BD's Annual Update: I Swear He Wrote This on His Own (and I didn't pay him)

Okay so last year Halloween took place on Freaky Friday, but this year Halloween’s on Saturday and football’s on all day so…I wrote this on Thursday.

Like last year I’m going to ramble on about some stuff and hopefully it will all come together.

We’ve come a long way in the last year. Playette went from crawling to walking to destroying everything in her past. The momma went from worrying and not taking care of herself to relaxing, working out and running (way more than I ever want to run!). I’ve gone from quiet giant to still quiet yet more outspoken than before giant. It’s a process that takes time, but I’m trying to get better.

Life has been good to us, Playette is healthy and the momma and I are getting stronger and more in synch as a married couple every day. It’s funny to think that we’ve only been married 3 years, because of all the things we’ve been through in that short time.
I’m enjoying the journey and I hope she is too. We’re not the perfect couple, but I think we thrive because of our abilities to fill in each other’s weaknesses.

I’m so proud of my wife and all she’s done in the last year. She’s fought through some terrible circumstances before we met to become this incredible woman and has battled back from what was at first a crushing blow in Playette’s diagnosis. She means everything to me. She is my heart and soul. Her actions over the last year have been very motivating. I’m supposed to be the disciplined one, but she has it all together. Getting us scheduled for all of Playette’s appointments and social events, working a full-time job, and being a great wife and mother are just some of the things she is juggling well. She has also found the time to start running and dieting! She’s really getting it done. That’s because she’s a rockstar…the F’n best!

It’s Thursday, so there is football on which means I gotta go, but I just wanted to let you all know:

I LOVE MY WIFE!

Even more than football, but don’t tell her that, because it keeps her on her toes.
Happy Halloween blog peeps.

Kristi's Annual Update

Remember the "In Their Own Words" series from last year?

Well, Kristi participated back then and decided to submit an update on her perspective.

It's hard to believe that it's already been a year since we went trick-or-treating in Kansas.

Kristi maintains a blog over at Southeast of Disorder.

Thanks, friend!

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It’s been a year since I last wrote on Chrystal’s blog…time sure flies and man Malea has grown leaps and bounds and so has her Mom.

Last time I wrote the pair was in my town for a work-related visit. It was fantastic and I wish we had one planned for this year, but we don’t and that is life when we spread out all across the country. I still miss them and love this blog, phone calls, and of course photos of our favorite two-year-old.

What have I seen from my corner of the world? Well, I have seen a family grow more confident in what is. Chrystal and Dwight don’t accept DS as a limiting factor and, as a result, it doesn’t limit their family.

Yes, Malea may be clinically behind her peers but let me tell ya, she has reached a million milestones, just in her own time, over this past year. If she came for a visit, I would have to cram because she passed me long ago with signing. Plus, we wouldn’t want to repeat the “more shoes” thing when I was trying to say “more milk.”

I think that is something key to point out to anyone out there just entering this world and to their friends. Your child will indeed achieve just like any other kid just on a different time schedule. So, try as hard as you can to flush all those negative comments the doctors and well-meaning people make down the toilet. Your child and your family will move forward and you will surprise yourself with your strength, resolve, and ability to handle this change in direction.

You will find other mothers who truly understand and you will solidify friendships with friends who will make every effort to “get it.” You may lose some friends/family members, but it’s just their true colors shinning through. In my opinion, you never needed that baggage in the first place and you’ll learn to handle the loss.

What have I learned from my friends and my amazing niece this past year? Well, first and foremost, I am not afraid to have a child past that "dreaded" 35-years-old mark, where my Doctor tells me I am at a higher risk for having a child with DS. I find the conversation with my Doctor absurd. Maybe that’s wrong of me. I don’t know. A very unique part of me wants to be in the club. Call me crazy.

Let me clarify. I would never wish anything on a child that makes their life more difficult, but I don’t feel DS is a horrible thing. Does that make any sense at all? Basically, my point is that I don’t have a fear or a clock ticking down in my head anymore and that sets me free. Now I am still scared to death of the birthing process, but what do you expect? I am no saint.

I have also learned the power of the R-word and how it needs to be addressed. I still screw up, even around Chrystal, which truly breaks my heart when I do. It is so embedded into slang in the Midwest that it makes me ill. However, I make the effort daily to erase the word and to explain to others why they should as well. Yes, it doesn’t affect me as directly, but does that matter? It’s offensive and it’s rude so have some class, make the effort, and if you slip up admit it, apologize, and work harder.

All of this makes me wonder where we all will be a year from now and what we will learn…hmmm

Push-Up Contest

She's Made of Awesome

As if you didn't already know.

Have you seen her?

Tell me, have you seen her?

I can't help but want to compare this pic to the one from last year. She's losing the baby chub and becoming a big girl.

Looking at all of the pictures in all of the galleries...it makes me feel good. I know that Playette has plenty of peeps sporting 46C, but there's something about seeing more kids with 47.

I like knowing that she's not alone and that there are tons of other Littles coming up with her, all around the world, busting down doors and showing people what they're made of.

More tomorrow on what Playette is made of...

Goal Chasing

You know what's kinda sad/funny?

Amongst the people I've known in my life, there is a faction who, if asked to name the first thing they think of when they hear my name, would say that I'm a pathetic runner.

Seriously. It's part of my legacy.

When I was in college, during our Indoctrination period, I couldn't run from the grinder to the flagpole. This picture? Is taken on the ginder. That tall thing right in front of it? Is - you guessed it - the flagpole.

Six times, six!, over four years, we were required to run the PRT (though our regulations were much more lax back then, apparently). Every single time, I freaked out at least a month in advance, scared of failing, scared of coming in last. Usually, I did. No matter how much I told myself at every stop sign that "stop means go." I was awful.

So, all of that to say, running has never been my thing. In fact, it's been my anti-thing.

I've always wanted to be good at it though. It was just that thing that I couldn't conquer that was breathing down my neck, mocking me.

I tried to tell it about itself, but I never stuck to it.

This time, though, I'm making progress.

This past Saturday...I ran a 10K.

6.2 miles.

All by myself.

I kept going.

I finished.

I did my personal best.

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While BD drove, I took in the scenery. Hokey or no, it's hard not to be inspired when it feels like you're soaring above the clouds.


Here I am getting ready. The iPod crapped out about 7 minutes into the race, which forced me to enjoy the beauty of my surroundings. Imagine that.


The Littlest was there to cheer me on.


At the starting line. Super. Nervous.


The newbie pats down her bib. "Won't it fall off?" she wonders.


Mile 2 coming.


Mile 2 going.


All done!


Maybe I would have gone faster if I had known there would be popsicles at the end.


FNPT is one patient woman. She's been encouraging me for many months.


Check out my blue ribbon.[/cheesy smile]

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?

Looking Back: If I Could

Another Saturday, another look back at a past post that left some sort of impact on me. I received quite a bit of feedback on this one. It's just one of those topics, I guess.

If you don't have a kid with a diagnosis, it's hard to explain. Perhaps you think that you'd take anything away that makes life more difficult for your child.

"Really," you think, "what's there to consider?"

Well, a lot, actually.

There are many, many parents of children with special needs who wouldn't change a thing.

Perhaps one day I'll stand among them. For now, though, I still identify more with those on the flip side of the coin.

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

Originally written March 18, 2009.

Ok, so I'm already tearing up.

Lisa's last post struck a chord. And then I read Wendy's response.

I know how I feel, and I'm sure about it, but then I feel bad. Guilty, really. What is it that's not allowing me to let this go? I mean, I completely understand it from the mamas earlier in their journey. Just thinking about the first year brings back a whirlwind of emotions. But I'm supposed to be in that happy place now, right?

Crap.

Like Lisa, I've heard over and over and over again from other parents that they wouldn't take away Ds from their child if that were even possible. I've always responded with an incredulous "Really?!"

Because I would.

If I could.

I know it's a pipe dream and it's not something I focus on or pray for or really even think will ever happen. Ever. But I do visualize sometimes. I wonder what Playette would be like without Ds. In my mind, she's still the wonderful, fun, beautiful little girl we've come to know and love, but she walks. And talks. And her tongue doesn't protrude. And we have no therapy. And...well, she does the same things her typically developing peers do and she's so "normal" that she doesn't warrant a second glance for anything more that simply being a cute toddler.

People wouldn't ask how old she is and then get a confused look on their face after being told the whole truth.

And maybe I would tell them her age in months (even though I said I never would when I was childless) instead of years. I know saying "1" is a lie simply because I'm omitting the details that they're really after. I'm knowingly letting them think that she's closer to 12 months than 24 so that I don't have to deal with what comes next.

There would be no IFSPs.

There would be no trying to educate my family, friends, and co-workers about all things "special needs" and then opening myself up to ridicule and possible alienation.

I know there are good things that have come from being ushered into the Ds community. There are all of you that are a part of that community with me. The people that read about my life just as I read about yours on a regular basis.

There's an openness and a freedom that I didn't have before.

I probably wouldn't be so friendly with Arthur, the 30-something year old man who works for Hope Services at both my job and Playette's daycare. I seek him out. Ask him about his day. His life. And I really care about the response.

I'm real enough with myself not to think that I would have just up and decided one day to change my ways if not for Playette's diagnosis being a factor.

Yes, the blinders have been removed.

I notice instead of pretending that I don't.

But, I swear.

Today.

If I didn't have to think about Playette's peers climbing around playgrounds and building the muscles in their chubby little legs that they've been walking on for a year or more already? I wouldn't.

I realize that time does heal though. Last year this time, I would have broke into tears or at least had some sort of anxious moment when Playette's daycare director made such a big deal about her taking 12 steps 3 times today in front of another family whose son is almost exactly her age. (Back then, I was all about no one knowing that didn't need to know. I've never addressed her diagnosis with them, but if they haven't caught on in the last year +, then I'm 100% shocked, especially since the dad is a doctor.)

I read the other day about another of Playette's peers who has mastered jumping with two feet and I was all, "Wow," and then, "I've heard jumping is going to be difficult for my kid."

Jumping.

And we're not even getting into the future. I have done myself the favor of not thinking about that too much. (So, yeah, I do think about it a little.) School. Bad touches. Stranger Danger. Real friendships. The effects of constantly moving around as a military family...

So maybe tomorrow/next month/next year I won't feel this way.

Who knows.

And if you've made it this far and still wonder why I teared up tonight, and feel like being a little mushy yourself, check out the lyrics.

Because I would.

If I could.

Behind the Scenes

A couple of weeks ago, I reposted my "R word" essay from last year. That reminded me of an email exchange that I had with my friend, R, this time last year. With her permission, I'm glad to share it with you here.

This means a lot to me now, just as it did back then. The fact that she took the time to write to me was huge. She didn't have to do that. It just reminds me that you never know who you're going to reach with your words. You never know what kind of difference you can make, one on one. It sounds sappy, which, if you know R, you know she's the anti-sap, but it is what it is. And a friend is a friend. Friends will hear you out. They may not agree with you all the time, but they'll listen. They'll process the information and reach their own conclusions. I think that's what we all want, right?

Personally, I don't feel this particular scenario could have gone any better.

Oh, let me stop rambling so you can read it.

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To: C
From : R

Hey chickie!

I just wanted to tell you how much I've been enjoying reading your blog and learning more about D.S. Also, I've been meaning to send you a message to tell you something for the longest time now but, whenever I'm at work and actually have access to a decent computer, it always slips my mind.

I was really moved by your blog post last month about the word "retard". I'm 100% guilty of using that word a lot. I've never used that word in reference to someone who is developmentally challenged, I've only ever used it to describe people who are idiots. To me, there is a HUGE difference between someone who is developmentally challenged and someone who is "retarded". So, of course, in my mind I never felt like I was doing anything wrong because I didn't use the word in the same way other people did. Anyway, after reading your post, it made me realize that, it didn't matter that I was using the word in a different way, the word itself is hurtful to people, regardless of the context. And I felt horrible and ashamed after reading that post. So, since then, I have been making a conscious effort not to use it...period!

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To: R
From : C

I know you are not mushy and making me tear up was not your goal and I don't like to look mushy either but...waahhhhhh!

Wow. Thanks for writing that. I mean, seriously. Sometimes I feel bad about things and then I write about them and I have no idea who, if anyone, even reads the stuff and to know that it even made a difference is just WOW.

I know that most people mean no harm whatsoever and I hope I was making that clear in the post, but I felt that I was doing my friends a disservice by not telling them that it was hurting me, y'know?

You're an effin' rock star.

Aw, crap. Now I'm crying.

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To: C
From : R

What are you talking about? It was totally my intention to make you cry! My work is done here. :)

I think it was great that you wrote that post. I would MUCH rather have a friend tell me that I was doing something that upset them then not say anything at all. If you're doing or saying something that you think is harmless, and you find out that it's hurting someone you care about, you stop doing it. Period. And, in this case, it was a clear case of: "Wow, I never thought of it that way before." I hate to think that if you hadn't written that post, I wouldn't have known, and everytime I used that word (most likely to describe [a group of people], I'm sure), it would have hurt you.

There was an episode of The Office where Steve Carell's character said: "You don't call developmentally challenged people retards because they're not. You call your friends retards when they do something stupid." And that was always my mindset (retard = an idiot, regardless of age, race, IQ, etc.) so reading your post made me realize that, even if I didn't use the word in the mean hurtful way that some people do, it didn't really matter. The word itself hurts people and I'm glad you opened my eyes to that.

More importantly, I'm a rock star!!! WOOT!

Best Laid Plans

When my aunt came to visit a couple of weeks ago, she pulled the most gorgeous cream-colored sweater from her suitcase. It was long, hit about mid-thigh, and had a hood. I loved it.

But you know it wasn't for me, right?

It was for Playette.

Since there's no way I could fit my big toe in that sweater, my goal became to get it on her as soon as possible. No problem, right? It's fall, after all. And where we live it's always pretty cool.

BD "called in football" on Saturday, so I decided that Playette and I would head out to the farm for the Harvest Festival. You remember the last time we went to the farm, right? I showed that salad who was boss.

Farm on a fall day. Perfect sweater weather.

First, the undershirt. Then a long-sleeved shirt. Next those cute little jeans with the butterflies (adjustable waists rock!). Then the sweater. The nice, heavy sweater. With a hood.

For myself, courderoys, a long-sleeved shirt, and a (not nearly as nice) sweater.

We were ret'ta go.

I made sure to grab the camera so that I could catch my little fasionista in action.

And then...

Geez. You must know by now that there's always an "And then..." with me.

IT WAS 80 DEGREES OUT THERE!

For us, that's like sauna hot. Our bodies have adjusted to 60 degree summer days, so 80?!

The sweater never made it out of the car.

See?


Here's some of what was going on at the farm:









I love the idea of a corn box. So much cleaner than sand. You just can't have kids that want to either eat it or shove it up orifices. Let me know when you find a kid like that, ok?


Playette? She was busy smashing stereotypes left and right.



"Always happy" my behind.

She hated the corn box.

This chick was hot and irritated and just generally not having a good time because of it. Note the absence of another layer of clothing.

This was what she spent most of the time doing:


Running away or...


...performing the pick-me-up cry.

I did get some cute pumpkin poses.




Aaand just to balance it out...


We didn't end up staying very long, really. She was just too miserable.

So we left. Again, I was jealous of her attire.



Here's the video that the farm posted of the event. It really was a pretty day. You know, if you were dressed for it and not dripping sweat down to your ankles.

Cool! Wait...Nevermind

Buddy Walk '09

The Buddy Walk was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. Today, the Buddy Walk program is supported nationally by the NDSS and organized at the local level by parent support groups, schools, and other organizations and individuals.

We went to our second Bay Area Buddy Walk on October 10th. It was a gorgeous day and this year...we had a team! Malea's Crew. Last year, it was just The Mama and The Littlest so we more than doubled our participation. WOOT!


We also had several friends and family members who were with us virtually, sending good wishes and donating when possible. Check out our ticker at the top of the sidebar. I think we've done great so far!

All money raised in relation to our Buddy Walk supports activities provided by the Silicon Valley Down Syndrome Network, a group that has served as a great resource for our family.

The best part of this Buddy Walk, though? Playette walked!

Last year, as we were completing the one mile loop in the rain, with her in the stroller, I told her, "Next year, you're walking." That was really my hope for her more than it was a command. At that point, she was 16 months old and I could only imagine when she would start walking on her own.

Check out how far she went:


I'm very proud of her 1/2 mile...she's one step close to being theme park bound. [She has to work herself up to 5 miles (with no whining, ha!) before we can all go to Disney together. Don't worry though. If we're at next year's NDSC conference together and she hasn't reached her goal yet? We may let you borrow her so that she can see the Magic Kingdom. ;-)]


And here she is enjoying the band (and the camera) early in the day:





Many thanks to Dan for taking those great photos.

BD wanted me to make sure that I added this one in. There were informational signs all along the walk.


We had a great time. I don't think we'll still be in this area next year and I'll miss this great group of folks for sure.

Looking Back: Buddy Walk '08