Was this in the Plan?: August 2019

A Family Reunion

"Find your tribe", it's the advice I give the many parents of children with additional needs who contact me. It doesn't matter if you child has a confirmed diagnosis, you need to find people who "get it", who understand what it's like to live 24/7 with a child who has taken you for a ride on the extreme parenting roller coaster.

We were lucky (I'm ever the optimist), Daisy received a confirmed diagnosis of Costello Syndrome when she was 6 months old. At the time she was one of the first children in the world to be tested for the sporadic mutation on the hras gene which causes the syndrome, at the time we were told that it was so sporadic the chances of having a child with Costello Syndrome were 1:1.25million.

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This is the story of my family, and how we are learning to thrive and not just survive when life didn't go quite as we planned.

I'm Steph, a suburban mother, sometime Marketing Director, now family plate spinner, journalist, carer, nurse, spokesperson, campaigner and marathon runner (actual as well as metaphorical).

I have four extraordinary children, my two boys have a diagnosis of high functioning autism yet they could not be more different, my eldest daughter is a creative social justice warrior, my youngest daughter was born with a very rare genetic condition.

In December 2015 I also became a widow, my husband, the father of my children & partner of 27 years, Andy, died of cancer, leaving us with a gaping hole in our lives. 13 months later our darling daughter Daisy died.

My life was never going to be predictable but as Andy always said, it is what it is, it's how you respond which makes the difference.

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A Family Reunion

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