Rare Disease Awareness emblem for Clara and M-CM Syndrome

Today is Rare Disease Day, which is a day meant to spread awareness about rare diseases.  My daughter Clara has M-CM (aka MCAP) Syndrome, which stands for Megalencephaly Capillary Malformation Syndrome. M-CM is very, very rare, and not a lot is understood about the syndrome.  There are only around 200 people diagnosed with it worldwide.  M-CM causes body and head overgrowth and abnormalities of the skin, vascular system, brain and limbs.  We know that M-CM is a spectrum, so some children have only a few issues and some children are affected with more serious neurological symptoms, delays, and/or health problems. The children we've met online are beautiful, brave, and very strong.

M-CM is the reason for most of the health concerns Clara has had in her young life, such as: her heart conditions (PDA, ASD, Enlarged Heart, and Fetal Atrial Flutter), Pulmonary Hypertension, Macrocephaly, and her gross motor and speech delays. We have been very lucky that most of her issues are fixeable, maneagable, and/or mild so far.  We feel incredibly blessed to be followed by a number of medical experts at Sick Kids hospital, as well as Early Intervention, who all care so much about Clara.

As for Clara's future, we think it will likely take her longer to walk and talk, and she may have some ongoing health issues, she may even have some delays, but we feel that her future is still bright. She doesn't let anything stop her so far. We are so proud of Clara and love her with all our hearts!

Here are some links with more information:

M-CM Network - Some of the other online info about the syndrome is out of date and/or innacurate.  M-CM.net is run by Christy Collins, an M-CM Mom and advocate. M-CM.net provides the most accurate and up to date info about M-CM.

Rare Disease Day - is an initiative to raise awareness about all types of rare diseases (not just M-CM.)It

If you want to know more about M-CM Syndrome, feel free to contact me!

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Family cheering their favourite ball team on TV

We're not big sports fans at the Walker household, but we're definitely Jays fans.  I became a Jays fan back in the heyday of the '92 World Series (I may, or may not, have waited in line for hours at a mall one day to get a ball signed by Pat Borders.) Too bad they lost the series, but I have no doubt they'll go all the way next year.  They earned a lot of fans who will be there to cheer them on for the whole season.

I drew this for #ComeTogether.

 

Young rock star birthday card
Rock Star Birthday Card by me

I finished the drawing for Avalon's birthday. Avalon is a talented singer, and she's currently one of the lead singers with her local School of Rock House Band. She's only 12 but has presence beyond her years. She's a pretty good kid, I like her a lot 😉 Happy belated birthday sweet girl, Rock On 💕

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We were at the cottage for  Thanksgiving Weekend and I forgot my computer charger at home, so I did this little Happy Thanksgiving message with what I had one hand...pen and pencil crayons.  I hope all of my Canadian Friends and Family have a great Thanksgiving Monday!

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What I Wore Wednesday September the 30th, 2015

I thought I'd join in on the "What I Wore Wednesday" challenge for some fashion and drawing practice. My Mom Wardrobe could use work, but my co-model is looking gorgeous as usual as she tries to steal my glasses (as usual.)

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Fall Fashion Sudoku Grid

Fall capsule wardrobe inspired by Free Notion's Sudoku Grid

This is what happens when you get an hour to yourself but then Fall Face First into the Rabbit Hole that is the internet.  You design a fall capsule wardrobe instead of work on your next...well first...comic strip.

But I digress...

In the spirit of my KonMari journey to clear the clutter from my home, I'm reevaluating my wardrobe.  I don't have much of a wardrobe to start with, but what I do have rarely goes together to form a complete outfit.  This Sudoku Grid from Becca DuVal from Free Notion was an amazing help to discover what I have and what I need to buy to create outfits from my current wardrobe.

Check out Ms. DuVal's post here for instructions on how to create a Fall capsule wardrobe for yourself using the Sudoku fashion grid.

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He started the day nervous, but when we all got to the school he walked right in, thrilled to be in the same class as his best friend.  I was not weepy in the least, but excited for him.  I'm not sure what kind of a Mom that makes me...  But, his teacher is a mixture of sunshine and butterflies, and her classroom setup is great for play based learning.  It all seems just lovely.  I think this will be a great year 🙂

Yesterday is history, Tomorrow is a mystery, Today is a gift.  That's why it's called the Present.  Eleanor Roosevelt
Today is a gift. Art by me, quote by Eleanor Roosevelt

It was a rainy day on our last day at the cottage yesterday, so we showed William "Kung Fu Panda" for the first time.  He wasn't quite ready for it yet, and he ix-nayed it right around the time that the super villain broke out of jail.  But, we did get to the part where Oogway wisely recited this Eleanor Roosevelt quote to Po, which made me want to pull out this little "Quote Art" I did for my old blog.

More quotes by Mrs. Roosevelt (she was a smart lady)

“Great minds discuss ideas, average minds discuss events, small minds discuss people.”

“Do what you feel in your heart to be right – for you’ll be criticized anyway.”

“Do one thing everyday that scares you.”

“Learn from the mistakes of others. You can’t live long enough to make them all yourself. ”

“Once I had a rose named after me and I was very flattered. But I was not pleased to read the description in the catalogue: “No good in a bed, but fine up against a wall.”

“It isn’t enough to talk about peace. One must believe in it. And it isn’t enough to believe in it. One must work at it.”

Mixed media illustration of woman looking out on a photo of a beach
Looking out 

How I will miss this view, but Oh The joy of a stable internet connection!  Hello World!

 

 

My Grandma passed away this weekend.  It wasn't unexpected, and after a long battle with dementia, I was happy to see her at peace.  She leaves me with many wonderful memories, but this one kept coming to mind lately.  

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