Monday, January 20, 2014

Weekly Challenge #151

Happy Monday everyone!
First of all, as always - a few house keeping items:
  • If you're NEW here I've created a few tutorials to help you out. You can click on the links above or:   See "Getting Started" and "Tutorials"
  • To see all the past weekly challenges - click the tabs above (they are updated sporadically, please bear with me)
  • Please grab the button for the Weekly Challenge (on the right sidebar) to display on your blogs! share the fun!
  • The limit of submissions to the slideshow is TWO, but please feel free to post as many as you like to your blogs. A note about entering your images for the slideshows: Those of you without blogs or image sharing sites like flickr or picasa, please continue to email your images to weeklychallenge at mail dot com (not gmail, just mail). Everyone else - Please PLEASE PLEASE submit your SITE SPECIFIC URL in the linkey machine. I understand if sometimes you forget, that's fine. Compiling the slideshows is a lot of work, so any help in this regard is appreciated. Also, please do not use the Weekly Challenge as a way to drive traffic to your website if you are not participating. not cool.
  • i have set up a newsletter, sorta. You can subscribe to it HERE or in the Subscribe tab above! Now, the idea for this newsletter is NOT to send one each Monday before the challenges. That is too much work.  But i thought it might try to write a newsletter once a month-ish... Frankly, people kept asking me if i had a newsletter, so i thought i'd give it a try.
  • I know that some of you have told me that the paypal button does not work, and some of you have had no trouble, i'm not sure why it's inconsistent, I've just redone the code...again.... If all else fails you can donate to my paypal address which is madam_diva (a t) yahoo (d o t) com
Hello my Tangly friends!!
I hope you all had a great week and are ready to tangle....

First, let's catch up on all the slideshows that went live this week! In case you missed them:

which makes us just about all caught up.

Also, my mixed media post is up at ArtistCellar.com, go on over and say hi!!

This week at Casa Diva, i've been continuing my quest to remain OPEN to the direction that the Universe is pulling me.  And i have to say that so far 2014 is pretty cool. 

I received some amazing news about one of my closest friends, I got a really good offer, too good to pass up.... (Details to follow upon all things confirmed.)... i was able to attend the Symphony Pops Pink Floyd Tribute with b-rad - and i had probably the best burger i've ever had in my entire life.  :)  Like, seriously, it was so good.  i'm drooling right now.  

CHEESE!!
We also had a house full of friends and lots of laughing.  How was your week?

On to the challenge!!

Weekly Challenge #151: String Theory: Moebius Syndrome Awareness Day (Be warned, image heavy!!)

These brothers love each other so much...
also, when i pointed it out that they were wearing opposite coloured clothes
they giggled hysterically for several minutes and demanded that i take their picture.  
Moebius Syndrome Awareness day is Friday, January 24th.

For those of you who've been around since the beginning you know that my son, Artoo, has Moebius Syndrome.


For all my new friends - Moebius Syndrome is a congenital nerve disorder affecting cranial VI and VII nerves controlling the lateral movement of his face. Moebius is a spectrum disorder - so some cases are more severe than others.


We've been extremely lucky that Artoo's symptoms haven't been too difficult to adjust to.


The first three years of his life have been a struggle...


He sees more specialists than i care to count.


Without going into too much detail about his condition; we deal with delayed developmental milestones, eating/feeding issues, club feet, low muscle tone - just to name a few things, and of course - being unable to deal with viruses and bacterias, he gets very sick. very fast.


Not a lot of people know about Moebius Syndrome, which is not surprising given the odds of having a child with Moebius is 1-2:1,000,000


yes.  you read right.  one million.


When Artoo was first born and we'd take him to the hospital for emergencies, we'd tell the doctors that he has Moebius Syndrome and they would say: "What's that?"  We've had to become the experts on the syndrome, and the advocates for our child, finding our way through the haze of the medical system.


i also want to stress here that Moebius Syndrome is NOT A DISEASE, it's a disorder affecting his nerves.  The word disease implies that he is sick, or that he could 'get better'.   A lot of people assume that people who have Moebius Syndrome are mentally disabled because of their facial paralysis.  This is simply not true.  It does not affect intelligence, in fact - Artoo is really super smart.


He's now 3.5 years old and he knows all his numbers and letters, and he can operate an iPod or iPhone better than I can.  He loves to take play with his older brother and he really loves to sing and dance.  It's not uncommon for him to sing out loud, at the top of his lungs... in places like the doctor's office... or the grocery store... or outside of Chewie's kindergarten class.

DINOSAURS!!
If you ask him what he'd like to be when he grows up, he will tell you: A Palaeontologist.

To raise awareness for this disorder is this week's Challenge. Use the Moebius Syndrome Foundation's logo as your string, or create a moebius strip out of paper and tangle that... or some other awesome creative thing that i haven't thought of.


Here's two versions of the logo for you to work with.  You can print them or trace them or draw your own.

For those of you who remember this challenge from last year, please don't submit your tile from last year.  I'm going to send the link to the slideshow to the folks on my Moebius Syndrome support group on facebook, i'd love for them to see all your amazing artwork so that each and every one of them will know that they are not alone and that we are aware!!

If you are going to post your piece, also, to Instagram (@iamthediva), Twitter, or Facebook - please consider using the hashtag: #MSAD14


OH, also - the colour for MSAD is Purple, so if you want to incorporate purple into your tile, feel free.  Please consider wearing purple on Friday, in support of Artoo - The first baby to attend a CZT Conference in utero! :D.

If you do, and you'd like to send me a photo, you can send it to lauraharmz (at) gmail (dot) com, or post it to the Challenge Facebook Page with hashtag #MSAD14

Thank you everyone for being so supportive of our family!! it means so much to us.

have a great week!


If you have a blog, add the site-specific URL where your tile is posted to the linkey machine below! Don't forget to link back here so that others can join in the fun! (if you don't know how to find this, you can see my half assed tutorial here) Also, please feel free to come back often and visit the links of those people on the linkey machine - don't forget to leave a comment or feedback, everyone loves feedback. ;) 
If you don't have a blog but still want to participate, you can email your tile to me and i will put it in the slideshow. (send submissions to: weeklychallenge at mail.com) [not gmail, just mail]. I just ask that you put in the subject line: Challenge # ________ 
The deadline for each weekly challenge is Saturday night so that i can round everyone up by Sunday. What this means is that i will stop adding tiles to the slideshow on Sunday. You're still more than welcome to do the challenges and add your name to the linkey machine. - although to be honest the deadline is pretty forgiving.
 I will be more diligent with the linkey machine - by editing out the ones that don't work, the doubles, the links that lead to nowhere, the links that go just to blog home pages (this is why we need those site specific urls), and the spam. And there is some spam. PLEASE do not put your *home* page in the linkey machine... please? for me??

22 comments:

  1. I had never heard of this condition until I first found your blog. It's such an important thing to make people aware of and tangling is a perfect vehicle - using the incredible Moebius string. All the best. Axxx

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  2. Thank you Laura, for another great Challenge; your tile is absolutely gorgeous!!!
    Also thank you for the beautiful pictures of Artoo and the one with his big brother, with the opposite color in their clothes.
    My husband is spastic, so we know about some (studpid) people that treat him like he is mentally disabled. And even if he was, all people have a right to be treated with respect. I hope life will be kind for Artoo!!! This awareness is most important if we want to change the attitude of some people.

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  3. I've only heard of this condition because of your blog. In our house, we also get to deal with a rare disorder that few have heard of. In our case, it's a genetic metabolic disorder and while it's not a spectrum, there are different variations of a theme, so to speak.

    The nice thing is that we live in an urban area so a few doctors around here have actually heard of the disorder and the ER doesn't look at us like were insane, panicky parents, when we bring Little Man in for stupid things like coughing til he pukes.

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  4. Laura, I love your tile! It is so warm and wonderful and it represents Artoo in a fabulous way. Thank you for the challenge!

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  5. Hi Laura, and all. I am brand new to this blog and challenge and very excited to be here! I am absolutely addicted to tangling, even though I am fairly new to it. I think I have found my people! Thankyou for bringing Moebus awareness to my attention. Their logo makes a great string! I clicked on the place to find out more about the challenges and got an error code that it doesn't exist. Would love to know more about the rules/procedures. Themixiepixie@aol.com . Thanks!

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  6. Laura,
    You are a remarkable woman! Hugs to Artoo and his big brother. I will be posting to my Facebook pages on the 24th!
    Diane

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  7. I finally realized that I COULD add pages to my blog, and learned how to do it. Now I can use the linky machine when I complete a challenge! Thank you for sharing these with us!

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  8. Laura, I love your Moebius Tangle!!!I hope Artoo and your whole family feel the love that comes from everyone's Moebius Tangles!! You are an amazing woman and it is know wonder why you create so many pieces of art!!! Being that I am still fairly new at Zentangle I did not know Artoo's history. So I am so thankful that you shared this info with us and made me aware of Moebius Syndrome!!! God Bless you daily and abundantly!!! Hugs to all!! :0) Share Humanity (and you did)

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  9. This is my first time entering the challenge. And I wanted to thank you for for providing a great and educational template!

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  10. Thanks for the good information on your son. I am fairly new to the challenges and although I was here for the Moebius challenge last year, you did not go into it quite as thoroughly then as you did this week. I am very appreciative of learning more about this. My prayers go out to you.

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  11. Thank you for the challenge and also for the information about a syndrome which I knew nothing about, until now. Using tangles is a great way to share information and awareness x

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  12. It's an honor to participate in this challenge for the 3rd year, my how time flies. Thanks for sharing Artoo's progress and your wonderful family photos. Here's to your Palaeontologist! Love your tile and this challenge, both are wonderful!

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  13. Thank you for this Challenge and making us aware Moebius Syndrome. Thank you for all you share!

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  14. Hugs to Artoo! It has been so much fun watching him grow over the years of doing these challenges. Love you tile too!

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  15. Thank you so much for sharing with us!

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  16. Sorry, about my first post ( #42 )... you can only see the image instead of the post it self. nr. 43 is the right one ( I hope my english isn't too bad )

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  17. Fun challenge with a purpose! Thanks for letting us share our art.

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  18. Laura, I don't always post on this page, but love reading about Artoo and your family's journey. This challenge was extra special.

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  20. Laura, I had never heard of Moebius Syndrome before your explanation as part of this challenge. The only Moebius I knew about was the knit or crochet kind, of which I had produced quite a few, and the mathematician for whom it is named. Thank you for sharing the information. And here's a big hug to Artoo, and his big brother as well. May they always stay as close as they are now.

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tangle me some zen, baby!!