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Showing posts from August, 2013

Bittersweet

My favourite encounters in life are definitely the extreme ones. I’m a bit of an all-or-nothing girl. As a result I’m impatient, feisty, outspoken and pretty intolerant of apathy in all its various forms. I put my hands up to making some impractical life choices because I live in the here and now, although my long suffering (and very different) husband balances me out and somewhat earths my incessant electric need for new experiences.  That said, having a limited edition kiddo was never on my bucket list of new experiences, if truth be told. And yet the range and intensity of emotion that is laid at my door daily through this beautiful boy is beyond even my all-or-nothingness. It’s bizarre, upside down and back to front-sometimes it feels as if the milestones we celebrate with all our heart are the very same things that cause the most pain. We recently met with the incredible Team B to chat through his progress over the past year, celebrate his achievements and s

The Choice We Never Made

Today I had the privilege of sitting in a room with 40 of the most incredible, inspirational women on the earth. These women have been assigned the toughest job on the planet and every single one of them has selflessly stepped up to the plate; given everything to a cause which they never imagined they’d be fighting for, alongside dealing with their complete lack of choice in the matter. I’m talking about the amazing ladies I met at the bi-annual Dup15q syndrome conference, people who had their lives turned upside down the day they birthed their beautiful babies into this world. Incredibly fragile, rare little people with a hugely uncommon chromosomal disorder-duplication 15q syndrome. For those of you not hot on genetics, this is a condition whereby the affected individual carries too many copies of a critical chunk on chromosome 15. This tiny internal difference causes a monumental external difference- kids are almost always autistic, have big difficulties in commun