Extra-Ordinary is changing its name to The Odd Sock Diary (and other stories), to reflect that it is the personal blog, or diary, of a mum whose child has Down’s Syndrome (and who occasionally gets a bit of writing done). Here’s how the new ‘About’ page reads:
My existence is one that many people would reject as too dismal to contemplate – simply because it involves being the full-time stay-at-home mum of a child who has Down’s Syndrome: but I’m defiantly happy with my “terrible” life (yes, I do mean defiantly).
Because it isn’t terrible at all.
I didn’t expect to become a mum again at the age of forty. When the doctor told me that my new baby had Down’s Syndrome I DID expect developmental delay and learning disability: I DID NOT expect a lively and inquisitive little boy with a well-developed sense of humour.
But that is who we got – Freddie: full of beans, full of mischief, affectionate and bright. Yes, bright – if bright means having an inquiring mind and being keen to learn; developmental delay and learning disability notwithstanding.
Something else I did not expect, after having a child with Down’s, was that I would become a graduate at the age of forty-eight (Creative Writing, First Class, with Honours, and taking the prize for Outstanding Acheivement), or that I would launch into a career as a freelance writer, which allows me to work from home, and when it suits me, so that I am always available to care for Freddie. I’ve written for as long as I can remember: even before I knew how to hold a pencil and form letters I made up stories in my head. The difference is that now I have the credentials to prove I’m reasonably competant at it.
Life has changed for the better in many ways since Freddie was born, and I would definitely number myself among the 79% of parents who report feeling MORE positive for having raised a child with Down’s Syndrome. So, if it’s martyrdom and misery you’re looking for, you’ve come to the wrong blog.
In The Odd Sock Diary I share my everday experiences of being mum to Freddie, hoping to help dispel some of the misconceptions surrounding what a diagnosis of Down’s Syndrome means to family life. Because so far, life with an extra chromosome has been pretty … ‘normal’. I also share my writing life, too – which is almost certainly rather less normal.
The ‘odd sock’ of the title was inspired by a visual representation of the Karyotype for Down’s Syndrome – the chromosomes look like pairs of stripy socks – but on the 21st chromosome there are three socks to the pair.
I do not pretend to be offering learned information or wise advice. I am not an expert on Down’s, or anything else. I leave that to the professionals.
This is only one woman’s story. As such it will not, can not, reflect everyone’s experience.