My baby girl’s syndrome

Today marked the 16th anniversary of Emily’s diagnosis…

Cri du chat syndrome… Or CDC syndrome… Or 5P-

16 years ago, our life changed

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This 15 months old little girl has changed us. 

I write about Emily’s success, I tell you about all the wonderful things she does and I show you pictures that showcase my girl in the best light possible. 

I told you about the day the genetic counsellors told us that she would never walk, talk, recognize us, show emotions, learn to eat…

I told you how she can do all of those things. 

I don’t tell you about some of her challenges because she asked me not to. 

The fact that she can ask me not to tell you some of her more private struggles is a success. 

She understands that some things are private. 

I do my best to take you into our world but I don’t believe my writing will ever do Emily justice.

I don’t dwell on the things that I couldn’t and sometimes still can’t control. 

The hair and nail pulling, my back pain, sleepless nights, completely scary amount of vomitting, surgeries, hospital stays, getting slapped, pushed, kicked or hit, biting, teeth grinding, my concussion, my TMJ, school meetings, tutoring, various therapies, sign language classes, PECS system, psychologist assessment, doctors appointments, vacation days spent at the hospital, schedule juggling and financially broke…. Just to name a few…

This journey we’ve been on is not an easy one. 

On many occasions, it sucked!

The thing is, I can’t live a life where those moments define me and my outlook on life. 

I chose to be happy!

I chose to be inspired by Emily!

I chose the smiles, laugh, cuddles…

I chose to see that Emily can help with small tasks around the house, I chose to see that she is happy in school and continues to learn. 

I chose to sing my head off with her in the car and watch whatever it is she wants to watch on tv. 

I love that she understands two languages and understands empathy and other complex emotions. 

I love how stubborn she is!  Her determination is admirable. 

I love how patient she is!  She will continue to explain herself until she’s understood..

I love how girly she is. 

I love how fearless she is.  One day I will show you videos of her signing on stage at a coffee shop or taking over a dance number πŸ™‚

I love watching her cheer, play baseball, ride horses, sail, shop,drink tea, bowl, …

I love how much she loves me!!!

To see myself through her eyes makes my life and all the challenges we’ve been through worth it. 

To be Emily’s mom is the hardest most amazing thing I have ever done. 

My girl has cri du chat syndrome but it doesn’t define her!

She defines it and she is awesome!

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Autumn Bucket list – Week 1 update

Exactly a week ago, I sat down and wrote my first ever bucket list.

To celebrate my favorite season and my 40th year, I wrote down a lit of 40 items I want to do before end of day on December 21st.

You can find my post here: Autumn Bucket list

The last 2 items on my list are:

39. Document my bucket list with pictures

40. Blog about my progress weekly

So this is my first update…  what could we have possibly done in 1 week!

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#35 – Drink a pumpkin spice latte – this was my first PSL and it will be my last.  I couldn’t finish it… this is not my thing, I will keep drinking lattes…

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#32 – Perform a random act of kindness – when I bought this Pumpkin Spice latte, I bought my colleagues their favorites too…  Just because 

 
#21 – Make binders for Emily’s cheer coaches – I believe I have mentioned before that Emily has joined a cheer club, they have a team for athletes of various abilities and I wanted to give our amazing coaches some tools to help them understands and work with their growing team.

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#9. Buy our favorite Halloween candies and keep them for us…  I believe I will have to buy more as the box is already open!

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#5. Go to the drive-in one last time.  Emily was so excited to see Hotel Transylvania 2.  And the good thing this time of year?  Movie started at 8:30pm instead of 10pm

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#2. Visit a pumpkin patch and pick 3 pumpkins.  This was interesting!  It was family outing / physiotherapy appointment…  Emily’s mobility is much better than anything the doctors thought she would achieve but a pumpkin patch…  I never thought about how the ground would be uneven and covered in vines…  We managed, I helped Emily and we found our way around a huge field of pumpkins to find our perfect “future minions”

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#7. Hop on a hay ride – There was no hay on the ride but a wagon pulled by a tractor has to qualify!

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So, here it is, week 1.

I’ve also picked my future hair color, saw the blood moon and tried to photographed it, Emily is almost ready for Halloween, we bought the paint to tackle our pumpkin art project and bought supplies for treat bags & cupcakes…

I am so ready to continue tackling this list!

What about you?  Do you have a bucket list?