I am finally working on a new comic. Happy Spring Everyone!
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M-CM Network - Some of the other online info about the syndrome is out of date and/or innacurate.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!
Hand lettering! I've always admired hand lettering, but I thought it was difficult to do. Over the weekend, I fell into the rabbit hole of modern calligraphy tutorials on YouTube and it wasn't long before I was hooked. Clara's name above is written in 'fake calligraphy', and I've tried brush calligraphy with my watercolours as well. It's not as hard as it looks, and if you are decent at handwriting, you'll be able to accomplish a similar look, I promise!
This is why it doesn't matter if we wear pajamas to drop off or pick up our kids from school here in Canada.
I'm a big fan of process art, which basically means giving my kids the supplies and letting them do their thing with no intended outcome. Although most of the resulting artwork is far from Pinterest Perfect, process art is a godsend for the lazy mother and very beneficial for the developing artist.
But, for Valentine's day, we do have an intended outcome: 30 valentines to hand out at the class Valentine's Day party on Friday. Well, my JK'er really wasn't feeling in the spirit this year. Something about writing his name 30 times instead of playing with lego was not floating his boat. In the end, I cut some hearts out of construction paper and let him have at them with the stapler. The stapler *really* floated his boat. He was the 'Staple Guy' and I was the 'Cutting guy', and together we made 30 construction paper heart parcels, each containing a couple of foil wrapped chocolates.
And they are perfect 🙂
I'm setting up a little facebook group for my street, so I drew this line of houses for the group cover photo. I actually spent a silly amount of time searching for a free stock photo of houses before I came to my senses and decided to sketch my own! This truly is a quick sketch, it only took me twenty minutes.
Do you belong to a community group for your neighborhood?
Today is National Dress Like Mommy Day! (A holiday I made up so I could post this quick sketch.) I'm drawing again after a brief hiatus since this girl had surgery then caught pneumonia. She's better now and back to stealing my undergarments for her own use (Lord help me when she becomes a teenager!) Have a great day!