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charlottetwenty09 | our lives with rett syndrome GRRR

our lives with rett syndrome GRRR

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On reading Keeping Katherine by Susan Zimmermann – charlottetwenty09

https://charlottetwenty09.wordpress.com/2014/07/15/on-reading-keeping-katherine-by-susan-zimmermann

Our lives with rett syndrome GRRR. On reading Keeping Katherine by Susan Zimmermann. It will be almost 2 years in a few weeks, since I received the call from my paediatrician , of a positive result for Rett Syndrome for our Charlotte. I didn’t think I would still be feeling so devastated about it all, 2years later. Isn’t 2 years long enough? She is a strong spirit like her sister, her Da and Mama. We are strong individually but together we are stronger. 8220;Sometimes we are deserted by those we’ve...

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Big Sister’s Snow Candy World – charlottetwenty09

https://charlottetwenty09.wordpress.com/2015/02/22/big-sisters-snow-candy-world

Our lives with rett syndrome GRRR. Big Sister’s Snow Candy World. Where honey is water and you bring it to school. With your slushies as water too. And everyone would learn iceskating everyday at school. And there were no vegetables as your vegetables were mint leaves. And there were candy sticks for door knockers. Slushies would be the bath water. And milk would be your shower. White chocolate would be soap. Pillows and sheets would be marshmallows. A wish would come true when you wanted it too. Address...

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you + me – charlottetwenty09

https://charlottetwenty09.wordpress.com/2015/03/09/you-me

Our lives with rett syndrome GRRR. Life, Love and Lyricality. We are more alike, my friends, than we are unalike. Maya Angelou. Yesterday was Rare Disease Day. I watched on social media as friends and family shared pictures and facts. I watched [and joined in] as the various organisations representing Rett syndrome [and many many other rare diseases] shared information. I was humbled by the similarities, by the kinship we share. You and me were always with each other. You and me we belong together. You k...

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Busy Gaps – charlottetwenty09

https://charlottetwenty09.wordpress.com/2015/01/21/busy-gaps

Our lives with rett syndrome GRRR. We means a group of local CE families for school and Rett families we have befriended for research.That was 2014. Because sometimes there are no words , just some of my fave spots and moments for 2014-. I have to add I only really covered a few months of faves. There are too many! What I do like is they show what we are trying to do , which is to include Charlotte, despite Rett Syndrome into our lives and for Charlotte to include us in her life. January 21, 2015. Baby E...

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a voice – charlottetwenty09

https://charlottetwenty09.wordpress.com/2012/09/12/a-voice

Our lives with rett syndrome GRRR. Im starting this blog to process this journey I have started and we have started and Charlotte has started, since our youngest daughter’s Severe Global Developmental Delay (named in May 2011) became more specifically Rett Syndrome at 1230 on Monday 6th August. We are, Mama Caroline and Da Mark to Charlotte, 3 in November and oldest daughter Georgia, 6 in May this year. September 12, 2012. September 12, 2012. 3 thoughts on “a voice”. Pingback: a voice charlottetwenty09.

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The real issue | Hop, Skip, and a Jump

https://jjzapf.wordpress.com/2014/01/07/the-real-issue

Hop, Skip, and a Jump. Where I attempt to put together coherent thoughts on disability, culture, smashing the patriarchy, environmental stewardship, beatitude-Christianity, community, and whatever else comes to mind. January 7, 2014. Often, the biggest barrier to progress children with disabilities face is not their disability. It is not their increased or decreased muscle tone. It is not their reduced ability to communicate. It is not their learning difficulties. Unfortunately, they also have a tendency...

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Life in the Little Smoke: 09-Dec-2012

https://lifeinthelittlesmoke.blogspot.com/2012_12_09_archive.html

Life in the Little Smoke. Life with Lavendar in Little 'ol London. Life with Lavendar in London town. View my complete profile. Sunday, 9 December 2012. Why is Retts so hidden? Her mum Caroline started to write a blog about Charlotte's journey. Here you can find out more about the day-to-day life of Charlotte in her mother's words. Http:/ charlottetwenty09.wordpress.com/. Posted by Lavendar Lee. Links to this post. Subscribe to: Posts (Atom). Crockatt and Powell Booksellers. London Review of Books.

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charlottetwenty09 | our lives with rett syndrome GRRR

Day to Day RS. Moustache d for a friend’s 40th. April 5, 2015. Who says girls can’t wear a moustache? We had a lot of fun wearing these last night at a friend’s 40th. A shout out to my brother John who found these all in one pack to wear at the last minute to her Wig and Moustache event. I’m so proud of us as a family heading out to a family party at 5pm and arriving home at 9pm! Charlotte loved the laser disco lights and hearing people singing at a home karoake set. Day to Day RS. March 9, 2015. Yesterd...

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