haven't been crying non-stop, paralyzed with fear about when the other shoe was going to drop.

He's passed every screening, so all those trips back to the ENT and Audiology with a newborn haven't proven necessary.

We haven't had to brave two hours of sweat-drenched freak-out (mine) due to hearing screams like I've never heard before (hers) at the Endocrinologist's office, trying to squeeze out enough blood for a CBC. No waiting for a doctor to come find an artery. No decision to be made about whether or not to stick a needle in the baby's scalp.

No geneticist, no social worker, no staying up all night trying to figure out on my own what "EI" means and how to get connected to it.

There have been "Congratulations!" instead of "I'm sorry."

I haven't lost any friends so far that I can tell.

It's quite bizarre.

Sleep deprivation? Check.

Sibling adjustment issues? Check.

Mom guilt? Check.

Icky and painful childbirth recovery symptoms? Check.

All that delightfully boring, run-of-the-mill stuff? We're going through it.

But I can't help but think of all that I missed last time.

How scared I was then as compared to how happy I'm allowed to be now.

If you've been here, you know what I mean.

If you haven't, I appreciate that you're here and learning.

Next time, I'll share some pics or something. Today was more a day of reflection.

Again, I'm grateful. For all of it.

Without the cloudy days, you don't appreciate the sunny ones nearly as much.

Feeling Chatty, Pt. 2

I had a pretty crappy day yesterday and, unfortunately it was related to my being pregnant. I must always first clarify that it's not baby related. My issues are emotional, not physical, and resulted from my having an appointment with someone that just plain didn't know how or feel like being compassionate at that moment. It was pretty bad, y'all.

And I've been reminded, yet again, that I really don't know enough about the wee babe to say whether he's ok or not. I just simply don't know. I'm waiting to see how things go. Which, ironically, was what I was planning to talk about next: my choices related to prenatal testing (PNT).

It's strange going from one pregnancy/child that was so heavily monitored to one that I'm just supposed to, based upon my own decisions, let be.

[We did not have a prenatal diagnosis with Playette, but she had decels in her heart rate that became evident when I went to the hospital for a high fever and ended up receiving twice-weekly non-stress tests and fluid checks throughout the third trimester.]

The last time I had a look at him (him? - I guess), the newbie, was almost three months ago. I'm just supposed to trust. I'm not sure how to do that, exactly. I mean, I've already been on the other side. Being surprised. That didn't work out well for me.

But before about a week ago, I was fine with this. So I do realize that I had a hand in this fate. I just never thought that I'd start freaking my freak near the end.

Am I afraid of Ds? No, not really. When you know better, you do better.

Would it kinda rock my world if he had it? Hell yes. Not like before, but Ds is not what I'm hoping for, honestly. I'd really like to give 46 chromos a try, if that's ok. I also know that that guarantees nothing.

I know that there are people in the world who are quite sure that they know my position on PNT. For some, the fact that I'm 35 and have already had a child with Ds is enough to make an assumption that of course I'd only be being responsible to seek more information. Or, you know, make sure that it didn't happen again.

And that's totally ok for some. I don't fault my fellow Ds mamas for requesting some peace-of-mind in the early (or later) days of their subsequent pregnancies. We're all part of a club that you just can't understand until you've been initiated. You're no longer naive, as much as you would like to be. You can't turn off the part of your brain that wants to remind you that things don't always work out the way you think they will. And you also have been exposed to a world where Ds is far from the worst thing you can ever conceive of...you now get it when people call Ds "the Cadillac of disabilities."

I also don't give my friends that have chosen to adopt another child with Ds the side-eye. There's room for all of us and I can see why they love their babes to pieces.

Bottom line: I declined everything. So much so that I felt off going in for the 20-week ultrasound. I felt like, "If I didn't want to know anything, how does it make sense that I'm walking knowingly into a situation that could tell me something?" It felt hypocritical in a way. Like the two positions didn't match up.

Again, I'm just talking about my own personal situation. And I didn't start to question the ultrasound until maybe a day or two before it happened.

But I did it. We did it. And everything was "fine."

No follow-ups.

Strange. For me. I live in the land of See You Next Time.

And this time? There was no Next Time.

Which was good. But still strange.

Please also know that I believe that the 1% additional "risk" they offer to people like me, in addition to that associated with my "advanced maternal age", is a load of hooey. 1%...1 out of every 100. Not possible. I've heard of spontaneous, random Ds reoccurring biologically in a family, but it's far, far lower than 1% of the time.

Anyway.

That brings us full-circle to what I had been planning to talk about when I mentioned that "something really interesting happened...[and] it wouldn't be brought to my attention for many months."

You see, I read Alison's blog and she had mentioned conducting interviews with people as part of a research project that she was doing on PNT (she still is, by the way, in case you're interested).

I was all in. I am an open book. Pretty transparent, actually.

Our phone interview took place in July. Right before I got pregnant. So, while I was running my mouth, I had no idea what was about to happen.

She followed up with me in December, after I announced my pregnancy on this here blog. She asked me some questions and then...she asked if I was interested in hearing some of what I had said five months before.

Wow. The timing was just...wow.

I couldn't resist. Here's the part of the interview that related to this topic:

I really honestly don’t even know what I would do if I was faced with that now, because it’s like I know just enough to be dangerous, but I don’t necessarily want another child with Down syndrome, but I also realize that it’s not the life change that I thought it was.

I’ve gone back and forth on what would I do? I don’t know that I would have a CVS or a triple screen or a quad screen because I still believe that they are—that there are a lot of unknowns and if I had the amnio, I don’t know—would it be for peace of mind? Or would it be—I don’t know what it would be for, and I would really need to know what I was doing it for before I did it. But I couldn’t imagine looking at my child and saying that I didn’t want another one like you.

I’m not naïve anymore, so walking into another pregnancy, a second one, or any subsequent pregnancies, I would be –I couldn’t just be happy-go-lucky about it because I would wonder. You know, there’s a million things that could go wrong. And Down syndrome—as much as they try to make it seem, at least for me, like the worst possible thing that could happen, it’s not. So, you know, did I just get off easy? I don’t know.

Full disclosure: I read this when she sent it to me over six weeks ago and then not again until I just pasted it here. Any similarities to what I wrote today are purely coincidental. It's not like my memory can be trusted, so this is just real stuff here, folks.

It's a complex set of emotions and thoughts, and run-on sentences and question marks come with the territory.

It's not just a black and white issue with me.

I wish it were sometimes.

I do feel very fortunate to have these thoughts documented though.

That, I do know.

And I love this little inside my big, brown belly to pieces. Regardless of anything, I can't wait to meet him.

Or her.

Whatever.

No guarantees.

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.

=====

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. :)

Loves It

More on Jamie and DeOndra

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,

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.

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.

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.

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.

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.

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<--

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.

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.

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.

I know, I know, but still...

In what was probably the early 80s, I recall watching an episode of Donahue. The topic was surgery that would correct one's vision. I remember being riveted, swearing that one day, absolutely before I got married, I would have this done. There was no way I was walking down the aisle in glasses.

Always a thinker, I decided in my approximately nine-year-old mind, that by the time I was ready, enough time would have passed to ensure that the procedure was safe.

It would be many years later, but when the opportunity arose, I bought myself some perfect vision. 2003. I beat my self-proclaimed deadline by almost 3 years.

And that's how much I hated my glasses.

I say all of that because, as shallow as it may sound, I really, really didn't want my daughter to have to go through those feelings.

I've stated before that I know what it's like to grow up Black and female. In a lot of ways, that's difficult enough in my mind. But I don't know what it's like to also have developmental delays and a diagnosis that's written all over my face.

I don't know...it's little and common and silly, probably, to even devote this much thought to the issue, but...it's just one more thing to add to the pile of reasons for people to look at/treat her differently.

Today, after three hellish hours in The Most Popular Opthamologist in the World's office, we came out with a prescription.

And I ordered my baby some glasses.

I'm not normally mushy about a lot of milestones, but this one got me. It didn't feel good. I felt like I had let her down. She's not quite four. It's so early. I'm the one who passed this on to her. guiltguiltguilt.

The doctor showed me what her vision is like untreated. Ugh. Why didn't we know sooner?

She didn't want to try the frames on and I didn't blame her.

But we did the right thing and in two weeks or less, her world will be that much clearer.

Gag.

#shallow
#movingon

Preventive Maintenance

When I was in college, learning how to operate and repair massive ship engines, I'm pretty sure that one of my textbooks had this same title.

That was such a lifetime ago.

But what's interesting is that, even though I surely do not remember half of what I once learned, the principles still apply today.

I always think of that parallel whenever we take Playette to see the Pediatrician or some specialist. Almost every time we have an appointment, it's not because she's sick. It's just preventive maintenance.

There's a list that parents and doctors use when it comes to kids with T21. It's a reference guide of what needs to be done and when. We all know the deal, more or less.

Thyroid checks regularly, along with CBCs (I always ask for a "manual diff", which makes medical professionals think that I'm one of them, but really I just heard it said when Playette was a newborn and it stuck with me).

Then there are neck/spinal x-rays for AAI as well as tests for Celiac Disease that start at about age 3.

Most of us find it pretty typical stuff to see a Cardiologist, Endocrinologist, Audiologist, Ophthalmologist, and ENT, even if our kids aren't showing symptoms of anything.

It's just what we do.

So, in that vein, it was recommended that we get Playette a Sleep Study. Now, you may be wondering, "Haven't you done that already?" but no. That was a Swallow Study. Twice.

Orrrr you may be thinking of the non-sedated EEG we did more than two years ago. Similar goop in the hair, but looking for something totally different.

This most recent test, which we have attempted to have done in the past and never really got there for one reason or another *coughINSURANCEcough*, came about after the last ENT visit where it came up, again, that Playette snores and fidgets in her sleep. In and of themselves, not such a biggy, but when you add in that extra chromo, it means that a sleep study is in your future. Sleep apnea is not uncommon in the Ds community and you can also get info that may lead you down the path to a Tonsillectomy and Adenoidectomy (T&A).

So that's what we did, as a family, on Tuesday night.

Because we're all about being miserable together.

No one escapes.

It wasn't too bad, actually. I mean, we were all sleep-deprived the next day, but there are much worse things.

We got there at 7:30pm and left at about 6am. It took some time to get the machines or whatever (I have no idea since they weren't in the room with us) going and then more time to stick all the electrodes thingees all over Playette's body.

It was kinda like watching the making of Thriller.







She was much more agreeable than I expected and we were actually glad that we did it now, when she could be amazed by the process and not just 100% irritated. She did try to take the one off of her foot for a while and the final straw of sticking something up her nose was met with some distaste, but all-in-all? Not horrible.

Even though, personally, I thought she looked hilarious. I wish I had gotten a picture before the hole was cut out over her face. That was classic.

Playette seemed like she was ready for bed at just the right moment, but that didn't last. It was if, all at once, she remembered that she was in a new place and there was no way she was going to sleep through the party.

Even though that was kinda the point. To sleep.

BD and I tag-teamed until she finally passed out.




And then something in the room set off my hacking cough so BD made me get up and take the other bed while he took my place sharing the one with Playette.

Because doing this once is one thing, but doing this twice? Uh-uh. We weren't trying to go out on a technicality.

This one is going in the books as a mission accomplished even though the results won't come back for a couple of weeks.

=====

For those that wondered, the second hospital visit that morning was for me. Just an appointment. Nothing to be concerned about. BD had taken the day off so he was lucky enough to sit through it all with me.

Another Fight

Do you know about Kirill?

Chances are, if you're a fellow Ds blogger-type, that you do.

If not, here are the basics:

Kirill is a little boy currently living in an orphanage in Russia. He has a family that loves and wants him very much. They went through all of the proper steps to bring him home only to have a judge tell them no in the final moments.

Hear me on this.

After the parents-to-be sat in court for hours, the judge determined them fit to adopt as a family, just not for Kirill.

Because, according to this judge, he's defective.

And he belongs in an institution.

Not with a family.

Read the whole story here.

I've said this for several situations over the past few days and I'll say it again.

WTF IS WRONG WITH PEOPLE?!

So. Of course they're appealing this decision. But it will cost them a ton more than they had originally anticipated. With that in mind, a group of friends set up a way to help raise funds for this specific purpose. It's going amazingly well.

If you're able and interested in helping them reach the ultimate goal, please click here.

Each $10 donated gets you a shot at a long list of prizes. Want a new camera? How about a $500 gift certificate to B&H photo? Always had your eye on a Flip video?

Now might be your time.

There's no pressure and I won't hate anyone that doesn't participate. I just felt compelled to share something that has touched my heart.

Easy Peasy

Ok, so Patricia Heaton, the actress, has vowed to donate $1 for every new Twitter follower of Reece's Rainbow up to $10,000.

Forget the politics, if you can, and click the button to help save the lives of some wonderful kids. Every dollar counts.

If you're not on Twitter, it's a very simple sign-up. If you need help or have questions, let me know.

Reece's Rainbow: @reecesrainbow

If this message inspires you to sign up and you just can't get enough of me (gag), I'm on there as ctevia.

3-2-1

Today is World Down Syndrome Day. It's a time to acknowledge all the folks out there sporting the 21st chromosome in triplicate, like Playette.


One of my goals with this blog is to increase positive awareness so that my daughter and all of her friends and all of those that have come before and after her experience just a little bit more understanding of their place in this world.

Because they do have a place.

====

And, just because, here's my post from 3/21/2009.

FAQ: The things you may have wondered and many have asked...

How old were you when you got pregnant/gave birth to Playette?

I was 30, just two weeks shy of 31 when she was born.

Has Playette had any health issues?

Some things here and there, but nothing serious. She's been a pretty healthy kid and we're very grateful for that. To date, she hasn't had any surgeries. While we've had more doctors appointments than some kids her age, mostly they've just been to follow the Ds protocol (check on this, make sure of that, etc.). While she does have a congenital heart defect (a small ASD), everything is fine right now. She's also been cleared by Endocrinology (previously, she took 25mg of Synthroid daily for hypothyroidism).

We began to thicken her liquids in late 2009 after finding out that she silently aspirates via a swallow study.

When did she walk?

She was 20 months old and was motivated by Cheerios during a PT appointment. I never expected it to happen that early and she hasn't stopped moving since.

When did she get her first tooth?

Late. As a matter of fact, the first one popped through just before she started walking. She's still missing a couple of obvious ones in the bottom front.

Flippers, anyone?

Did you all participate in Early Intervention?

Yes. Playette started PT at about six weeks old and had it weekly until she was 5 months and we moved away. After that, we had PT, OT, Speech, and Aqua therapies on a really random schedule. Sometimes it was a lot, others it was hardly anything. It was all about trying to get as much as possible in the beginning and then once we realized that we needed to strike a balance, it tapered off.

I wish I would have spent more time enjoying my baby though. That I do know. You don't get that time back.

What has been your experience with childcare?

Playette was home with me until she was 7 months old. Since she has no siblings, I went through a lot of emotions regarding whether I was going to be able to do enough for her (poor New Mama me) so when the opportunity opened up to have her in daycare, we went for it, hoping for good peer models. It worked well for us and I went back to working full-time soon thereafter.

When we left California, Playette started half-day Pre-K and is now home with me for the rest of the day. It's not our ideal situation, but it will have to do until something better presents itself. Our goal is for her to be included with her peers.

Did you use sign language with her?

Absolutely! Still do. We started at about 9-10 months (too bad I didn't blog back then so I could confirm) and it took her a while to use her first sign meaningfully. I'm glad we didn't give up because now she uses ASL so much to bridge the communication gap and she knows way more signs than we do. We estimate that she knows about 300. It could be more but she knows more than we do so it's hard to say. We swear by Signing Time.

I'd love for Playette to be an interpreter some day. Time will tell whether or not she wants that for herself.

Why didn't you blog the first year of her life?

Frankly, I was a mess. It took me a while to come to grips with Playette's diagnosis. Those first few months were a scary time. I didn't even tell many people at first. I just didn't know how. I had read that people take their cues from you so I didn't want them to have pity on me, which is what I thought would happen if I burst into tears while delivering the news.

So, with that in mind, I stayed quiet pretty much until her first birthday. The blog was my way of squelching the fear and providing some disclosure. It's been a therapeutic process.

But how could you have been upset? Didn't you know that all people with Down syndrome are special angels only given to special parents?

I've heard that. A lot. But I prefer to think of my child as an individual with strengths and needs like anyone else. Receiving her diagnosis did not make me happy as it was, at the time, made to seem like the worst thing that could ever happen in a pregnancy. I know now that is not true. Far from it.

Still, she's a kid that I adore and drives me batty on a regular basis. She's special to me, but not special-special.

Was she diagnosed prenatally?

No. The on-call Pediatrician informed us of his suspicions that she had Down syndrome about 12 hours after she was born.

But she doesn't look like she has it. Are you sure?

Yes. We're very sure. With our permission, blood was taken from our newborn daughter and a karyotype was done. The diagnosis of Trisomy 21, regular old random Down syndrome, was confirmed several days later. Playette has 47 chromosomes, one extra 21st in every cell of her body (we assume), just like 95% of people with Down syndrome.

What about the other 5%?

They either have translocation (two 21st chromosomes plus extra chromosome 21 genes attached to another chromosome) or mosaic Ds (additional genes from chromosome 21 exist only in a portion of the body's cells).

But what about prenatal testing...shouldn't you have known she would have Down syndrome?

I was a nervous first-time mom with access to the internet and lots of time on my hands. Since I never imagined that getting pregnant would just happen for me based on my own health issues, I was convinced from the get-go that something was amiss. I was told over and over (very irresponsibly, I might add) that I was young and nothing in our family history would make it likely that our child would be born with any issues.

With that in mind, plus the fact that the tests that were available at the time were fraught with false positive and false negative results, I abstained.

In the end, I'm glad I didn't know. I think the timing of the news is just the way it needs to happen for each family.

You must be thrilled that she's so high-functioning!

I don't tend to think of her like that. I think that a lot of people just don't understand Down syndrome and the wealth of potential that the people that have it posses. So when they see someone, my child for example, doing things that other children their age do, they're shocked.

Unfortunately, the treatment of people with Down syndrome has not always led to them being able to live their best lives. For many years, people with Intellectual Disabilities were put into categories: trainable or educable. You had to be at a certain "level" to even be given the opportunity to learn.

So, yeah, I get it. People don't know. That's part of the reason why this blog is here. So that we can help to show how the stereotypes and reality differ.

And since I don't go around saying that BD, for example, is more high-functioning than I am because he has an understanding certain math concepts that I don't possess, I won't make those types of of comparisons to my daughter's intellect.

Has having Playette limited what you do as a family?

Not at all. I mean, there are definitely things that are more difficult, but those are moreso related to dealing with ignorance and having to fight for equal rights. Previous generations did that for me, so it's not a foreign concept.

But when you look at our day-to-day lives, we're just an average family. Or something. I don't know what the average family does, but I figure we're close enough.

At the age of 3, Playette has already been to 14 states and Washington, DC. She has experienced both Disneyland and Disney World. She's visited Mexico twice and Costa Rica.

Having her hasn't slowed us down one bit.

(And just to have it all in one place for my future reference, the states are MD, VA, GA, AZ, CA, NV, KS, NY, DE, HI, TX, FL, WI, and PA. Too bad I won't let an extra long layover in IL - where Playette and I met Smokey Robinson - count. We'll just have to go back.)

Why do you move around? Doesn't that make it harder on you regarding schools and building a community?

BD is in the Navy. We go where he's sent, for the most part. It is more difficult, but we're not the first to go through it and we won't be the last. Thankfully, there are lots of other helpful military families out there and we support one another as much as possible. And the people that live inside my computer can go wherever we go.

Also, there are bonuses. Like no co-pays.

I'm nervous about meeting other families who have a loved one with Down syndrome. How do you know so many people?

I've reached out. I wasn't always like this. I used to be nervous, too. That whole first year? You couldn't have paid me to go to a conference or a Buddy Walk or even a playdate. Now, I relish it. Being around people that "get it" is like nothing else for me. I don't have to teach or explain. We can simply BE. I've made lots of friends from all over the world.

So, jump over to some blogs and read along, join your local parent support group and participate. It may be just what you've been looking for.

But, if you're not the social type, that's ok, too. You'll find something that fits your lifestyle.

Why does the word r*tard(ed) bother you? It's not personal.

It is to me. When used as slang terminology, it is never in a positive way. Typically, it's the butt of a joke and always has a negative connotation. MR is part of my daughter's medical diagnosis so every time the stereotype is perpetuated that she is less-than, it hurts my heart. I also cringe when I hear "special" or "short bus" jokes because it's the same principle.

Why do you go by nicknames?
I love the interweb and all, but it just makes me feel better.