Cri du Chat Awareness week 2018 (Day 5)

My girl!

It’s been quite a journey and transitioning to life after high school has brought a whole new set of challenges but through it all, we have raised an amazing young lady and everyday, I get hugs and kisses.

My young adult daughter still falls asleep in my arms and holds my hand when we walk together.  She doesn’t care if people are looking at us and she has taught me not to care.

She’s also teaching me about determination and continues to develop my patience.

But most of all, she is teaching me about finding joy in the little things an loving unconditionally.

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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

The things I know!

I am aware of so many things… 

I can tell you what time it is without having to look at a clock. 

I know how long it takes for Emily to….

Wake-up

Use the bathroom

Brush her teeth

Have breakfast with or without the tv on

I know her school schedule, her tutoring schedule, when she cheers, plays baseball, sails, rides (horses) or have appointments

Yes, I write it all on the calendar on the wall,  in a paper agenda and in a shared electronic calendar but I still know before any of those tell me

I am aware of ….

How much soap she uses in the shower or if she needs help rinsing her hair

I know how long it will take her to get dress after a shower as opposed to getting dress on a morning without a shower

I am aware of the food we have in the pantry and in the fridge so I know that we are ok to have breakfast and make lunches for school

I am aware of which pieces of clothing are clean and which are in the laundry basket. I always know if what she wants to wear is clean 

I am aware of how long it takes Emily to pick an outfit

I know when I need to pick her outfit and I know how to lay her clothes on her bed for her to get ready faster


I get a little nagging feeling when she needs help.  By the time she says “mom!?!?!” I’m already on my way 

It’s not even 8am and all of this has happened already

💜💖💜💖💜💖

While I make sure Emily stays on task, I am also getting ready for my day.

I know how she is feeling.  I know when she’s healthy or sick and I know when she’s trying to fake being sick. I know which part of her body hurts even when she can’t tell me

I am aware of the help she might need to clean-up and do her hair and make-up

I know to ask her if she wants to put on jewelry

I am aware of the weather

I know how to help Emily pick her shoes, jacket and scarf for the day

I know the music she wants to listen to on the way to school

I am aware when she wants to talk and when she wants to sing

I know some of her dreams and hopes

This week, she started grade 12!


I know everything she eats

I know the shows and movies she likes

I thought I knew all of her struggles but missed a big one recently, it nearly broke my heart to learn about it

I see every changes on the floor, ground, sidewalk, hallway, stairs. I know Emily might not see them or might think their is a step when there is none. So I am aware of our surroundings.  All the time!

I know her medical history

I am her biggest fan and strongest advocate

I am her mom and the day she was born I never dreamed that my life would be like this but today, I wouldn’t change anything!

I’m exhausted but I adore Emily, she is an amazing young lady

Now…

I know I need to find her that special person to teach her more about painting so she can improve her art

I know I need to help her make connections in the community

I know I need to focus on learning about adult programs, support workers and how Emily will continue to learn and grow after high school is over
I know I need to treat her like a young adult and teach her life skills

I know she needs to learn to be more independent 

I know this is where we are at but in my heart, she will always be my baby


If you haven’t had a chance, please go check Emily’s business page on Facebook:  Emily’s Hopes and Dreams