Cri du Chat Awareness week 2018 (Day 6)

Celebrating my daughter the artist!

I remember very clearly the day Emily was diagnosed.

The grim diagnosis, the speech we received. Your daughter will never walk, never talk, she will be in a wheelchair, fed by tube in her own world. She will not recognize you, she will not understand you and show emotions.

Let that sink in for a moment. I was 24 years old and the genetic counselors looked at me like my life was over.

This was 1999, the majority of the information available said the same thing, I also found some information saying that my daughter’s life expectancy was shorter due to various other possible health complications.

We were devastated but Emily was already 15 months old and I knew she knew us.

I held on to that knowledge with all I had and believed she had a potential. We were ready to do everything possible to give her, her best life.

I was ready for the worst case scenario but had a feeling it wouldn’t be quite like that.

So today, I am celebrating, Emily, the artist!

She was never afraid to get dirty!

She paints!

on canvas and on glass!she is also quite interested in pottery!

Not just the painting of pottery, she is making some cool items too!

My girl is an artist!

Emily has turned her passion for art into 2 incredible opportunities.

Once a week, she goes to a pottery studio in town where she cleans and organizes their equipment in exchange for studio time and the owners help in developing her skills.

She met the owners during her school coop last year and they were happy to expand on the relationship. Emily is dropped there by her support worker and I pick her up at the end of her shift.

Emily also volunteers at a local Boys and Girls club, once a week. She is responsible for a craft activity for kids around the age of 6. She now has 7 regular students. Emily’s support worker stays with her for this and helps her pick the craft and organize the activity.

I am very proud of her and we will continue to seek opportunities like this for her!

When she paints or does pottery, her focus is phenomenal!

Her fine motor skills continue to improve as she continues to work on them…

And she’s still not worried about getting dirty!

This is only a fragment of Emily’s story and I’m so glad to be a part of it!

If you haven’t had a chance yet, please go see her Facebook page, if you like it, please hit that like button and share it with your contacts, friends and family.

Emily’s Hopes and Dreams

Find more about about Cri du Chat syndrome at 5p- Society

Emily has a her own page in the family stories , you can find it here: Emily

If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page on Facebook.

You can also find me on Twitter at @plebrass

Growing up

I know I don’t really write anymore but just wanted you all to know that Emily is now officially in a relationship!

I say officially because they made it Facebook official over the weekend!

Here she is with the lucky guy, having dinner after her cheer competition on Saturday!

No wonder she’s smitten, he bought her flowers!

Other updates include Emily’s love of pottery which started as a school coop placement a year ago to a weekly volunteering opportunity which allows her to continue to grow as an artist.

She has a uniform!

We are also exploring other volunteering opportunities at one of the local Boys and Girls Club, doing art project with younger kids and at her cheer club, helping the coaches for one of the team of younger athletes.

She’s very excited about all of these opportunities.

Here are some of her more recent art projects!

Leaving you with this picture of Emily enjoying life by laughing with her whole body!

I am wishing you that kind of laugh at least once a week!


Remember, for short timely update, visit our Facebook page: Lessons from my daughter / How Emily defines Cri du Chat Syndrome