It’s not always about milestones and successes

Lately, I have shared with you some older blog posts and some more recent success stories.

Most of the blog activities and facebook pages for kids with Cri du Chat syndrome are about the little ones.Β  Not many are about teenagers or young adults, I am an anomaly…

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This morning, we went shoes and clothes shopping and got lots of new items for Emily!

We went for a late breakfast after all the shopping!

When our plates arrived, I did what I always do.Β  I set my plate aside and started to fix-up hers.Β  I started by cutting all the fruits in bite-size pieces, moved the smoked salmon aside, cut her bagels in manageable pieces, added the salmon back on top, moved the red onions and capers to the side, cut the tomatoes…

My food was lukewarm by the time I was ready to eat.Β  I’ve been eating lukewarm to cold food for 17 years now… It taste good.Β  Actually, I can’t eat hot food or drink hot coffee anymore!

As we ate, Emily started talking about her upcoming blog and what she would like to talk about than reminded me that I promised to write about her love of the Paw Patrol tv show…

If you have little ones and still don’t know about the Paw PatrolΒ  You need to check it out as theyΒ  will soon invade your house!

If you have a sense of humor, you should read this post that appeared in my facebook feed earlier this week.Β  Click HERE!

Meanwhile, my 17 year old daughter loves those puppies and spent months asking us to go to all the stores in town to find an Everest to add to her collection.

We didn’t find Everest but eventually found this kit!


These figurines come with their pup packs and she got the silly chicken and cute cat too!

Emily was so happy to have them all now and obviously, if we were only missing Everest… you can assume that we have doubles…

Each dog has been matched with a princess, each match was made for a really specific reason.

Jon and I keep moving the princesses and dogs around just for fun.Β  It takes Emily seconds to realize that her toys have been moved πŸ™‚Β  She continues to fix them up.Β  It’s amazing how she notices instantly when we do that.

Those figurines aren’t the only Paw Patrol puppies we have in the house.

Emily has manyΒ Webkinz so she picked 7 and named them after the Paw Patrol.Β  Those resides on her headboard.

Emily also have the pretend Paw Patrol puppies living with us.

Emily has a big pretend world!

Our house is full of so many pretend friends!

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If you like to read about Emily and would like timely updates of little and big things happening in her life, you should follow Lessons from my daughter‘s page on Facebook.Β  This is where I post tidbits of information before I have time to write a proper blog post.Β  Some stories might never get a full blog post!Β  Join us there too!

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

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

 

Afternoon tea in Bermudas

When I was pregnant, I was hoping for a healthy little baby girl!

I had those images in my head and in my heart.  My daughter and I walking, chatting, going to the book store and sitting around a coffee shop with our books and magazines.  My baby would turn into a beautiful young lady, polite and respectful, she would love me the way I love my mom.  We would go shopping and we would travel the world together….  She would probably dance, be really good at school and grow-up to be an amazing woman…

After Emily was diagnosed, I had to fill some paperwork detailing her handicap / her disability.  I looked at the form, all she could do was see and hear…  She was severely affected physically, mentally and her gross & fine motor skills were non-existent…  I knew I had to sign the form and send it to the government but I sat there and looked at it for days…. I didn’t want to admit it to myself.

Emily didn’t die when she was diagnosed but my dreams did!  All of them were shattered!

Regularly I had to go back to those calls that changed my life and remind myself that I could do this, that all I had to do was look at my daughter for who she was not for who she could have been.  I had to adjust my dreams.

November 2012, my husband, daughter and I traveled to Bermudas!  While at the Fairmont Hamilton, I noticed they were offering afternoon tea… Emily likes tea, her Nana introduced her to tea.

I asked Emily if she wanted to come to afternoon tea with me.  Explained that it would be like pretend tea but for real….. we would pick our tea and tiny sandwiches, we would wear our pretty dresses and try to drink tea with our pinky up…  She agreed to try.

I reserved a table, we got all dolled up, said goodbye to daddy and we went for tea!

Most people looking at us saw a mother-daughter (and a doll) having tea.  I saw a dream, a dream I wasn’t even allowing myself to have anymore.  Emily picked a jasmine butterfly tea and I can’t remember what I picked.  We took both trays of sandwiches and every other little finger food they would bring us.

We tried everything, some things she liked while others she didn’t.  She had an opinion, on the tea and the food.  She had an opinion on the live music.  We had small chit-chat and she tried drinking with her pinky up…  We laughed!

I discretely wiped tears from my eyes….. I didn’t want Emily to see how happy I was, I didn’t want to confuse her.

Sometimes, our dreams are so big, so far away that we can’t imagine getting there….  I had given up on this dream of enjoying a beverage with Emily while talking…… When it happened, I was speechless.  I wanted to hug her and tell everybody around us how special this moment was but I didn’t.  It was our moment.

I do have that daughter from my earlier dreams, she is polite, she adores me, she is beautiful inside and out.  She is determine to learn and work hard on learning to read and understand math.

But the most important thing is that she is herself and has opinions…..

Do you allow your kids to be themselves and build their own opinions?  Do you allow them to be kids and to dream?

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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

I am on Pinterest… one day I will figure out what to do there other than finding cool recipes