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|
|my tribute to the Late Great David Bowie|
|i have all the prouds|
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.
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.
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. ;)