I have been trying to decide whether to post blogs about my daughter on this site or start a new one. For a while I thought it best to separate my writing about Bessie from my writing on teaching because the content is going to be very different but, after a fair bit of reflection, I have decided to go ahead on this existing page. This is for the same reason that I don’t have two twitter accounts, one personal and one professional; I am one person and dividing things into compartments just doesn’t feel an accurate representation of how I see my life.
If you’re only interested in reading about education fair enough. Stop reading now.
So, deep breath. As some of you reading this already know, about three months ago Bessie was diagnosed with a rare genetic condition called Williams’ Syndrome (go ahead and google it. It was the first thing we did!), caused by a random microdeletion of a tiny part of her DNA. Williams Syndrome, without getting into it all blow by blow, means that along with some gifts, she is also likely to find lots of things harder than those without her condition.
Coming to terms with the diagnosis has, after an initial truly awful period when the shock and uncertainty made life very tough, been surprisingly easy so far.
Bessie is the same girl she always was and was never anything else. She has, thank God so far, escaped some of the worst health implications of Williams Syndrome and as a family we feel ourselves blessed.
The mental shift has been interesting. I’ve assumed an identity I never expected to have; the father of a child with special needs. A whole world has opened up and what once seemed abstract and unrelatable has become personal and important because I now have a dog (sorry Bessie!) in the fight.
One of the first things I noticed is that a lot of coverage and reaction to people who are different is somewhat infantile in tone. I do understand why and don’t think this happens out of any bad intention; people who learn more slowly than others do come across as more childlike sometimes and the fact they need care can easily lead us to treat them like children even when they aren’t.
Bessie is, of course, still a child (a massively cute one. Probably the cutest in the world) and will be for a long time yet. But I don’t want everything about her to be reduced to ‘cute’, or ‘aw’, or ‘bless’. I was thinking about this a couple of weeks ago when my wife and I were watching videos of children with Williams’ Syndrome walking for the first time. On first view, these videos do indeed appear cute; the staggering first steps, the slightly awkward gait and the nervous looks around for reassurance.
But to me it isn’t cute. It is epic.
About a week ago my wonderful, determined and tough daughter crawled for the first time. The video we have of this will, I know, be one I watch forever. You see this isn’t easy for Bessie. It didn’t come as naturally as it does for most others. Her lower muscle tone means it was a fight just to sit up. A fight to roll over. A fight to reach, and grab. It has been frustrating for her. She’s screamed with anger, arched her back, her face screwed up in purple rage. She has wanted so very much to move for so long. For months she sat back on her haunches and rocked frantically, not yet physically ready to lift an arm without collapsing. She’s watched other children her age totter about with an expression which is heart-breaking to watch.
But she didn’t give up. She kept going and the first wobbly forward shuffles we have now captured on video forever are the result of months of determined effort. It is not cute. It is jaw-dropping. It is life affirming. And when she stops half way and screams it is a triumphant roar of primeval joy.
“I am Bessie! I’m on the move!”