Day 21 Giveaway: Love on the 21st Chromosome

Wednesday 31 October 2012

The world can be a small place, and the Down syndrome community even smaller.

When Kayla started attending the school she was at the last 2 years, her classroom was across the hall from the reading specialist. Unfortunately she is the reading specialist for the 4th and 5th graders, so Kayla was never in her class. But this teacher got to know Kayla and they greeted each other every day.

Turns out this teacher has a young granddaughter who has Down syndrome. We finally connected and then her daughter and I became FB friends as well. I met her daughter, and adorable granddaughter, over Spring Break when they were here for a visit.

Her daughter, Jenny, generously donated 3 t-shirts (white, size medium) that say "Love on the 21st Chromosome" for this giveaway - thank you Jenny!

To enter leave a comment on this post and then click on the +1 Do It link on the Rafflecopter widget.

To earn another entry you can Tweet about the giveaway. You can do this directly on the Rafflecopter widget.

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(Refer back to 21 Days of Giveaways throughout the month to see all of the giveaways.)

 

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I Sometimes Feel Disconnected

Sometimes I feel a disconnect from the Down syndrome community in the way I feel, or describe, Kayla having Down syndrome.

I don't say, or believe, that Kayla (or "kids like her") is a special angel sent from God, nor that she is a gift from God because she has Down syndrome. I am religious, and I do believe in God, but Kayla is simply my child; a human being. She isn't a gift from God because she has Down syndrome, but she is a gift because she simply exists...she's a gift from God because childbirth itself is a miraculous event ... but she is a gift from God in the same way that Lucas is ... because they are my children.

She is only 9 years old ... she hasn't done anything (yet!) quite so marvelous to be given angel-like status. She isn't Mother Theresa! Having an extra chromosome doesn't make her an angel. If I promote the "More Alike Than Different" campaign how could I call her an angel? It's like going from one extreme to another ... society can have such a negative image of Down syndrome that we're going to go the complete opposite direction and call people with Down syndrome angels?

Calling all kids with Down syndrome angels feels to me like the stereotype of 'they're so happy and loving!' "They're angels sent from God" has the same ring to it. If I refute the 'so happy' stereotype and ask that Kayla not be lumped in as a stereotype based on her chromosomes, how could I then turn around and say, "oh but she's an angel!"? She's simply not. She is her own person with her own personality and her own character traits.

Saying that she is an angel sounds like elevating her status above a human being. It sounds like I'm putting her on a pedestal. It sounds like it's giving her carte blanche to do whatever she wants and excuse any behavior because, 'oh she's just an angel!'

I try so hard talk about the 'normalcy of difference' and show Kayla for who she is - a valued member of this family and of society - that I just can't make a blanket statement about her, and other persons with Down syndrome, being an angel on the basis of having an extra chromosome.

Then there is Lucas. I don't know how I would feel if I grew up with a sibling constantly being referred to as an angel from God. How would that make him feel? Why should I refer to her as more special than him? She does have some, for lack of another word, 'special' educational needs, and as she grows older there will be some 'special' arrangements we'll have to make for Kayla that we won't for Lucas. But, to quote a friend, she isn't 'special-special.' She is just who she is.

I also don't quite believe that she was 'blessed' with this extra chromosome either. It's just something that happened at conception, it's just something she has. Is it a blessing? I don't know. Down syndrome brings with it some frustrations and challenges for her (and me!) but is it really some kind of blessing?

I'm blessed to be her mom, but that's just because she's my daughter. I don't feel Down syndrome plays a part in that. I'm just as much blessed to be Lucas's mom.

Just because we're part of this big Down syndrome community doesn't mean we all have to agree on everything; it doesn't mean we can't have individual thoughts and opinions. Just because I feel like I do about this topic doesn't mean I'm right or someone is wrong for feeling like kids with Down syndrome are angels.

These are just my thoughts and it's ok to agree to disagree!

 

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No Miss Gaga, these are MY monsters.

Oh hey, it's Halloween or something like that today, right?

Yes, it's absolutely true, I used to be one of those girls who ho it up for this special occasion.

 Lady bug, girl scout, fireman... I could continue to list the messed up things I found a way to attempt to make "sexy" but let's face it, those days are long gone with my dignity, throwing up peace signs and these duck lips... 

and this was one of my mildly ho years.

Dammit, I miss college.

Moving on, since I have no costume to show off today other than exhausted working girl, hopped up on caffeine, I'm going to show off what my top two choices would be if I could trick-or-treat with some of my favorite bloggers.

Because they are probably the only ones who would actually agree to legitimately trick-or-treat with me at this age.

I feel that Sami, Kate, Brooke, Ty-Ty and myself would seriously spice up some lives dressing up as Spice Girls together.

See?
Obviously we'd sing and dance for candy.
And booze.


But really, my favorite holiday (aside from my birthday, duh - wink face) would be Christmas, so to pay tribute I think Ty-Ty sparkle unicorn and myself would make a pretty jolly Santa and Buddy the Elf.

See?

Enjoy your Halloweeny everyone and to those of you still in college, living up those awesomely scandalous costumes, I salute you. 

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Day 20 Giveaway: From Grief to Celebration

Tuesday 30 October 2012

Margaret (Gary) Bender blogs about life with her daughter, Alex, at The Ordinary Life of an Extraordinary Girl. Her blog is one of a few that I follow that is about life with an older child who has Down syndrome. I sure do appreciate reading about Gary's experiences about Alex's school life.

Gary has also written a memoir From Grief to Celebration: How One Family Learned to Embrace the Gift of Down Syndrome. 

The book is about how one family learned to embrace the unexpected birth of a child with Down syndrome.

The memoirs I've read so far all surround lives of much younger children, some even younger than Kayla's age. Here is a memoir in which the daughter of the author is out of high school.

I haven't had a chance to read this book in time for the giveaway, but it's a thin book and looks to be an easy read and I'm looking forward to diving in to it! Gary has written the chapters of the book in the stages her family went through including grief, research, incorporation, inclusion, and family planning. I anticipate being able to identify with many of the stages and gaining some insight from someone who is much farther along on this journey than I am.

Gary has graciously donated a copy of her book for this giveaway; and as soon as I finish it I will send it to the winner! Or you can get the Kindle version for only .99 through the rest of this week!

To enter leave a comment on this post and then click on the +1 Do It link on the Rafflecopter widget.

To earn another entry, and to spread the word about From Grief to Celebration, you can Tweet about the giveaway. You can do this directly on the Rafflecopter widget.


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(Refer back to 21 Days of Giveaways throughout the month to see all of the giveaways.)


 

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Domestic Violence: My Story

It seems that any other awareness campaign that happens in October gets overshadowed by Breast Cancer Awareness. I don't know of all of the awareness campaigns for October, but I do know besides Down Syndrome Awareness, it is also Domestic Violence Awareness. 

Even though this evolved from the first Day of Unity in Oct 1981, it still seems to be something that is not often spoken about or brought out in the public light. It is still one of those issues people just don't like to talk about. It's an ugly topic, no doubt about it. It's not easy to bring the subject up if you suspect someone of being abused, and it's not easy to admit if you are being abused.

The National Coalition Against Domestic Violence has many resources, information, and ways to get help. There is also a trailer for a powerful documentary called Private Violence: Why Didn't She Leave?

According to a few stats I've read recently:
- 1 in 4 women have experienced domestic violence
- nearly 3 out of 4 Americans know someone who is or who has been a victim of domestic violence
- an average of 3 women in the United States lose their lives every day as a result of domestic violence

Pretty sobering statistics. While those all reflect what happens to women, domestic violence can and does happen to men as well.


I am one of those 1 in 4 who have experienced domestic violence in a relationship.

It happened around 15 years ago. I don't dwell on it anymore. That seems like another lifetime to me now. I've moved on. We've both moved on. We've both remarried and last I heard he has 5 boys. I certainly hope that means he changed his ways and learned some coping strategies with anger management classes.


What I experienced wasn't as extreme as what some woman experience, but I know it can help to read about some one's story. To read about something you might have went through, or are going through, and know you're not alone ... even though every story is different.

Here is my story that I first posted 5 years ago.

 

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Two anxiety ridden Maltese and one adjusting mama.

So, I'm still adjusting to this new 1 bedroom apartment thing and so are the dogs.

Yesterday I introduced my little Princess Palace to the tech savvy world of cable and internet, which basically means that I'm a citizen of America again. Thank the good lord, right?

And because cable companies are so specific and helpful, I had to bring in some back ups for the convenient time frame of 3pm-5pm so that I didn't miss them. My back up would be my mom, or Boskita.

Little did I know that confining sweet Boskita in the walls of my cable-less, internetz-less apartment would cause her to go stir crazy. Or maybe she got in to the boxed Chard?

All I know is that I began to receive photos like this while I was closing down my work day:

-Insert my rushing home abnormally faster than the usual.-

I'm fairly certain they were overly ecstatic to see my face walk in that door. 

Oh, that Boskita. Sorry, babies.

Speaking of babies, they haven't adjusted to the new place yet - in fact, I am currently in the market for some type of dog weed to calm their nerves. Moving is stressful stuff when you're 3 and 7 pounds, apparently. 

Which was made pretty clear when I found that one of these little devils angels took to gnawing on a door frame while I was at work yesterday. I'm so pleased, really.

If anyone has a dog weed guy, hook a sister up.

They're still doing their part to keep mama bear safe though...

Terrifying, I know.

Anyways, that's really all I've got for you today. 2 anxiety ridden Maltese and one adjusting mama.

I hope all of my Eastern Amurica people are hanging in there and Sandy isn't beating on you too hard. This Floridian knows all about bastard storms and I know you all can't be having a good time. You all are in my thoughts and prayers - stay safe, please.

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Proclamation 5252

Monday 29 October 2012

A brief history about National Down Syndrome Awareness Month...and a picture of my reason for recognizing October as Down Syndrome Awareness Month:

October was first designated Down Syndrome Awareness Month by the National Down Syndrome Society in 1981. I'm not sure why October was chosen, it wasn't to coincide with the Buddy Walks as those started much later - in 1995.

The NDSS spearheaded this awareness campaign and in 1984 Congress, by Senate Joint Resolution 254, designated October as National Down Syndrome Awareness Month and authorized and requested President Ronald Regan to issue a proclamation in observance of this month.

It's interesting to read Proclamation 5252 that was made 28 years ago and see how things have changed. 28 years doesn't seem that long ago, but there were some things that stood out to me when reading it.

- it was written Down's (which is interesting because in 1975, the United States National Institutes of Health convened a conference to standardize the nomenclature of malformations. They recommended eliminating the possessive form: “The possessive use of an eponym should be discontinued, since the author neither had nor owned the disorder.”)

- The proclamation reads, "This new age of enlightened understanding recognizes that developmentally disabled persons have a great potential for achieving and overcoming handicaps. Down's syndrome, a condition once thought to be without hope of positive change, is one of the best symbols of this changing attitude." Yet it feels like families and self-advocates are still fighting to show the potential that people with Ds have.

- The proclamation talks about researching uncovering the genetic basis for the condition and 'points the way to it's ultimate prevention.' I admit to thinking, 'ouch!' when reading that. The ultimate prevention of Down syndrome? Why was that put it in a proclamation that earlier stated enlightened understanding recognized that people with disabilities have great potential for achieving and overcoming handicaps? Not to mention the fact that you simply can not prevent Down syndrome from happening since it occurs at conception. (Well, in IVF you can by screening before implantation). You can prevent babies who have Down syndrome from ever being born, but you can not prevent Down syndrome from happening.

- The statement about pointing the way to it's ultimate prevention seems in direct contradiction to how the proclamation ends; imploring everyone to unite in October in support of observances and activities that will assist individuals with Down's syndrome and their families to a fuller and more rewarding life.

- Despite the reference to 'ultimate prevention' I am grateful that there is a Down Syndrome Awareness Month.


 

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Day 19 Giveaway: Pillowcase from Sarah & Joyce

Joyce and Sarah are a mother-daughter blogging/sewing team. Sarah is a young adult who has Down syndrome and Joyce, is her mother who also blogs at JEllen's House of Fabrics.

They are both business-savvy ladies who opened their own quilting store in which Sarah works in and helps run the store.

When Joyce started teaching Sarah sewing she decided to start with pillowcases. Soon after that she came across the 1 Million Pillowcase Challenge. When Joyce read this part about the challenge, "A pillowcase can provide comfort for a cancer patient..." Sarah immediately thought of her friend, Kristen (who later, sadly, passed away from cancer.) They hosted a kick-off party at the quilting store and collected pillowcases which were donated to a local hospital.

Sarah and Joyce are graciously donating one of their pillowcases; the winner will be able to pick a design from a host of different categories.

To enter leave a comment on this post and then click on the +1 Do It link on the Rafflecopter widget.

To earn more entries, and to spread the word about Sarah and Joyce's JEllen's House of Fabric, you can like their Facebook page and Tweet about the giveaway. You can do each of those things directly on the Rafflecopter widget.

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(Refer back to 21 Days of Giveaways throughout the month to see all of the giveaways.)

 

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The weekend I boozed because I moved.

Oh hey there, my loves! It's Monday, if you were unaware, and I feel like I got beat up this weekend.

Much to the disappointment of you haterade drinkers out there, I did not get beat up. I spent my weekend moving, drinking, moving, drinking, unpacking and drinking a little more. 

You see, the booze cushions the pain of the moving. Until it wears off, of course, and that's where I'm at today. 

So, enough about my moving induced binge drinking - allow me to show you my weekend in photos, because Monday's are the one day in blog world you don't have to come up with a real topic to talk about.

So, if you live under a rock, or don't follow me on the Tweeter or Instagrammy machines, you may not be aware that I officially signed the next 12 months of my life away and got the keys to the Princess Palace on Friday morning.

I did my hair and makeup just so I could take this charmingly cliched photo for this post. You're welcome.

#bloggerprobz

Here's what she looks like from the back door. She's very naked right now - excuse her while she waits for her new sofa and ottoman to be delivered in 6-8 weeks. (See also: F to the ML)

Here is reason numero uno that I needed this Princess Palace. Now, someone come visit so I have a reason to cook in this bad boy.

Reason numero two... I can do laps in the tub and fully intend on it.

Hey Lush, let me know if you need me to review any bath bombs for you.

And so that was day one. My furniture didn't get moved until Saturday - so the rest of this day was for drinking and going to see Wanda Sykes with my lover, Kate.

We had way too much fun despite Wanda using the first hour of her set as an Obama rally. I enjoyed her set on boobs much better. 

And also roaming City Walk with Kate and vodka.

Saturday the movers came at 8:30am which was just everything I wanted after a night of drinking mass amounts of vodka. This day was exhausting to the 500th power and I am happy to announce that I didn't even have one meltdown. Impressive, I know.

My Saturday night went a little like this...

Chardonnay, leopard robe, 27 Dresses, asleep by 10.

I got a full 11 hours of sleep and it was pretty much the greatest thing of my life.

And then I used all of that energy to drink around the world with my birthday girl, Amanda.

Oh hey, toasted girl.

And with that, I'm out. 

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Down Syndrome Education for Med Students

Sunday 28 October 2012

Dr. Julia Kinder, who is a family practice physician, and has an 8-year old daughter with Down syndrome, created a petition to require complete education on Down syndrome for 3rd year medical students.

After her experience of going through medical school she feels that medical schools don't "realize the far-reaching implications of this diagnosis into our society, influencing how we view and accept people with disabilities." She doesn't feel as if her medical training prepared her for understanding what it would be like to have a child with Down syndrome and she has counseled hundreds of new parents who have the same opinion.

You can visit her website for more information.

~~~~~~

Someone left this link on one of my older posts (thanks hodonn!) and I thought it was a great article and wanted to share it on my blog.

Stephen becomes first councillor in the UK with Down syndrome. I don't know what a councillor in the parish does, (can anyone explain this to me ... Rebecca, can you ask your husband?) but kuddos to Stephen for going for what he wanted to do. I love this quote from him, "I want to help other people in the community I've grown up and lived in all my life."

 

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National Down Syndrome Registry

The Global Down Syndrome Foundation just released the information that the National Institutes of Health is establishing a National Down Syndrome Patient Registry.

This is pretty exciting news as there is nothing like this for the Down syndrome community.

From the press release: The national registry will collect much needed medical information from people with Down syndrome, and connect people with Down syndrome and their families with scientists engaging in research that is of interest to those people and their families. The registry will be used to identify critical health trends, the most effective treatments and clinical trials for potential therapies.

People with Down syndrome or their families will be able to enter and update contact information and health history in an online, secure, confidential database. Participants can choose which information they would like to display, receive reminders about their own medical care and compare their medical information to that of other registrants confidentially and anonymously.

Those who give permission may be contacted by authorized clinicians and researchers to see whether they are interested in joining a research study.
 
From Michelle Sie Whitten, Executive Director of the GDSF, "Clearly if implemented and supported appropriately, this will be a huge game-changer regarding health outcomes for our children and adults with Down syndrome."

It doesn't say when the registry will be online, but hopefully soon! 

 

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Perfect

Saturday 27 October 2012

ESPN has a segment called E:60 that gives you a behind-the-scenes look at a story they're reporting on.

They recently had an episode titled "Perfect." The description: "There was a time when Heath White chased perfection. E:60 s Tom Rinaldi tells the story of a how the birth of a girl with Down Syndrome led to the re-birth of a man who thought he had everything, until he discovered the joy of pushing Paisley."

This was such a moving piece to watch. The raw emotions in Heath admitting he did not want his wife to continue with this pregnancy; he did not want a daughter who has Down syndrome....and for his wife, whom an abortion was not an option. They tell their story of how Paisley changed her father's views on life.

It is well worth the 15 minutes to watch it.


 

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Day 18 Giveaway: The Politics of Down Syndrome

Friday 26 October 2012

The Politics of Down Syndrome by Kieron Smith is a book I've been wanting to read since I first heard about and am glad to finally have the opportunity to read it. It is definitely not your usual book on Down syndrome; nor is it even a memoir about Down syndrome; although Kieron is the father to a daughter who has Down syndrome.

This books takes a look at the historical descriptions of Down syndrome and how, even though we know so much more about it, our (society) thoughts and attitudes seem to have largely remained unchanged. Perceptions about Down syndrome are still steeped in decades old stereotypes. This has continued to affect attitudes and prevent full inclusion and acceptance of persons with Down syndrome in their communities.

Mr Smith also takes a look at the medical field and how the negative image of Down syndrome starts during pregnancy by applying the term "risk" to a prenatal test for Down syndrome. How much weight does it carry to say "Your risk of having a child with Down syndrome is (fill in the blank) percent." By applying the word 'risk' it seems to equal something negative happening. Using the word 'chance' would be much more neutral.

Since Mr Smith lives in the UK a lot, but not all, of the references are from that aspect, but can easily be applied to what is happening in the US as well.

I found this to be a very fascinating, and quick (it's a slim book) read. This is a great book for parents, educators and the medical field ... this is a book that should also be shared with and read by the general population outside of the Down syndrome community.

An excerpt from the book,
"The hurdle for society is to somehow come to appreciate the essence of the title of Dobzhansky's work that differences are not deficits, that difference should just be accepted. This does not have to be divisive, it does not have to mean that difference is celebrated in a way that divides communities, and rather it should appreciate the commonality in the human experience. Because we are all different, our genes and experiences, then a society that recognizes and appreciates the talents and difference of everyone, is a society that can truly be both enlightened and progressive. Ignoring status, wealth and power and focusing on what each person can achieve.

Now how do we get society to embrace differences?

Kieron is also a Trustee of Down Syndrome Education International and all proceeds from the book are donated to DSE. 

Kieron Smith has generously donated a copy of his book for this giveaway - thank you!

To enter leave a comment on this post and then click on the +1 Do It link on the Rafflecopter widget.

To earn more entries, and to spread the word about The Politics of Down Syndrome, you can like the Facebook page and Tweet about the giveaway. You can do each of those things directly on the Rafflecopter widget.


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The Judgment of Bartenders

So lemme tell you 'bout my best fran ....



See?  Best frands.

I'm just kidding sillies, we aren't really Rob and Big.

My chesties aren't as voluptuous as Big's. Duh.

***************

Oh heyyyy everyone.  I'm Tyler from Arkansassy.

While my Rainbow Brite sparkle friend Pretty Whitty is off moving into her pink Princess Palace, she asked me if I could play substitute teacher.

Of course, I said yes.  Because, as it turns out, we're pretty much the same person with different hair colors.

I thought long and hard about the sage wisdom and ridiculous stories I wanted to give y'all.  I thought about telling you guys how I once got my tongue stuck in a bottle, or about how I sometimes dream about Sasquatch, or the time I lost my keys in the yard and blamed the dog.

Instead, I'm gonna fill you in on a secret.

Y'all ready?

Bartenders judge you based on what you drink.

Meep.  Sorry.

I bartended for quite some time, and lemme tell ya - what you drink defines who you are.  Bartending a restaurant, you don't see all of your patrons, so you just imagine what they look like in your head. You guess what they wear, how old they are, what their story is ... I think this is a skill somewhat inherent in bartenders.  Like a booze-slinging gypsy, we just know your story.  Maybe that's why everyone confides in us and tells us their deepest secrets.  Who knows. 

Tip: this game is especially fun in a college town.

Without further ado, let me tell you all about it.

(and please remember, this is all in good fun!)

Vodka and soda/water: 

This says, "I want to drink and be fun and go out with my friends, but I also want to lose weight."

See also: I will black out and probably cry about something completely random, like thinking I've upset my mother because I haven't talked to her in two days, because I haven't eaten all day either.  Then I'll throw up, get carried out and sleep for twelve hours.

Frozen drinks/ tropical drinks:

You are fresh off the 21 ship.  I remember the first time I got drunk, too! :)

Plus, Mai Tai sounds soooooo adorbs.  

And it's a play on my name, so I can't even fault anyone on that sort of cuteness.

Red Bull & vodka:

I like to party.  I also like to be completely out of control and cause my heart to stop.

Boone's Farm/ malt bevs:

You're probably using a fake ID.

Natty Lite/Keystone:

You're probably shacking in a frat house tonight.

PBR:

I'll bet you're wearing black rimmed glasses with non-prescription frames and watching Grey's Anatomy ironically.  Probably in some sort of flannel garb.  Looking cute, no doubt, but ironic nonetheless.

Cosmo:

No, I'M the Carrie!!!!

Gin Martini:

No, girl, you're the Samantha.  Rawr.

 DirtyVodka Martini:

I want to appear classy while still wanting to basically drink straight liquor and get fall-down drunk.

Glass of wine (bottle):

I'm a real class act.

Until I drink the whole bottle.

Then I fall down, and I can't be classy anymore with wet pants.

Glass of wine (box):

I'm a class act and fiscally responsible.

*********************

I'm guilty of drinking all of these, so I think that pretty much means I have some sort of not so borderline personality disorder.  I will say this, though: the Cardboardeaux is a good time.  I'm obviously a little biased.

I'd love to hear y'alls booze judgments.  Am I wrong with my judgments, or am I missing anything?

(and don't worry, Whitney will be back next week!)

If y'all get bored sometime, come on over and play with me!

________________

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"Diary Of A Valedictorian"

"Diary Of A Valedictorian"

Only want to leave
If I can get far away.
I'm on par today.
System running well.
Had to dodge hell
On the way to occupation.
He who rules a nation
Must contain the infestation.
No more lent to clues;
So in other news,
I just stripped the taxes
From my daily dues.
Praise to him forever.
Faith kept me together
When I knew that it would fall.
Never knew much at all.

So focused on learning.
Interested in earning.
Longing for new lecture.
No time for Trendsetter.
Nothing circles the cortex
Quite like a pair of squares.
Three angles of my attention
And I'm in the fourth dimension.
Stirred cyphers in study hall.
More than books lined the walls.
Academic bliss like a french kiss.
Rosetta stoned from the tongues.
Rhetoric I rarely ever speak
Splitting space with her tongue and cheek.
Said my study habits were weak.
She's my tutor twice a week.

On my way soon.
Just had view her swoon.
Time rescues the truth
From it's cage tooth by tooth.
Always took a chance
Without relinquishing my stance
And when making my advance,
I wield my wiles like a lance.
Javelin meets jugular;
Tearing down her muscular tones
Until her voice invites dial tones
And the need to be alone.
Not under the moon's eyes
Have I ever felt the need
To make room for another
Atop my restless, wandering steed.

So here we are. No luxury.
Traveling far across country.
Culture rich like cream.
Creating tomorrow's dreams today.
So much left to say.
Struggled finding ways.
I'm so fond of being fancy.
I should just say that I'm happy.

System well oiled.
Above par today.
Got so far away
And we did it all our way.
Home is in the miles.
Deeply delved in these domicile detours
and a haven of vast horizons.
We don't hear the sirens.
Crime replaced by wind chimes.
Gunshots are now slingshots;
Launching bullets at half speed
In the form of nourishment for seeds.
Blue streaks no longer scar pupils.
No blood left under cuticles.
No woeful sights to see.
Just my tutor and me.

Just daydreams.
Mercy me.

Life is so very grand.
She has a mean handstand
and a marvelous grind.
Such a rare find.
I want to use my hands
But this back to school dance
Is riddled with chaperones.
We can't be alone…………
…………we still have our zone.
We silence our phones
And sneak off to study hall.
Time to line her walls.
Skirt dangles from her ankle.
Awesome display of an acute angle.
A perfect forty-five degrees
Starts with her separated knees.
Coursing through trembling thighs
And deep sighs between cries.
Her love of pain against the grain
Gives me a residual high.

Everything felt right.
We walked home that night.

Okay; so it's all a story.
Let me forge my glory!
I'll never be a jock.
Nobody thinks I'm hot.
I'm cool with being a nerd.
The jocks don't know big words.
They can't even spell "absurd."
I win most verbal disputes.
I won't choose cleats over boots.
I'm sarcastic and astute.
I love to play the flute.
My tutor thinks I'm cute.

My words will pave the way;
But anyway,
There's not much more to say.
We'll talk another day.

Written By: Devin Joseph Metz

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Day 17 Giveaway: Taurini Designs

Thursday 25 October 2012

Kristy Yawman is another talented young artist who has Down syndrome. Taurini Designs was started by Kristy and her sister Stacy. Kristy's art is important in her life because it helps her express her inner feelings and makes her feel peaceful and calm.

Kristy uses her eye for detail and color to produce her creative drawings and Stacy scans the drawings, adds backgrounds, and puts the images on greeting cards, clothing, journals and notepads.

These are some of their most popular designs, Kristy has many more and they can also do custom designs and put the artwork on many different products.

I like the Cherry Blossoms and Calla Lilly designs ... those make me think of being peaceful and calm!

I also think their designs would look great as illustrations in children's books!

Stacy and Kristy are generously giving away a onesie for this giveaway - thank you!

To enter leave a comment on this post stating which of the most popular designs is your favorite and then click on the +1 Do It link on the Rafflecopter widget.

To earn an additional entry, and to spread the word about Taurini Designs, you can Tweet about the giveaway. You can do that directly on the Rafflecopter widget.

a Rafflecopter giveaway
 
(Refer back to 21 Days of Giveaways throughout the month to see all of the giveaways.)

 

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Yes, I still drank the overly sweet red wine.

Oh hey, who went home yesterday and tested out quotes from my post yesterday?  Just me? It's cool, I needed it. Yesterday kind of sucked.

Today I'm going to participate in a little link up because I'm moving tomorrow (!!!!) and I just feel like it. 

It's ok...

That I've been an unorganized mess in all of this packing and moving situation. This is by far the biggest life transition I've ever experienced.

That I had my first evil no-reply creature leave me a hate comment yesterday and it made me giggle. Kudos on taking time out of your day to write me that overly thoughtful comment and thank you for mentioning that I have acceptance in the blog world. What a sweet thing to say.

That I completely jammed out hardcore to Katy Perry - Teenage Dream on my way to work today and I'm pretty sure there were at least 4 witnesses.

That I bought some overly sweet red wine (because it was on sale, of course) last night and it made me cringe. Yes, I still drank it.

That I get overly excited when I get funny comments from readers who seem to understand my sense of humor. Makes my day, especially after an asshole evil no-reply creature comment. 

That I always have to re-watch Duck Dynasty episodes because they come on at 10pm and, let's face it, if I'm sober at 10pm it's probably because I'm sick. Or dead.

That I've been admiring my bank account because I've had to save up enough money to pay all of the move-in nonsense that occurs when you rent an apartment. It will be sad to see that pretty number go bye-bye tomorrow. Le boo. 

That this princess, this angel, and this unicorn continue to remind me why I love blogging. If I never created this blog I would have never gotten to know them and, as of late, they have helped me more than they'll ever know. #mushyface 

Non-internetz people will just never get this.

And now I need to go do lots of work so I can take tomorrow off of work.

If I'm not around tomorrow send me your good juju (unless you're an evil no-reply creature). I'm starting to get really nervous!

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Day 16 Giveaway: Furnace Hills Coffee

Wednesday 24 October 2012

Dave and Louise Baldwin were brainstorming ideas about what their daughter, Erin, who has Down syndrome, could do in the way of employment. It's no secret that there is a high percentage of people with disabilities who are either under or unemployed.

One day, on Twitter of all places, Dave saw an announcement from Jim Kales, CEO of Aspire (who are also donating coffee for the 21 Days of Giveaway!) about a new venture employing people with disabilities in a coffee-roasting business. Aspire is located in Chicago, the Baldwins live in Westminster, MD. So Dave got the idea to start a coffee-roasting business in MD and Furnace Hills Coffee was born.

Dave is chronicling how they started their business in a series of blog post starting with The Beginning of a Movement. You can also watch this video for more info about how they got started and what the company is about.

Erin is their first employee with a disability, but the goal is to hire more employee with disabilities as the business expands (and it has already expanded as they have moved the business out of the their house!).

Furnace Hills Coffee is also giving back to organizations that service people with disabilities in places around the world.

Their coffee beans come from "specialty coffee merchants who have intimate, long-term working relationships with coffee farms and co-operatives in more than 15 countries around the world."

Furnace Hills Coffee is generously donating a bag of coffee to this giveaway - thank you!

To enter leave a comment on this post stating which coffee you think you would like and then click on the +1 Do It link on the Rafflecopter widget.

To earn more entries, and to spread the word about Furnace Hills Coffee, you can like their Facebook page and Tweet about the giveaway. You can do each of those things directly on the Rafflecopter widget.

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(Refer back to 21 Days of Giveaways throughout the month to see all of the giveaways.)


 

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We should call me "drunk".

With Halloween rapidly approaching, I feel today is a great day to make my own personal list of things drunk girls say. 

What does this have to do with halloween? Well, I don't know about you but I associate drinking mass amounts of alcohol with this particular holiday (and many others) because I like any reason to drink mass amounts of alcohol - especially now that I've retired participating in the dressing like a ho thing.

Also, this may or may not be entirely from personal experience and not at all what most drunk girls say.

"Jusssss one more..."

"My feet hurt so bad... should I take them off? Maybe just for a little bit..."

"Oh my god, I LOVE THIS SONG!"

"Look, it's like I'm John Mayer!"

"Totally don't text him... make him text you." 

"Let's play a game."

"Let's take a shot!"

(every 10 minutes)

"Take a picture of me like this!"

"Where the hell is the bartender?"

"Why is this phone so hard to text on right now?"

"Hold on, let me Instagram my drink."

"Oh my gosh, I love you so much."

"Ugh, I hate you. Why are you so annoying tonight?"

"Tonight is like the best night ever."

"Oh my gosh, we're totally going to brunch tomorrow morning!"

(yeah right)

"Ew, no I don't want water."

"I'm just going to take a quick nap... wake me up in 10 minutes."

(done for the night)

"Umm... I think I'm just going to have one more martini..."

"You look so pretty."

"Like in that movie... take a picture!!"

"Don't judge me..."

"Why aren't you drinking?!"

Cheers!

That's all I've got for you today. 

Obviously I'm preparing for Sunday, which would be when I get to go to Epcot Food & Wine Fest finally. 

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"Suicide Beneath The Sky"

"Suicide Beneath The Sky"

Held hands with hope
While forewarned by fate
That the sky would be falling.
I ignored the warnings.
It all crashed around us.
Stubborn heart.
Foolish mind.
Had to leave my hope behind.
Lodged within the rubble.
Said that she was trouble.
Nothing was more absurd
Than her dieing words.
At least that's what I figured.
Felt broken and disfigured.
Days from reaching for the trigger.
Guess I was waiting to be delivered.

The setup.
The sketch.
The plan.
The schematic.
It was so awesome and tragic.
Head over heels between meals,
more thrills, high heels, deep chills,
Thick legs well fed.
Restless nights in bed
Pondering her like stories unread.
Festering fascination and infatuation.
I wouldn't own up to obsession;
Yet I clung to it amid objection.
Down to ride although unidentified
As her affectionate equivalent.
Monthly lease. Not even rent.

I was content.
I wouldn't insist.
Never could resist;
Even while she would enlist.
So willing to desist
That I ignored the list.
No way I'm on it.
No way it exists…………
Jumped over turnstile and fence
Against the grain of common sense
Even when it all felt tense
For a love worth three cents.
Phrases coined for wooden nickels.
Penned verses profound yet simple
From a heart so quick and nimble
Threading heartstrings without my thimble.

Daredevil duty in surrender.
Relentless consent to malicious intent.
Stalwart diligence in pursuit
Of branches bearing little fruit.
Our tree yields no nourishment.
Seeds planted deep in holes wide open.
Token child of love's light well rooted.
Hopeless romantic rogue to paths chosen.

Hopeless? Yes.
Love? Sure.
Learned to hope less;
Yet I still loved more.
Loved with all I had.
Would borrow more from lenders.
Thought I wore her heart tender.
Not much progression rendered.
Played possum and pretender.
Her and I.
Her for reasons why.
I as if it would never die.

She doused my sunlight.
Stole stars before midnight.
Cracked the crevice of our heaven
And crushed my clouds with might.
Fate and time screams loud.
I ignore and stare like I'm proud;
Overflow of elation like asphyxiation.
Ties never severed for sake of circulation.
Brother smothered.
Twisted sister.
Makeshift markdown hoping one day
To be addressed as her mister.

Sky falls with tears.
Moist eyes trace trickles to ears.
Hope is all I see
Since she no longer wants me.
Hope would lay with me
When my emotions were doubled
and I ignored impending trouble.
Held hands beneath rubble.

Debris cuts my face.
I still seek her grace.
Eyes scratched raw and wet.
Blood burns like mace.
Here, my dear.
Hope, draw near.
Even she forsakes me.
Hopeless love sedates me.

Nothing more to shake me.
Worked so hard to break we
That she would even berate me.
My lifeless love so unrequited.
Death of hope like life extinguished.
Hope floats; leaving me undistinguished.
No substantial trace. Just my disfigured face.
Life of love for the death of me.

Hope floats. Faith anchors.
Love desired. Faith favored.
Lust savored. Time trials.
Tread me thoughtless. Heart defiled.
Basked, wallowed and riled.
So much ambiance in my wiles.
Faith couldn't stall. The sky still falls
And love for her trapped me under.

Nowhere I'd rather be.
She means so much to me.
I'm sure one day she'll see.
My body scorched whole for we
And scattered across the sea.
Extensive stints of tears she cried;
But I don't understand why
She'd choose to lie under the same sky…………†EVL

Written By: Devin Joseph Metz

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Day 15 Giveaway: Monica & David Documentary

Tuesday 23 October 2012

Today's giveaway is a DVD of the documentary featuring Monica & David.

I saw the screening of this film at the NDSC Convention in Orlando . The film really made me stop and think about Kayla's future ... and the things we need to be doing to prepare her for her future. Things to help ensure she can live her life as independently as possible.

I love the love story between Monica & David. You can tell how much they love and adore each other. It makes me smile thinking of that being Kayla one of these days.

The film won Best Documentary at the Tribeca Film Festival and the South Dakota Film Festival. It also won 2n place IDFA Amsterdam Audience Award, and been named an official selection for Silverdocs and Hotdocs Film Festival, and opening night for the Anaheim Film Festival.

Here is an update from earlier this year: Monica and David Just celebrated their 7th wedding anniversary and are doing amazingly well.  They recently started new volunteer jobs at a local hospital, working with kids in the daycare center.  David’s healthy and continues to monitor his diabetes well.  He recently threw the opening pitch at a pre-season Florida Marlins baseball game!!  Turns out that the Marlins’ new manager, Ozzie Guillen, is a huge fan of the film and has quickly become friends with Monica, David and their family.

View the trailer here:


A DVD of Monica & David has graciously been donated for this giveaway.

To enter leave a comment on this post and then click on the +1 Do It link on the Rafflecopter widget.

To earn more entries, and to spread the word about Monica & David, you can like their Facebook page and Tweet about the giveaway. You can do each of those things directly on the Rafflecopter widget.


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Letters to My Teenage Self

From time to time I follow in the footsteps of popular post topics and today is going to be one of those times.

This weekend, while I was throwing away going through a good portion of my possessions, I found some old photos of myself which triggered the light bulb that I need to hop aboard this post trend.

 

Letters to My Teenage Self:

You'll be glad you didn't make the cheerleading team and stuck to dance, those girls you are dancing with will have your back even 10 years from now.

Being in the popular groups on LiveJournal does not make you cool. In fact, it makes you the opposite of cool. However, you will still be close with a lot of your "LJ friends" 10 years from now. Take my word for it, they will see you go through a lot of shit and still tell you you're great.

You'll also meet up with a few of those LJ friends on a thing called Blogger in a few years and be introduced to a whole new world where being a nerd is actually pretty cool. 

You don't need the blank page extensions for your yearbook. Sorry kid, you're not cool.

Judging everyone who drinks alcohol on the weekends will only make you a hypocrite once you graduate high school. Trust me, you like to party. We all know you're only judging because you're completely jealous no one invites you to their parties.

Go get your eyebrows waxed, please. It might help with the whole get-invited-to-parties thing.

You'll never be selected for homecoming court, prom court, or any of the yearbook superlatives and it's going to be ok. Face it kid, you wear your hair in ponytails every other day, your eyebrows are bushy as hell, you wear surfer necklaces when you won't put a toe in the ocean, and you have Nsync posters in your locker - you aren't a catch. Yet. ;)

You aren't going to marry him and the world doesn't actually end when he dumps you in a couple years. It's going to hurt like a son of a bitch but I promise you it gets better. 

That guy making fun of you and calling you "peep" in English class is going to try and scoop you up as soon as he finds out things with that high school sweetheart of yours didn't work out. Run. Don't get involved with that one. He's a bad seed.

There are other stores besides Abercrombie and Fitch. If you take your dad's advice on anything, this is it. He wants to take you to Bloomingdales to shop for clothes - GO WITH HIM!

I know you don't know what you want to do in life yet but keep taking pictures like you love to do because one day you will be photographing weddings. Even the weddings of some of the people sitting in the desks next to you. I just blew your mind, right?

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My meatball and my Quail Man.

Monday 22 October 2012

Oh, hey there!

I'm about 5 hours later than I prefer to post but I'm finally posting so boom.

Seems I actually have to work extra hard this week since I'm taking Friday off for my big move to the Princess Palace! 

Enough excuses on my fashionably late post, today I am going to share a little series I began this weekend while packing up my life.

It seems I have some strange obsession with collecting dog hats.

Yes, you did read that correctly. I said dog hats.

Explaination: I Instagramed this photo which led to an entire series via the Twitter machine.

This is Ella modeling her sombrero.

She enjoys margaritas (Skinny Girl only, please.) and burritos.

Give her a maraca and she will bust out some serious tunes for you to cha cha to.

Here's my boy trying to get his Christmas on already.

Halloween and Thanksgiving? Nope... reindeer have to prepare early.

Also, the mean face? He's just pissed his nose isn't red.

I may not be a human mother but I can still put large flowers on my dog.

She's really excited about it too.

He likes to party.

That's his party face.

We're a big fan of Jersey Shore.

This is my meatball. We're still working on her tan.

And this is his updated version of Quail Man.

Doug Funny used a belt but Seb man is all about the tie. 

He's ready to save Patty Mayonnaise.

But not Skeeter. That name is messed up.

And there you have it, friends.

Stay tuned tomorrow to see what other sad excuse for a post I come up with.

Sorry... I'm moving, cut me some slack. 

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Day 14 Giveaway: Corbin-Smiles Artwork

Corbin Chanter is a young adult with Down syndrome who has a passion for acting and dreams of becoming a movie star.

Corbin is also a talented artist who has sold pieces all over Oregon.

His artwork is fun, bright, colorful and makes me smile looking at it! Corbin's artwork can be found on t-shirts (my favorite is the "Life is Beautiful" design; I just might have to order a kid's size for Kayla!) and cards including Holiday, Birthday, and Special Occasion designs.

Despite a recent cross-country move, Corbin is generously donating a pack of his cards for this giveaway - thanks Corbin!

To enter leave a comment on this post stating which of Corbin's designs you like and then click on the +1 Do It link on the Rafflecopter widget.

To earn more entries, and to spread the word about Corbin-Smiles Artwork, you can Tweet about the giveaway. You can do this directly on the Rafflecopter widget.


  a Rafflecopter giveaway

(Refer back to 21 Days of Giveaways throughout the month to see all of the giveaways.)

 

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