Education | Lessons from my daughter

February 29th is Rare Disease Day

In my own way, through writing about our experiences raising Emily, I continue to spread the word about Cri du Chat Syndrome (CdCs)

I do my best to share experiences that are positive, fun and inspiring. I don’t shy away from writing about struggles but I will always respect Emily’s need for privacy on some more personal topics.

Did you know…

Only 1 in approximately 50,000 born will miss that tiny part of their 5th chromosome…. chances of knowing or meeting another child with CdCs are really small.

Emily was diagnosed before facebook, the information available was outdated and scary. It took us 15 years before we met others with Cri du Chat Syndrome.

Now with facebook, association and blogs, our reach is far greater and parents find up-to-date information much faster.

That being said, it is essential to increase awareness to promote acceptance for any child with special needs.

I would love for Emily’s blog “Lessons from my Daughter” to reach as many people as possible…

Would you help me by sharing this post? Please help Emily and I raise awereness for Cri du Chat Syndrome!

Thank you for being part of our journey!

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

I am on Pinterest too… one day I will figure out what to do there other than finding cool recipes but meanwhile, you can find me here: Lessons from my Daughter

Just like the Lego song….

I don’t write enough, I know but tonight I am compelled to tell you things…

I want to tell you about milestones!

How in the last year, Emily has learned:

1. to feed the dogs…. Not too much or too little… Just enough food and water. No messy puddles around their bowls, just perfect.

2. to help empty the dishwasher.

3. to move the laundry from the washer to the dryer.

4. to make her bed and keep her room clean.

5. to fold socks, undies and face cloths.

6. to put her clothes away, all but the ones on hangers.

7. To cheer

8. to sail
9. to set the water temperature when she takes her shower.

And many more little things…

Many…

This is part of why everything is awesome.

What else?

This morning, I reminded Emily that we have box seat tickets to see the Sound of Music over the weekend. I wanted her to decide who we should invite.

For the first time ever, she picked a friend.

A friend!!! This is huge, Emily struggles with social interactions, she tries but it’s not easy and today she asked me to invite a specific friend.

I did and they said yes so this will be a mothers and daughters outing.

I’m so happy about this!

On top of that…. On Monday this week, Emily started her coop program at school. 5 mornings a week, she will work at one of our local Superstore learning new skills.

Yesterday was a snow day.

Today was her second day and I turned into that mom… The one who shows-up at her kid’s work and take a picture!

Look at her, all grown-up!
She wanted to hug me when I showed-up but I reminded Emily that she was at work and had to act professional. So she did and that made me so proud.

So far, she loves it!

Wait…. There’s one more thing!

Earlier this month, I received a friend request from a mom of a little boy who has Cri du chat syndrome. I have known about her and her family for some time now due to a common friend. I didn’t reach out to her, I gave her space and made myself available. She sent me a note on Feb 4th saying “your words gave me light in a time of darkness and fears”. She’s been reading my blog!

I’m humbled!

So… 2 weeks later, I received a private Facebook message from another mom. Her baby girl is 10 months old and has Cri du chat syndrome too. In a nutshell, she thanked me for my blog. For giving her a positive story and inspiring her to learn about Cri du chat. Something about how I look at the bright side of life. I had tears in my eyes when I read her message and more tears when I read it out loud to my husband.

Those moms are why I write!

So tonight, I’m grateful for life.

Everything is awesome!

If you want short updates and timely pictures of the little things that are happening in our life, please like Lessons From My Daughter page on Facebook!