Monday, January 18, 2016

Weekly Challenge #251

Happy Monday everyone!

It's been a very frigid week here in Saskatoon.  Temps have been down in the -35 to -40 range. (For reference -40C is the same as -40F) so we've been hiding indoors.

Perfect weather for Hot Chocolate
I've been doing some work in my Art Journal this week.  i seem to do more art in the winter months because... oh yeah, -40. lol
my tribute to the Late Great David Bowie
Artoo had show and tell this week, and he did a really great job telling his friends about his trophy and answering their questions.

i have all the prouds
 I'm also really excited because i get to go and be Helper Mom in Artoo's class this Friday for Moebius Syndrome Awareness Day...

Weekly Challenge #251: "Moebius Syndrome Awareness Day"

This Sunday, January 24, is Moebius Syndrome Awareness Day


For those of you who don't know, my son Artoo was diagnosed with Moebius Syndrome when he was born.


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. 



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.  There's currently about 5,000 people on the planet with Moebius Syndrome 


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 5.5 years old reads just as well as his older brother.  He's incredibly smart, 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...  Much to everyone's delight.

He's taking piano lessons and he loves to tell stories and play games. 




If you ask him what he'd like to be when he grows up, he will tell you: A Bona Fide 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 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 hashtag: #MSAD2016


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 Sunday, 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 #MSAD2016

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 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. ;)

28 comments:

  1. Thank you for sharing about your family, Laura. I'm sorry this happened in your family and inspired at how well you handle it. Both your boys are adorable!

    Will do my best to complete this challenge for sure!

    Blessings,

    Debbie Butterfield, CZT 19

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  2. Two things -- no, three. First of all, your kids are absolutely adorable. Second, I love the fact that you have just educated me about a medical condition I'd never heard of, and did it with just the right recipe of clarity, honesty, humor, and thoughtfulness (love this -- I have epilepsy, have a son with Tourette's and autism, and two with Hashimoto's. I have pretty severe RA. In my experience, it's sometimes hard to share that information when people ask without becoming frustrated, sounding pedantic, or getting defensive... so, you rock). Third, I LOVE your Bowie page, which a friend shared with me because she knew I love both Bowie and art journals. So, yes, I'm a fan, and you made me happy today.

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  3. I had written a long winded message but it was just too wordy...you and your pictures have inspired me to pick up my pens again today an actually create something..and that may not seem like much,and you probably hear/read that a lot but it's a wonderful thing..

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    1. I agree. I have hard days too and I had no problem picking up the pens for the people affected. Artoo is an inspiration!

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  4. So many photo's of Artoo and he is so cute! Thanks for sharing them.

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  5. This is my first time posting a tile here! Thank you for teaching me about this syndrome. As an elementary school teacher, I am humbled daily by the beautiful diversity in my students. It is wonderful to be part of this online community that has such wide ripples!

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  6. Oh those photo's are so cute, I think my favourite one is where Artoo is wearing a dragons tail! He must have known I was going to blog about dragons this week lol. Thank you for explaining Moebious Syndrome, I hadn't even heard of it and I was trained as a sick children's nurse at Great Ornond Street Children's Hospital London were we saw all sorts of rare syndromes. I think you are amazing, looking after the children, it is so hard on the parents with things like this.

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  7. Thank you Laura for sharing your and your familys story in the way you do! And the wonderful pictures of Artoo. I hav been working as a special teacher for several years, wich means I have been working with children and adults with various kinds of problems. I have heard the name Moebius syndrom, but I didn´t know much about it so I am glad you introduced us all!I know how much it means to make things known and put into the light in the way you does! You have a wonderful family and wonderful sons!

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  8. Hi Laura and all,
    Great challenge, as always, Laura. Thanks for taking the time to provide this, as well as the personal notes on your great kids. The photo gallery is a kick!

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  9. that pic of Artoo with a dragon tail... I can't take it. That is officially the cutest thing I've seen this year. or possibly ever.

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  10. Very.Cute.Photos., but I can't get my head around minus 40.

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  11. I enjoy learning about your family as much as I enjoy the challenges. Thanks for this.

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  12. I try each year to think of something different and each year I decide the symbol says it all. Thank you, as always, for sharing.

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  13. What a great way for us to learn about a condition so many of us didn't even know existed and for us to have the opportunity to spread the awareness through this week's challenge. I agree with Kim Morgan - your simple and honest style was so informative - bless you all

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  14. Love your little guys, and glad to help spread awareness of the disorder in some tiny way. :)

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  15. Thanks again for sharing your life with us. I learned about MSD, laughed out loud at your photos--oh! the dinosaur tail!--and shivered at the thought of 40 below! You rock.

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  16. It never fails to amaze me that we are all given the same criteria with each challenge, and yet there are so many wonderful and completely different variations. I love looking at everyone's submissions!

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  17. Great challenge and stay warm! This California girl can't even imagine -40 degrees

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  18. I am glad this was the week I decided to check in again, as I feel good about helping to advertise the Moebius Syndrome site for you, Laura.

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  19. Your boys, all of them, are blessed to have you as their champion! Have a brilliant day! Cheryl

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  20. Thank you Laura, for sharing so openly and lovingly about Artoo and his/your challenges. Your strength, candor and humor are amazing, a model for us all.

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  21. A wonderful challenge. It's so great to see that you do so much to raise awareness for Moebius Syndrome all ober the world. Your boys could be so glad to have you.
    Greatings Tina

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  22. Really enjoyed seeing the pictures or Artoo. Was nice to see the progression and how much he has grown.

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  23. Loved the pictures of Artoo this week, What a beautiful spirit he is! I have been part of this community for almost 2 years now and like many others, I am sure, it has been a blessing in my life. I was inspired to go the the Moebius Syndrome site and wander through the website and the thing that struck me most about all of these wonderful people is that you could see the "heart" that they all had, regardless of what their faces said. Such beautiful people! I only wish we could all radiate that "heart" and take care of each other. I really loved this challenge and plan on wearing my purple right along with you tomorrow.

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  24. I had never heard of this but I am glad he and family are doing well!
    God bless you all!

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  26. Sorry for posting late...
    This is the first time I ever tangled... I've enjoyed it very much. First we had to install a new blog.. ;)
    Many greetings to Artoo

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  27. I've just set up a new craft blog just so I would have a place to share my Diva squares! Hope this first experiment works out! I've taken inspiration from your challenges for several months now, but this is the first time I've figured out how to post one.

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tangle me some zen, baby!!