Monday, January 23, 2017

Weekly Challenge #300

HOLY COW!! OH MY GOODNESS!! CAN YOU EVEN BELIEVE IT!!

Three Hundred weeks ago i started this little community here on the world wide web. 

Three Hundred weeks ago. 

Three Hundred weeks ago i couldn't have guessed the journey the blog would take and where it would take me, both literally and figuratively.  

Three Hundred weeks ago i didn't know the amount of connections that would be made. 

Three Hundred weeks ago i couldn't have imagined the wealth of friendship i have found.  

Three Hundred weeks ago i thought i'd just try my hand at this for challenge blog few months and see how it goes. 

Three Hundred weeks ago i was a totally different person who has grown in incredible ways and has changed in ways i couldn't have foreseen. 

I'm going to just jump right into here because i think this week's challenge is really fitting for this occasion.
If you've been following my blog and my facebook page for some time, you may have guessed that this challenge would be coming.  This Tuesday, January 24th, is Moebius Syndrome Awareness Day.

In the beginning - i came to zentangle for the art.  I was drawn to it because it was familiar.  Then Artoo was born and everything about his birth and his hospital stay and his eventual homecoming was. So. Hard......and i clung to zentangle as my life line in those first months - and eventually it led me here because i knew that i NEEDED to keep a zentangle practice in my life.  I needed to make it a priority because, honestly - this challenge blog? Well.  It saved me back then.  It gave me something i had to do for myself at least once a week, and in the beginning that was all i could manage.  It was all i could do some Sunday nights to sit down and write and create a tile... and a lot of those challenges in the early days i was totally living by the old adage: Fake it 'till you make it.  

And it helped.  Writing this blog for the past six years has sometimes been a challenge, sometimes a chore, but i keep coming back to it because it helped me pull myself out of my own real life challenges, even if it was just for Sunday night.

Weekly Challenge #300: "Moebius Syndrome Awareness Day"
Artoo, the great
My son Artoo has Moebius Syndrome and every year I post this challenge about Moebius Syndrome Awareness Day.  I do this because i love my son so very much.  He is the brightest, the silliest, the sweetest most sensitive and emotionally mature not to mention adorable kid with buckets of charisma and an astounding memory for details and facts.  The kid is so freaking charming.
Grade 1 is awesome
Moebius Syndrome is HELLA rare.
being silly is fun!
Like literally 1-20 in a million rare.  I'm not making that up.
I think he makes this look work
It is a nerve disorder that is present at birth.  It's the cranial nerves, to be specific, that are either underdeveloped, broken or missing causing facial paralysis.  People who have moebius syndrome are on varying degrees of the Moebius spectrum.  For Artoo he has zero movement in his eyebrows, and this eyes don't move from side to side.  Those nerves are missing.
cutest paleontologist ever
Artoo has difficulty with speech because there is some paralysis in and around his mouth - and it's kind of like speaking to someone with an interesting accent.  After a while you just learn how to speak Artoo.
Preemies are magic
When he was born the doctors told me that i would never see him smile.
can i get a hell yeah?
Doctors don't always know everything.

People with Moebius Syndrome can have low muscle tone and can be uncoordinated or have trouble with balance, like Artoo does. And/or they can be born with some missing limbs or underdeveloped or webbed digits, and can also have other disorders, which Artoo does not.
budding artist - oh, my heart
I tell you these things and i share his pictures with you because it breaks my heart that people who have never met him make assumptions about him, based on his physical appearance.  It causes me physical pain when people talk over him and ask me "So, what's wrong with him anyway?" as if he wasn't completely fully aware that they are talking about him.  SPOILER: He is.
he deserves a million trophies
I kills me that he might ever be made to feel that he is less than because a few of his nerves don't work, like - f'real, that's a shitty reason to feel like you don't or can't belong.  It would be just as unfair if the world decided that everyone with green eyes was weird or that their eyes looked funny and no one wanted to be your friend or talk to you....
his future album cover
Artoo wants nothing more than to grow up and be in a comedy band like his current idol, Weird Al Yankovic.  He loves the colour green.  He recently discovered cinnamon buns (at christmas) and thinks they are the best flippin' thing since sliced bread.  He likes to watch Spongebob Squarepants and believes that fart jokes are the height of comedic sophistication.  He can spell paleontologist without breaking a sweat and he can read backwards!
We love Artoo

He can tell you, to the second, how long his favourite songs are and which album it's from and when that album was released.  He has an excellent singing voice and loves dancing.  He likes to write lists and he likes to write fiction stories about Weird Al and his school friends going on field trips to the zoo.  Sometimes the way he talks other grownups kills me because he's so matter of fact like he's like a tiny grownup himself.
ice cream sundaes are the best
I make Moebius Syndrome Awareness Day the weekly challenge each year because i am in the unique position where, for some reason, thousands of people care what i have to say sometimes.
fair rides for the win!

 Also it's in the hopes that i may reach just one more person; someone new, someone who had never heard of Moebius Syndrome so that when some day in the future they are fortunate enough to meet one of these amazing people they will remember that one blog post they read that one time, and they might remember that underneath the face they're unfamiliar with is a person who is warm and caring and funny and would really really really - more than anything - just wanted to be treated as normal.


 I make it the challenge so i can tell you that it's NOT a disease.
It's disorder.  It's not contagious.
well, unless it's goofy camping faces... THOSE are fully contagious
 This isn't something that "happened to" our family.  Our lives are totally different than i would have ever imagined three hundred and some weeks ago.  But were it not for Artoo none of this would have happened.  We are discovering, as we go, that we are immensely blessed in so many ways.  Ways we are aware of, and ways that i'm sure will make themselves known in the fullness of time. (Wooo!! that was a five dollar phrase! The fullness of tiiiiime)


But simplified; Because Artoo was born i really and truly embraced tangling.  Because i needed to keep tangling i started this blog.  Through this blog i have met (online AND in real life) the most supportive, caring, generous, giving and amazing souls who would never have otherwise come into my life!   

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 if you can.  I'm going to send the link to the Challenge 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 hashtags: #moebiusawareness #moebiuspurple so that the Moebius community will see them there as well.  

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 Challenge 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!!

also - the colour for MSAD is Purple, so if you want to incorporate purple into your tile, feel free.  Please consider wearing purple on Sunday, in support of our big man Artoo - The first baby to attend a CZT Conference in utero and resident CasaDiva cutie pants!!! :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 #moebiusawareness 

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

have a great week!

And if you're on the Zentangle Mosaic App or Instagram - i'm @iamthediva - come on by and follow me, and i'm going to be using hashtags on the app for each of my weekly challenges. So if you're game - use the hashtag #DC300(Diva Challenge #300) for your tile this week! You can also search in the app for people's contributions to the challenge by clicking on the hashtag from inside the app, or using the search function. 
If you have a blog or host your images on line (like on Flickr or Picassa or Pinterest), 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 love the challenge as much as i do, please consider leaving a tip (tip jar in the side bar).  I write this blog for free and have no plans to make it a paid for service in the future. 
 Buy me a cup of coffee, or a new Micron pen!! Click the tip jar on the side for a monthly tip, but if you just wanna throw a few bucks my way THIS LINK

will give you a one time option.    A very big thank you to those who have kept me in hot cups of joe. ;)


29 comments:

  1. Hi Laura ! Here is a year that I do the Diva challenge, I started with #252, and I didn't know the Moebius syndrome before following your blog. Throughout the year, I have seen the photos of your family, and Artoo is really an adorable little boy who has his place in your family. Your today post has greatly moved me, and I support you deeply in your action to give a normal life to which Artoo is entitled. Friendly, Chantal (please, excuse my bad english, I'm french and not very gifted with foreign languages)

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    1. Merci Chantal. Votre anglais est super! Beaucoup mieux que mon terrible français! Je n'ai pas parlé français depuis le lycée. En fait, j'ai dû corriger les ordures horribles que j'ai essayé d'écrire avec cette traduction de Google. Ma tentative originale était ridicule

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  2. Me too, discovered the Moebius syndrome after reading your blogposts. On many pictures I can see that Artoo is a very happy and wonderful boy, thanks to his parents and brother.You are doing a great job. I like your challenges and join them when it is possible. Congratulations with this anniversary and succes for the future!!! Kind regards from Belgium

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  3. Dear Laura, I have seen that you have a weekly challenge, but never figured out how to participate. I am not good with all of the online communication tools/apps. I don't do Facebook because it feels like a deep black hole. Today I saw your post about Moebius Syndrome on Mosaic. I taught deaf children for 32 years before I retired. I understand your frustration with people jumping to erroneous conclusions and avoiding direct conversation with someone who is different than they. Thank you for educating me about Moebius syndrome. Your story has had a profound effect on me. It is so wonderful to see your family face these challenges together. God bless you all!

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  4. Laura and family: Re: the number 300. A grandmother's take on the number is that the 3 represents the TRINITY who watch over your family......and the two zero, well, those are the eyes of a wondermous child who looks at a beautiful world. Love you all ---- much.

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  5. Hey Laura. Great job on today's posting. Very moving and informative. I gave my wife the link to your blog and she enjoyed the story very much. I am working on her to get her into Tangling as well. She's more receptive than ever now. I have posted my rendition of Moebius Awareness to my blogspot. Go see because I left a message for Artoo. You are a great mother. Keep up the good work.

    Duane.

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  6. Laura, thank you for that great explanation of Moebius Syndrome. I'm beginning to understand a little more. Artoo is such a great kid. I love seeing all the pictures. And Chewie is a great kid too. He's so great with his brother. You and B-Rad are great parents. With that being said, I think this Challenge is fantastic. I had a great time doing my tile. At first I thought it was a bit busy, but at 2nd look, I like how it turned out. The Crescent Moons I put in there look like eyes looking around at everything, taking in the whole world. Thanks for keeping up this wonderful blog and the weekly challenges.

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  7. Congratulations on 300!!! You have the fortitude of a great warrior! So happy to have found you and your stories all those years ago. You are a precious gem in our community. Thank you, Laura. Love to you and yours. ❤

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  8. Congratulatons, dear Laura for the 300th challenge. Thanks for sharing your weekly family stories, especially about the strong, little man Artoo with this rare syndrome. Heart touching. I hope the best for you and your lovely famile. Send you my love. <3 Huggi Beate

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  9. Hi Laura, I started participating in your challenges last year and it was been a wonderful way for me to feel connected to the Zentangle community. Thank you for doing this for me and all the other tanglers. I did some research on Moebius Syndrome after reading this challenge. I will be spreading awareness of this syndrome whenever I can. I started with my family last night. You are an inspiration and Artoo seems like an amazing person in addition to being adorable! Thanks again for all you do!

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  10. You and your family are gentle warriors. I am so grateful that you found Zentangle to help you on the journey. Your story is why I continue to teach Zentangle as it helps everyone in some way. We all have a back story which is something we tend to forget when we witness the unique teachers among us, and your son teaches us all. Keep going, dear Laura, keep going. Bright blessings to you and your family.

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  11. Thanks for persisting with these challenges. I've been a regular contributor since Sept 2015 after Shelly Beauch CZT suggested I do so. I even started my blog so that I could participate and since then have discovered this most amazing global online community of Tanglers. You are the glue that holds many of these people together. Thanks.

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  12. Congratulations, dear Laura for the 300th challenge!
    I create my first tile for Laura´s challenge #123 in June 2013 ... 3 1/2 years ago! Week after week I accompanied you and her wonderful family by reading your blogposts. I admire your energy and warm-heratedness to manage all the adversities of life.
    Best wishes to you and yours, Annette

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  13. My third one...so proud to participate in this!

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  14. Congratulations on your 300th post! This was just my second one to participate in. (But then, I'm a total newbie to the tangle world...been drawing since I was little, found tangling in December 2016. :-))

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  15. I have never heard of Moebius Syndrome so I appreciate you telling us about it. I have a 26 year old son with Down Syndrome. He is considered non-verbal, but with sign language and voice he says around a dozen words. He has truly been a blessing in our lives. Now that I am a widow I was looking for something to fill my evenings with, and that is when I discovered Zentangle. I have been taking a class from a CZT and loved it from the beginning.

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  16. Hi Laura, I've missed a few posts in recent months and haven't done the Challenge for a while, but I couldn't miss this one. Long may your blog and the Challenge continue.

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  17. Congratualtions on the 300th challenge! If it wasn´t for you Laura, I wouldn´t have known about the Moebius Syndrome. I have followed your blog and your challenges for about one and a half year now and read about Arto and the rest of your family. It is a wonderful reading and you give so much not only with the challenges but with the rest you are giving to us. It is most important that you let us know Arto´s wonderful personality, then we are able to understand much more about the Syndrome that is so rare. All warm thoughts to you and your family! I am grateful to be among those who participate in this celebration!

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  18. Hi Laura... Congratulations on number 300, and thank you for sharing Artoo with us all these years. <3

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  19. Thank you Laura it is truly moving to learn about your family, much love to all who are trying to deal with life and how this Syndrome has affected them.

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  20. Congratulations, Laura! You have done so much for Moebius Syndrome Awareness, and I thank you for sharing Artoo's and your family's journey. I am always inspired by you!

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  21. Congratulations on #300. I am not sure how many of the Moebius Syndrome Awareness Day challenges I have participated in, but it has been a few. Am glad to participate in this to increase awareness and support the families dealing with this. Have looked forward to seeing the pictures of both of your boys as they have grown up. Thanks for sharing. One of the things I was finally able accomplish was to come up with a way to deconstruct the logo so it was a reasonable facsimile.

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  22. Congratulations on reaching Challenge #300, and thanks for continuing to challenge us, and for raising our awareness of Moebius Syndrome.

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  23. Congratulations! And a huge thank you for sharing your creativity and your wonderful family stories. Like many others, I had never heard of Moebius Syndrome before. I discovered your blog about a year ago and have been following it since. And now I thought that no. 300 would be a perfect time for me to join the fun. All the best for you and your family from Germany! Heike

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  24. Congrats on 300 Challenges and thank you for letting us share in Artoo's journey. It is such an honor.

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  25. 300 challenges; how wonderful! I always enjoy seeing the pictures of you and your terrific family. The ones in this post really convey the closeness of all of you. Artoo and Chewie are very special young people. As for Moebius Syndrome, I am happy to do anything to raise awareness. When I first encountered your challenge, it surprised me; as the only Moebius I was aware of was in knitting or crocheting. I was hooked on creating Moebius scarves and bowls, etc.

    So thanks again for all that you do: challenges and more.

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  26. Laura, Our Best Good Wishes on the Occasion of the 300th Diva Challenge. We are so proud of you and your amazing accomplishment. It has been an enlightening journey for all of us to hear about and see the day to day challenges you are faced with. Artoo has been blessed with the perfect parents to guide him through his life. You can see his comfort in your family, and yes, I could see that beautiful smile. Thank you for letting us into your life and being such a big part of ours. Love, Rick and Maria

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  27. Me too, I didn't know about Moebius Syndrom until I read your posts. 300 challenges, Wow! Congratulations! :) I have participated in several of your challenges, I'm not always able to every week. Unfortunately, I missed this one, but am glad I was able to come back and see your post and learn more about Artoo. What a cutie! :D

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tangle me some zen, baby!!