Showing posts with label Advocacy. Show all posts
Showing posts with label Advocacy. Show all posts
Sunday, February 5, 2012
Billboard Girl
I came across these photos the other day and I don't think I ever posted them. I'd like to place them here so that they're easier to find later on. They were taken by the NDSS photographer in Times Square, just prior to the 2011 NYC Buddy Walk in Central Park.
Saturday, February 4, 2012
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:
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.
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.
Monday, January 30, 2012
Ok, so...
I try not to blame what I feel or do on my pregnancy. You know, with the whole hormones and forgetfulness stuff.
I said try.
But if I were in the blaming mood, maybe this one would fit the bill:
You know how I asked if we should go back to gymnasstics?
I was truly, honestly thinking that we had one Wednesday left in January.
I didn't know that Wednesday is February first until FNPT reminded me of that fact.
So.
Since we got the boot effective the end of January, tomorrow, I guess that's a pretty easy decision, huh?
Plus, I have to go to a class at the Pediatrician's office that night anyway.
Huh.
It feels almost too easy.
I didn't realize that that last "Say thank you and goodnight to Ms. M," was truly the last time.
It's kinda bittersweet.
But don't think I won't be alerting our local group and writing reviews.
Because I so am.
Like I said the other day - NOT COOL.
Thank you all so much for your feedback on this issue!
I said try.
But if I were in the blaming mood, maybe this one would fit the bill:
You know how I asked if we should go back to gymnasstics?
I was truly, honestly thinking that we had one Wednesday left in January.
I didn't know that Wednesday is February first until FNPT reminded me of that fact.
So.
Since we got the boot effective the end of January, tomorrow, I guess that's a pretty easy decision, huh?
Plus, I have to go to a class at the Pediatrician's office that night anyway.
Huh.
It feels almost too easy.
I didn't realize that that last "Say thank you and goodnight to Ms. M," was truly the last time.
It's kinda bittersweet.
But don't think I won't be alerting our local group and writing reviews.
Because I so am.
Like I said the other day - NOT COOL.
Thank you all so much for your feedback on this issue!
Monday, December 19, 2011
Potpourri
My brain is a hodge-podge spiral of everything lately.
I create posts in my head that never get written.
And, seriously, what else is new?
I want to talk about pre-natal testing (PNT). Whew, that's a biggie. I've been reading an article lately. In itself, it's not long. It's the 190 comments that are taking time to rifle through. And there are some doozies in there. Some make me gag because they're just so over-the-top syrupy and others make me fear for my life in this country and wonder if the author is my neighbor or co-worker. You can read for yourself here.
The article was published back in September, but I only just now learned about it for a reason that I will discuss sooner than later. I just need time to get my long list of thoughts together. I figure that people have wondered about my position on PNT, especially now that my pregnancy is common knowledge, but they're too polite to ask. Which is cool. So I'll just tell.
In a similar vein, I had an appointment with, as my friend likes to call it, my "nurse collective" last week. I am officially 3/5 of the way through my pregnancy and the baby appears to be doing well. He moves a lot and he has a great sounding heartbeat. I feel pretty good for the most part and if I could just get motivated to find a support group like "Pregnancy after Weight Loss" I might be able to wrap my brain around this whole upward motion of the scale thing. Trust me, I know it's a necessary part of the process, but I still sigh at every weigh-in. I need to get over it.
At my appointment, unfortunately, I also had to deal with a question about Playette that made me think. It brought up the whole "educate or get pissed or both?" feelings again. I swear, as more time goes by, this isn't as clear cut as it used to be. At least I'm not so quick to cry anymore.
There's also work stuff that is out of control. Like, really. They have gone straight nutty on me. I know I mentioned it briefly back in August/September, but because I wasn't ready to talk about the babe yet, I didn't get into details about why what happened really sucked as much as it did. Suffice it to say that coming back was not what I anticipated.
I've got reserve duty coming up (which caused more drama at work) and I am already thinking of how much I'm going to miss Playette and vice versa. My girl really tugs at my heartstrings lately and every choice I make seems to impact her to the core. I hope she doesn't hate me when I get back. The one good thing that will come of this is my getting to wear what I fondly refer to as "The Khaki Tent" again. Not only will I get more of my money's worth out of this rarely-worn gem, but it's super-comfy. So, yay for that.
Also, I want to touch on infertility. That's not something I've ever talked about openly. But it's real. And that makes me even more grateful for what's currently going on with my body.
I hope you're all enjoying a wonderful holiday season. If you have any specific questions, please either post here or email me and I'll add it to the lot.
We'll be celebrating in a unique way this year and I look forward to telling you more about that, too.
Soon...very soon.
Anything in particular that you want to hear about first? Majority rules.
I create posts in my head that never get written.
And, seriously, what else is new?
I want to talk about pre-natal testing (PNT). Whew, that's a biggie. I've been reading an article lately. In itself, it's not long. It's the 190 comments that are taking time to rifle through. And there are some doozies in there. Some make me gag because they're just so over-the-top syrupy and others make me fear for my life in this country and wonder if the author is my neighbor or co-worker. You can read for yourself here.
The article was published back in September, but I only just now learned about it for a reason that I will discuss sooner than later. I just need time to get my long list of thoughts together. I figure that people have wondered about my position on PNT, especially now that my pregnancy is common knowledge, but they're too polite to ask. Which is cool. So I'll just tell.
In a similar vein, I had an appointment with, as my friend likes to call it, my "nurse collective" last week. I am officially 3/5 of the way through my pregnancy and the baby appears to be doing well. He moves a lot and he has a great sounding heartbeat. I feel pretty good for the most part and if I could just get motivated to find a support group like "Pregnancy after Weight Loss" I might be able to wrap my brain around this whole upward motion of the scale thing. Trust me, I know it's a necessary part of the process, but I still sigh at every weigh-in. I need to get over it.
At my appointment, unfortunately, I also had to deal with a question about Playette that made me think. It brought up the whole "educate or get pissed or both?" feelings again. I swear, as more time goes by, this isn't as clear cut as it used to be. At least I'm not so quick to cry anymore.
There's also work stuff that is out of control. Like, really. They have gone straight nutty on me. I know I mentioned it briefly back in August/September, but because I wasn't ready to talk about the babe yet, I didn't get into details about why what happened really sucked as much as it did. Suffice it to say that coming back was not what I anticipated.
I've got reserve duty coming up (which caused more drama at work) and I am already thinking of how much I'm going to miss Playette and vice versa. My girl really tugs at my heartstrings lately and every choice I make seems to impact her to the core. I hope she doesn't hate me when I get back. The one good thing that will come of this is my getting to wear what I fondly refer to as "The Khaki Tent" again. Not only will I get more of my money's worth out of this rarely-worn gem, but it's super-comfy. So, yay for that.
Also, I want to touch on infertility. That's not something I've ever talked about openly. But it's real. And that makes me even more grateful for what's currently going on with my body.
I hope you're all enjoying a wonderful holiday season. If you have any specific questions, please either post here or email me and I'll add it to the lot.
We'll be celebrating in a unique way this year and I look forward to telling you more about that, too.
Soon...very soon.
Anything in particular that you want to hear about first? Majority rules.
Thursday, December 1, 2011
It's Time!
What time is it, you ask?
It's t-shirt time!
You've been waiting so patiently for me to dish on what we were up to at the beach and this is it:
NDSS Signature T-shirts Are Here!
We are proud to unveil a collection of men’s, women’s and kids’ t-shirts featuring 3:21 on the front and the NDSS logo on the back.
Adult shirts are $25 each and kids’ shirts are $15 each. For each signature shirt purchased, $5 will be donated to NDSS.
Men:
Guys will love the fit and feel of this t-shirt, made from 100% cotton with anti-pilling finish. It is so comfortable it will become an instant favorite, and its subtle message will make you feel good about wearing it as often as you wear your favorite jeans (okay, maybe not that often).
Women:
The quality and fit of this t-shirt will make it the one that spends more time outside your drawer than in it, and will help you spread the word that people with Down syndrome are valued and loved members of our society. This flattering style and color options suit all sizes and skin tones and is made from 95% cotton, 5% lycra with an anti-pilling finish.
Kids:
Whether they're learning to tell time or setting their own alarm clocks, kids will love knowing the 'secret' meaning behind 3:21 and will enjoy being the one to share this info with their friends. It's always the right time to learn to accept and include someone with Down syndrome. These t-shirts are made from 100% cotton with anti-pilling finish.
Rhyme & Reason clothing can only be purchased online. Standard shipping time is 3-5 business days. Customers can use the code NDSS25 to receive 25% off their purchase and free shipping from now until the end of the year and 10% of the purchase will be donated to NDSS – this applies to any item other than NDSS signature t-shirts.
Click here to visit the Rhyme & Reason website (and see the cutest little model EVAH).
Click here to view photos of the NDSS Signature t-shirts on Facebook (if you can't see them, "like" the National Down Syndrome Society page).
And here's the newsletter, featuring another little surprise quite prominently.
=====
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. :)
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. :)
Friday, November 4, 2011
Wednesday, October 26, 2011
Three Things
1. Tricia was so kind as to share this video with me of Jamie Foxx and his sister, Diondra, (as well as others) at the Global Down Syndrome Foundation's Be Beautiful Be Yourself Fashion Show and fundraiser. How much would I have loved to have been there? A freakin' lot.
2. Gymnastics was slightly less awesome tonight as my child had a totally random and very rare accident of the #1 variety and then decided to top that feat moments later by spitting up some of her spaghetti dinner. At one point, she was walking around in a borrowed pull-up and a jacket because I didn't have any backup clothesbecause 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.
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
3. Things went fine with my friend and the young man with Ds. I guess I didn't totally ruin everything, but my info didn't really end up coming into play this time. I was assured that he'd keep everything I shared in mind should the situation ever come up again. I hope you all can understand that I don't want to violate his trust by sharing any additional details. I just thought it was really cool that he asked me and found it heartwarming that all this advocacy is not always in vain.
Sometimes, it feels like I'm always talking to people that already know and understand everything I'm sharing, which is great because I totally need the support and validation, but...I also feel good knowing that people that don't have personal experience with Ds, especially people I haven't seen in many years, can get something from this as well.
Tuesday, October 25, 2011
Ok, fine...
So maybe social networking is not totally evil. At least not all of the time.
Today, I received a message on the Book of Faces from a friend from college. He asked me my opinion regarding how he might handle a specific situation with a person with Ds in his professional life.
I couldn't have been more thrilled.
Seriously. I love answering questions.
Now, I don't think I'm the end all-be all when it comes to Ds. I don't know everything about everyone with 47 chromos, by far. But, I swear, it's nice to be asked. He didn't have to do that. It was respectful and genuine and that's the most I can ever ask for.
I took the time to think through my response, not wanting to do either him or the person with Ds a disservice. I thought about different scenarios. I weighed one possible situation versus another. And then I thought some more. And googled.
I probably gave him way too much information.
And when I finally sent what I had come up with, he responded. He told me that what I told him was pretty much in line with what he was thinking and that I gave him a few additional tips that may prove helpful.
I still can't help but think that I totally screwed that up because I am a pessimist at the core of my icy heart, but hopefully it all went fine.
I have to admit, if it weren't for FB or this blog, we may not have ever had that exchange.
So, fine. I give one up to the wide, wide world of web.
*shaking my fist ominously at the sky*
And now? There are some kids on my lawn that I need to go yell at.
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.
Thursday, October 20, 2011
More Buddy Walkin'
On October 1st, we attended our very own local Buddy Walk. Imagine that, not having to travel by bus or plane! We didn't even have to drive more than about 10 minutes each way. Craziness.
It was the first day I remember really feeling like fall. And when I say that, I mean it was cold. I realized I had reached another weather milestone. Unlike when we were in The Land of No Seasons, it was going to go from oppressively hot to insanely cold. And I was going to have to learn how to deal with it. Bah.
I know. I'm a wimp.
So, yeah, Buddy Walk morning was brisk.
But it was gorgeous.
Playette got out of the car feeling nice and good.
She's on display, on display, on display.
We checked in, got our bag o' goodies and started with some face painting.
For some reason, Playette's ended up on her hand instead of her face. I'm not sure why I got hooked up and she didn't.
We didn't dwell on that mystery. Instead, it was off to the sidewalk chalk.
Not long after, it was time to start the actual walk. I really love the location of this Buddy Walk. It's scenic, central, and so many people come through there to walk dogs, have parties, work out, or to use the playground that I actually feel like that by having it there, some awareness is raised. People have to ask, "I wonder what's going on over there?" or "Who are all these people in matching shirts?" and I think that's really cool. I know that not every walk can be in a place like that, but it's nice that it can happen.
We did the mile-ish trek around the lake, checking out signs along the way that told stories of people with Ds of all ages. I had considered filling out the form so that Playette could have one, but I got a big, fat case of Something Shiny!Over There! and was distracted enough that I missed the deadline. Go, me.
When our loop was complete, we gorged on pizza and oatmeal pies.
Ok, maybe that was just me with the oatmeal pies, but still. Everyone else could have had some, too. They just need to learn to move quicker.
There was music throughout, with performances by cheerleaders and a dance team. We got to meet new peeps and spend time with friends. Playette also made sure to get her money's worth out of the bounce house.
Speaking of getting one's money's worth out of something...Sheree, if you're reading, please know that we squeezed every moment we could out of those shirts from last year. Both Playette and I were struggling to keep our navels covered. Now that's the mark of a good tee! Still useful and well-loved. We'll surely re-purpose those. Thank you, again. I wish we could be there with y'all again this year. Also? I totally wore those striped socks to the NYC Buddy Walk.
All in all, another great day. So great, in fact, that I came home and crashed for the rest of the night. Party animal. Woot.
It was the first day I remember really feeling like fall. And when I say that, I mean it was cold. I realized I had reached another weather milestone. Unlike when we were in The Land of No Seasons, it was going to go from oppressively hot to insanely cold. And I was going to have to learn how to deal with it. Bah.
I know. I'm a wimp.
So, yeah, Buddy Walk morning was brisk.
But it was gorgeous.
Playette got out of the car feeling nice and good.
She's on display, on display, on display.
We checked in, got our bag o' goodies and started with some face painting.
For some reason, Playette's ended up on her hand instead of her face. I'm not sure why I got hooked up and she didn't.
We didn't dwell on that mystery. Instead, it was off to the sidewalk chalk.
Not long after, it was time to start the actual walk. I really love the location of this Buddy Walk. It's scenic, central, and so many people come through there to walk dogs, have parties, work out, or to use the playground that I actually feel like that by having it there, some awareness is raised. People have to ask, "I wonder what's going on over there?" or "Who are all these people in matching shirts?" and I think that's really cool. I know that not every walk can be in a place like that, but it's nice that it can happen.
We did the mile-ish trek around the lake, checking out signs along the way that told stories of people with Ds of all ages. I had considered filling out the form so that Playette could have one, but I got a big, fat case of Something Shiny!Over There! and was distracted enough that I missed the deadline. Go, me.
When our loop was complete, we gorged on pizza and oatmeal pies.
Ok, maybe that was just me with the oatmeal pies, but still. Everyone else could have had some, too. They just need to learn to move quicker.
There was music throughout, with performances by cheerleaders and a dance team. We got to meet new peeps and spend time with friends. Playette also made sure to get her money's worth out of the bounce house.
Speaking of getting one's money's worth out of something...Sheree, if you're reading, please know that we squeezed every moment we could out of those shirts from last year. Both Playette and I were struggling to keep our navels covered. Now that's the mark of a good tee! Still useful and well-loved. We'll surely re-purpose those. Thank you, again. I wish we could be there with y'all again this year. Also? I totally wore those striped socks to the NYC Buddy Walk.
All in all, another great day. So great, in fact, that I came home and crashed for the rest of the night. Party animal. Woot.
Wednesday, October 19, 2011
Siblings
Playette doesn’t currently have any, but there’s always a lot of really interesting discussion going on around me about how people of all ages (must) feel about having a sibling with Ds.
Some believe it’s the best thing that’s ever happened to them. They have joy beyond measure.
While others believe that it would be a pox upon their family for generations upon generations to even consider bringing a child with such a diagnosis into their home…for the sake of their existing or future children.
Personally, I haven’t ever felt like we would or would not have more children based on Playette’s diagnosis. It simply hasn’t been a factor for me. I don’t have expectations for another child of mine to one day be her caretaker, nor have I considered that having/bringing another child into our home would one day lead to resentment of either us or their sister. I don’t know if that makes me naïve or what. I’ve always - well at least after that first year of her life - felt that Playette would be able to one day do for herself. That’s the way we raise her. As if one day she will leave our cover and be her own person.
Shoot, we've got plans for 2025 and beyond. Grown-up plans.
Sometimes I wonder if other parents look at us in shock or disdain because we don’t do more for her, physically. As a first-time parent, I’m only doing what I think is best. Which means that I’m totally winging it.
So, yeah, I ask her to do as much for herself as I believe is realistic for her at that moment in time. Maybe one day I will discover that my expectations were too high. I guess I’m willing to take that chance. Again, it’s a personal philosophy based on how I, myself, was raised, combined with the input of BD, which is based on his experiences. Those were amazingly different, so we meet somewhere in the middle and have created The Smith-Smith Way. Which includes her taking off her own clothes and putting them in the hamper. You know, do as I say, not as I do. That kinda thing. One day, she's going to notice that I'm messier than she is.
But, I digress.
My point in addressing the sibling situation is that I wanted to talk a little bit about how this article made me feel.
In a nutshell, I liked it.
Even though, at age 27, Diondra is far from being Jamie’s older sister, as the article indicates.
Plus, a video would have been awesome. If anyone sees it somewhere, please let me know.
Maybe it’s because I’ve met them both (at different times) that I feel a teensy, itty bitty connection. It just feels like they have a great relationship and I love that. When we were in San Antonio last summer, I chatted with Diondra for a bit at the dance on Saturday night. I told her how I had seen her dance in his Blame It video and on an award show and she inspires me when it comes to thinking of my daughter’s future.
I remember how she placed her hand to her chest and lowered her head in that “Oh, stop, you’re too kind” way. After stepping away, I was told by a friend that she had been chatting with Jamie via Facetime on her iPad while he was in another country filming a movie. I remember wondering what they talked about. Was she telling him what a great time she was having? (Or that she was being stalked by this one weird mom, even?) Was he telling her to live it up and that he’d see her soon?
I’ll never know.
But what I didn’t notice was resentment or any sense of one being a burden on the other.
And I appreciated that.
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.
Monday, October 17, 2011
Times Square Video
I promised you a link and a link you shall have.
Here's a bit of what it's about, taken directly from the site:
"Every year, NDSS reminds the world in a big way about the gifts that people with Down syndrome bring to their communities through a special video presentation on a jumbo screen in the heart of the Times Square in New York City."
Click through for more details and to watch.
National Down Syndrome Society Times Square Video 2011
I tried to watch it again just now and I started tearing up. What is wrong with me?! I blame the music. I couldn't hear the soundtrack in Times Square.
Yes, I'm blaming an instrumental.
The video is about 19 minutes long. Our girl shows up at 8:35.
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.
Saturday, October 15, 2011
I Needed This
Since (news flash!) it's Down Syndrome Awareness Month, there are lots of stories out there about people with Ds doing all kinds of things.
I think that's great.
But those aren't always my kind of stories.
I'm real wishy-washy on the homecoming court/non-defended touchdown type of stuff.
One video in particular that I saw recently, actually made me angry. Well, maybe frustrated is more fair. In a nutshell, it hyped the person with Ds up to be this amazing [fill-in-the-blank] and then when it was time to perform, I was confused, then disappointed, because what was promised wasn't what I saw.
I didn't think that was fair to me or the person with Ds.
I feel this way because I truly believe that people with Ds can do amazing things. Sure, maybe that person was having a bad day. That happens to everyone. But, if they're truly not THE MOST AMAZING WHATEVER, then let them be what they are. It's totally ok. No patronizing necessary. We're not all prodigies in everything. Shoot, sometimes I can't even walk across a room without tripping over my own feet.
So, in the vein of keeping it real, I give you...Addi. She's what I like to consider a breath of fresh air.
I had to come back and clarify my feelings for this video after reading Alison's comment. I can see now that I wasn't as clear as I could have been, originally.
I think that's great.
But those aren't always my kind of stories.
I'm real wishy-washy on the homecoming court/non-defended touchdown type of stuff.
One video in particular that I saw recently, actually made me angry. Well, maybe frustrated is more fair. In a nutshell, it hyped the person with Ds up to be this amazing [fill-in-the-blank] and then when it was time to perform, I was confused, then disappointed, because what was promised wasn't what I saw.
I didn't think that was fair to me or the person with Ds.
I feel this way because I truly believe that people with Ds can do amazing things. Sure, maybe that person was having a bad day. That happens to everyone. But, if they're truly not THE MOST AMAZING WHATEVER, then let them be what they are. It's totally ok. No patronizing necessary. We're not all prodigies in everything. Shoot, sometimes I can't even walk across a room without tripping over my own feet.
So, in the vein of keeping it real, I give you...Addi. She's what I like to consider a breath of fresh air.
I had to come back and clarify my feelings for this video after reading Alison's comment. I can see now that I wasn't as clear as I could have been, originally.
Friday, October 14, 2011
Sharing
It's nice to see a celebrity devoting some time and blog space to Down Syndrome Awareness Month.
I think that Tori Spelling's friend, Lisa, has a great attitude and I'm sure we'll hear more from her in the future.
Check out what she has to say, as well as pics of her cutie-newbie, Blake, here:
-->clicky clicky<--
I think that Tori Spelling's friend, Lisa, has a great attitude and I'm sure we'll hear more from her in the future.
Check out what she has to say, as well as pics of her cutie-newbie, Blake, here:
-->clicky clicky<--
Thursday, October 13, 2011
Are you crossing the line?
On Tuesday, it was brought to my attention that I may want to consider setting my DVR to record yesterday’s episode of the medical information show, The Doctors.
Why? Well, they’d be talking about people with Ds who choose to have plastic surgery to change their much more obvious facial features to those that were considered more subtle. The goal would be to not be immediately identified as a person with an intellectual disability and perhaps then be afforded more opportunities or maybe even just be treated more like the average 46er. (Guessing these people haven't see this video of a woman getting taunted and beaten, but I digress.)
Ok. I understand the premise. I’ve heard of this type of surgery before, but there’s not a lot of information out there on people that have actually had the procedure(s) done. This is possibly because many of the patients are minors and/or it’s done in secret as to not bring attention to a surgery that was meant to defray such attention in the first place. I do recall seeing an article about a little girl in the UK a while ago. That’s about it though.
Really, it’s not about whether or not I agree with what people choose to do with their, or their children’s, faces. It’s not something I would do with my daughter. I can say that. As much as I wish we could keep her tongue from protruding, I'd much rather continue Oral Motor Therapy than clip it. I just don’t see the point.
Which brings me to the show.
I watched it last night thinking that there might be an actual debate. I thought that maybe they’d shed some light on the types of procedures people are having done, what the “success” rate is, or whatever. I wanted, and expected data. You know, actual medical information from a show built on providing medical information.
Sigh.
Ok, so the topic of the episode was “Are you crossing the line?”. They had several different segments that addressed people’s controversial cosmetic surgery choices, the last of which being the one that addressed Down syndrome.
I admit, I rolled my eyes a lot. There was way too much clapping. There was no debating like there had been in previous segments. It just seemed like, once again, the argument was that people with Ds are perfect and we can’t even TALK about things the way that other groups can.
Their faces remind people that they are different and that’s necessary because otherwise they wouldn’t get the help they might need*. (thunderous applause) People with Ds don’t need to try to be “normal”; “normal” people need to get with the program and accept people with Ds just the way they are.** (thunderous applause)
*But what about all the people with varying disabilities that don’t have Ds? Should they change their features to get help?
** Ok, fine. Yes. But what about the people who don’t agree? Let’s hear from them. Are there people who had it done and are happy with it? Show me. Or what about random audience members who have no Ds connection? Would they treat someone differently if they looked different?
Even Dr. Sears, who has a brother with Ds, said that his parents considered the surgery at one point, but opted not to go through with it.
He then went on to say,““We talk about trying to create normalcy,” Dr. Sears says. “But with Stephen, we could make him look normal on the outside, but he’s not normal on the inside.” (thunderous applause)
Gag.
For a show that talks about Ds on occasion and has a sibling of a person with Ds on staff, you’d think that some People First Language would come into play. But, no. There was a lot of Down’s/Down syndrome babies/people this and that, plus way too much use of the word “normal” for my own personal taste.
Because, really, what is “normal”?
I learned nothing new from watching the episode so that was disappointing. Additionally, it felt very patronizing.
I’m not upset with the show because they chose to talk about a controversial topic. I mean, they didn’t even really dig deep into it or anything. Plus, they didn’t create the surgery; they just brought the information forth. But, blah.
I did enjoy seeing Gail and Blair Williamson on screen though. Gail was the catalyst for our participation in the I’m Down with You project and her son, Blair, is an accomplished actor.
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.
Tuesday, October 11, 2011
The Ride Home
Today was unique in that BD and I didn't carpool. Also, I got to drive the nicer car. The one with satellite radio. That really, really helps with the commute.
And my swag. I am much more fly when I drive the car. It's been scientifically proven.
Before I got in the car this afternoon to head home, I saw that my friend had mentioned on Facebook that one of Playette's favorite shows was acknowledging Down Syndrome Awareness Month. I made a mental note to turn to Kid's Place Live as soon as I started my drive.
It doesn't bug me to listen to that station, even when Playette's not around. I've caught myself on a few occasions singing along before I realized that I, as an adult, did not have to listen to "Crayola Doesn't Make a Color for Your Eyes" for the 1700th time. Even when I have the option to switch it off, I sometimes stick around because, honestly, I kinda like it. Or, at least, I'm not horribly annoyed.
With that said, I was really anticipating hearing what the host had to say today of all days.
Right after I started the car, I heard her ask for callers who knew someone with Ds. Maybe a sibling? A friend? Or even yourself? What could you share with the audience about that person?
I figured I had a few minutes before the responses started coming in, so I switched to something more adult-friendly for a bit.
When I came back, I heard a little girl's voice. She was talking about her brothers. One of them with Ds.
What was most interesting to me about this scenario was that I recognized their names. And then I recognized hers. She was the daughter of my friend several states away. The friend whose announcement led me to turn to the show in the first place.
This little girl talked about what her older brother liked for a few moments and then she said something that has stuck with me all evening:
"He's the same and we love him."
I think that's what it's all about, peeps.
We're the same in that we're all unique. Every one of us brings something to the table of life. Whether one has 46 or 47, their life matters.
And we all need people to love us.
Thank you, Kit.
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.
Sunday, October 9, 2011
Sunday
Another glorious day here, weather-wise. I did my best to soak some of that up because, before you know it, I'll be complaining about the cold.
Auntie left this morning and Playette was none too happy about it. She had her backpack donned and was all ready to go with her. She wouldn't even say goodbye at first. Poor chile.
Shortly thereafter, I began the Quest of Failed Self-Improvement.
BD dropped me off at the hairdresser, but I got tired of waiting, so he came back to get me before I ever got started.
Later, I decided that maybe a pedicure would make me feel better about myself. So I drove to the shop only to find it was closed.
I am still just as much of a mess as I was when I woke up this morning.
In the middle of all of that somewhere, I decided to check in on the TMR boards.
Because, you know, it's been a while.
I don't know what I expected, really. I think that I'm probably still naive enough at times to believe that, generally, people are more informed. That, regardless of whatever choice they make for themselves and their family, they're doing it with the total of the info available to us in 2011.
Just so you know...that's not the case.
I read a lot of ignorant stuff today about children, people, with Ds. Stuff that people really and truly believe. Some of which was delivered to them on a silver platter by medical professionals so it must be true.
At one point, I looked up from reading and directed my gaze three feet down the couch at my daughter.
I wanted to keep an open mind while doing so.
I wanted to see if she was, in fact, suffering and maybe in my own selfishness I hadn't noticed.
I wanted to see if the feeling of her being a burden washed over me.
I wanted to check for every serious medical issue that some of those posters affirmed would occur with every single child with Ds ever born.
And you know what?
I just didn't see it.
I did see a four-year-old girl smiling back at me, in anticipation of whatever I might say or do next.
Her white shirt was stained by the red juice she had had earlier. Her socks were just begging to be pulled off and thrown on top of the shoes she had already discarded on the living room floor. She had an excited little bounce to her, as she usually does.
She was just the way I thought she was before I had started reading.
Happy and healthy and just where she belongs.
Auntie left this morning and Playette was none too happy about it. She had her backpack donned and was all ready to go with her. She wouldn't even say goodbye at first. Poor chile.
Shortly thereafter, I began the Quest of Failed Self-Improvement.
BD dropped me off at the hairdresser, but I got tired of waiting, so he came back to get me before I ever got started.
Later, I decided that maybe a pedicure would make me feel better about myself. So I drove to the shop only to find it was closed.
I am still just as much of a mess as I was when I woke up this morning.
In the middle of all of that somewhere, I decided to check in on the TMR boards.
Because, you know, it's been a while.
I don't know what I expected, really. I think that I'm probably still naive enough at times to believe that, generally, people are more informed. That, regardless of whatever choice they make for themselves and their family, they're doing it with the total of the info available to us in 2011.
Just so you know...that's not the case.
I read a lot of ignorant stuff today about children, people, with Ds. Stuff that people really and truly believe. Some of which was delivered to them on a silver platter by medical professionals so it must be true.
At one point, I looked up from reading and directed my gaze three feet down the couch at my daughter.
I wanted to keep an open mind while doing so.
I wanted to see if she was, in fact, suffering and maybe in my own selfishness I hadn't noticed.
I wanted to see if the feeling of her being a burden washed over me.
I wanted to check for every serious medical issue that some of those posters affirmed would occur with every single child with Ds ever born.
And you know what?
I just didn't see it.
I did see a four-year-old girl smiling back at me, in anticipation of whatever I might say or do next.
Her white shirt was stained by the red juice she had had earlier. Her socks were just begging to be pulled off and thrown on top of the shoes she had already discarded on the living room floor. She had an excited little bounce to her, as she usually does.
She was just the way I thought she was before I had started reading.
Happy and healthy and just where she belongs.
Saturday, October 1, 2011
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.
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.
Tuesday, September 20, 2011
Sometimes
Sometimes, I...just don't want to.
You know how you see things? Links, perhaps, and they're just everywhere and something rebellious within you just tells you to keep moving? Not now, maybe later. If ever.
Just me, then?
I kept seeing this video posted on Facebook, but I just couldn't bring myself to deal with the topic. Again.
Until tonight.
I watched.
And I bawled.
So now you have to watch it, too.
Or not, you rebel.
But it's here.
Just in case.
And even though she misspells the word, you still get the message, right?
You know how you see things? Links, perhaps, and they're just everywhere and something rebellious within you just tells you to keep moving? Not now, maybe later. If ever.
Just me, then?
I kept seeing this video posted on Facebook, but I just couldn't bring myself to deal with the topic. Again.
Until tonight.
I watched.
And I bawled.
So now you have to watch it, too.
Or not, you rebel.
But it's here.
Just in case.
And even though she misspells the word, you still get the message, right?
Friday, July 29, 2011
Updates & Stuff
I finished Insanity on Tuesday. I wanted to make a really big deal about it and shout it from the rooftops, but since I'm not sharing pics, I figured I'd hold back some.
I don't know if I didn't think I'd make it through to the end or what, but for some reason I never took before pictures so that I could make a comparison. With my body, I think comparisons would be necessary since the changes are pretty subtle.
So, yeah, no flashing of the belly on the interweb for me.
BUT! It went well, overall. The plan is 63 days and I was pretty diligent. I followed the calendar as closely as possible, taking one week off for an unrelated back injury and another couple of days for a sinus infection. I started on May 16th and finished on July 26th.
I got my butt kicked, in case you were wondering. I feel stronger though and I'm a lot more confident in my bathing suit. I consider that a mission accomplished!
Oh, and at one point, I had lost like 7 lbs, but our whole Season of Celebration in June/July took care of that. I pretty much broke even in the weight department.
Now, I'm trying to decide what's next. I haven't done anythingbut eat Chik-fil-A and Blizzards since Tuesday and I'm starting to feel antsy. I signed up for two races this week, one in October and the other in December, so I know that running needs to come back into the picture very, very soon.
=====
I went to look at a private school for Playette yesterday. The wind was kinda taken out of my sails. After the one-hour tour, I informed the lady that the kidlet has 47 chromos and I saw her face change. The smile remained, but if you've been in that situation, you know what I mean. In her eyes, this was not awesome news. She proceeded to ask me questions about the closeness of Playette's development to her typical peers. She told me that they don't have the staff to support her if she requires one-on-one instruction.
What is up with this whole "one-on-one" thing?! That's the same thing her jackhole teacher said in out last "meeting." I'm starting to second-guess myself. Does my child need a shadow 100% of the time? Am I being unrealistic?
The lady did say that they'd "be willing to try anything." Which, yay? I mean, my kid is a kid, not a monster. "Anything" kinda alludes to her being the worst of the worst and they're doing us some sort of favor.
Grr.
Maybe I'm just being way sensitive. I also recognize that I went in with really high expectations after another parent told me that her kids (one with Ds) have gone there for years and they were excited for the opportunity to work with Playette.
Maybe something changed?
So, yeah, since I haven't heard anything back from the school district, I'm making moves to set something private up. I mean, what else can you do? What they're offering just isn't good enough and, as many people as I've spoken to, it just doesn't seem that the program I requested can ever be a reality. Deadlines have been missed. Which, don't get me wrong, IT PISSES ME OFF! They passive-aggressively allowed this to happen and that doesn't escape me.
But at the end of the day, I will not allow my child to suffer because of their ignorance.
Now I just need to find the right place to pay to teach our child.
And hopefully treat her humanely.
I don't know if I didn't think I'd make it through to the end or what, but for some reason I never took before pictures so that I could make a comparison. With my body, I think comparisons would be necessary since the changes are pretty subtle.
So, yeah, no flashing of the belly on the interweb for me.
BUT! It went well, overall. The plan is 63 days and I was pretty diligent. I followed the calendar as closely as possible, taking one week off for an unrelated back injury and another couple of days for a sinus infection. I started on May 16th and finished on July 26th.
I got my butt kicked, in case you were wondering. I feel stronger though and I'm a lot more confident in my bathing suit. I consider that a mission accomplished!
Oh, and at one point, I had lost like 7 lbs, but our whole Season of Celebration in June/July took care of that. I pretty much broke even in the weight department.
Now, I'm trying to decide what's next. I haven't done anything
=====
I went to look at a private school for Playette yesterday. The wind was kinda taken out of my sails. After the one-hour tour, I informed the lady that the kidlet has 47 chromos and I saw her face change. The smile remained, but if you've been in that situation, you know what I mean. In her eyes, this was not awesome news. She proceeded to ask me questions about the closeness of Playette's development to her typical peers. She told me that they don't have the staff to support her if she requires one-on-one instruction.
What is up with this whole "one-on-one" thing?! That's the same thing her jackhole teacher said in out last "meeting." I'm starting to second-guess myself. Does my child need a shadow 100% of the time? Am I being unrealistic?
The lady did say that they'd "be willing to try anything." Which, yay? I mean, my kid is a kid, not a monster. "Anything" kinda alludes to her being the worst of the worst and they're doing us some sort of favor.
Grr.
Maybe I'm just being way sensitive. I also recognize that I went in with really high expectations after another parent told me that her kids (one with Ds) have gone there for years and they were excited for the opportunity to work with Playette.
Maybe something changed?
So, yeah, since I haven't heard anything back from the school district, I'm making moves to set something private up. I mean, what else can you do? What they're offering just isn't good enough and, as many people as I've spoken to, it just doesn't seem that the program I requested can ever be a reality. Deadlines have been missed. Which, don't get me wrong, IT PISSES ME OFF! They passive-aggressively allowed this to happen and that doesn't escape me.
But at the end of the day, I will not allow my child to suffer because of their ignorance.
Now I just need to find the right place to pay to teach our child.
And hopefully treat her humanely.
Thursday, July 21, 2011
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 mysexy sleepy voice.
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
Subscribe to:
Posts (Atom)
Posts
