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

Ellie’s journey 

Do you remember that little baby girl I fell in love with recently? Ellie has Cri du Chat Syndrome, just like Emily and lives just a couple of hours away.

Her mom started blogging today! Yeah!

Please take a minute and go visit her blog!

Emmett and Ellie's world's avatarEllie and emmetts world

Ellie Jane was born at 10:20 pm on January 20th 2016 weighing 7’9 and 21 inches long .

So let me start from the beginning, I was a nervous wreck when I found out I was pregnant as I just had a miscarriage 4 months before, but I was happy to be having my rainbow baby. I had a healthy pregnancy, I was sick all the time but hey that’s normal 😉 all of my bloodwork and tests that they do during pregnancy came back clear as a whistle. When I hit the 18th week we found out we were having a girl! We were ecstatic since we already have a gorgeous little boy Emmett!

January 20th I went into labour, it was quick and didn’t have anytime for a epidural ! I instantly knew there was something wrong, Ellie wasn’t crying , they called another nurse and started working…

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