What are you reading and why?

I am changing things around a little…

What are you reading and why?

I am spending lots of quality time with travel books

We are planning to visit Alberta and British Columbia this summer and I am in planning mode.Β  Booked the flights and most of our hotels rooms, I have our National Park Discovery Pass and I am waiting on our doctor to sign for Emily’s Access pass.Β  This is all really exciting.

I am also reading this book: Gut

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Raising a child with Cri du Chat syndrome, I have spent many hours learning about physiotherapy, occupational therapy, speech therapy, learning styles and many other organ functions, what they do, how they work and how to help it all work better.

I am 17 years into this journey and here I am reading about the gut!

So tell me, what are you reading and why?

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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