Monday, January 22, 2018

Weekly Challenge #348

Good Monday Morning!!

Here's your challenge for this week


Weekly Challenge #348: "Moebius Syndrome Awareness Day"

This Wednesday, January 24th 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 and have dealt 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. And he'll be the FIRST to tell you so. 



He's now 7.5 years old and in the second grade!  He's incredibly smart, and he really loves to sing and dance. He writes the most amazing stories and draws pictures - and it's not uncommon to find him in his room reading or making his own comic books.



He's in his third year of piano lessons and he loves listening to Weird Al Yankovic and Fitz and the Tantrums. 
He also bowls in a league with his friend Ellaina - and he likes to bounce on the trampoline.  


One of the "BEST DAYS OF MY LIFE" was when he and i went to see Fitz and the Tantrums in concert this summer. 


If you ask him what he'd like to be when he grows up, he will currently tell you he wants to be a musician and an author.


While he still has a ways to go, he is getting braver at trying new things and having new experiences... 

Like swimming in the lake and going on the tube, or camping out in the backyard in the summer with just his brother



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.


If you are going to post your piece to Instagram please tag me (@iamthediva), and  consider using the hashtag: #MSAD2018


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 Wednesday, 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 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
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So before i end this week's post - i just wanted to say thank you to everyone who liked and shared my post on facebook this week.  It seems that facebook dropped my page from it's radar or changed its algorithm, or both, and my post about last week's challenge only got one view - where it typically gets a few thousand organic engagements.  Facebook has also been pretty aggressive lately about asking me to pay to boost my posts, but that's not something i can do - being a stay at home, unemployed, mom.  Once the word got out it seemed that LITERALLY thousands of people messaged me to tell me that they thought that i had quit issuing challenges all together because they were not being notified by facebook each week.   I'm still here!! i promise!


This is my facebook page (click link) - a few people have suggested that facebook doesn't spread posts that have clickable links to outside websites as often so i will try directing people to my website link on facebook.  So please be sure to like the facebook page but also to follow it to make sure you receive my posts in your feed - if facebook is your jam.   Also - if you want to follow my youtube page - make sure you click the little bell on my page to get notified when i post a new video (if it's any incentive to you - i generally post the videos on Sunday Nights.... BEFORE the monday morning blog post goes live... so you'd get a bit of a head start)

(liking and sharing my posts is also appreciated.... but none of this is necessary) my thanks to all of you have been liking and sharing.  love love love.


have a great week everyone!
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 #DC348
(Diva Challenge #348) 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. ;)
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2 comments:

  1. What a wonderful explanation of what your son has. I've been the group here for several years so I've read about him and the disorder before. But this was an especially nice description. You and your husband and older son are terrific and amazing caregivers, supporters, and full of love for that child. He is so lucky to have you!!! And we all love him too.

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  2. Before I started following your challenges, I never heard of Moebius Syndrome. Thank´s Laura for giving all this information and for letting us participate in the celebration of Moebius Syndrom Awarness Day!

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tangle me some zen, baby!!