THE PURSUIT OF SPONTANEITY PERSONAL ESSAY words by Alison Standley and photography by Rebecca Lindon
After baby number four you would think I had this down to a fine art. They are individually so different but get on beautifully most of the time. Just going with the flow is a part of my parenting method although I would be lying if that wasn’t firmly held in place by a fairly strict every-day routine. When the eldest was four weeks old a neighbor popped in to see how it was going (I don’t think terraced houses keep the noise in!) it wasn’t going very well. Another friend shared her copy of The Contented Little Baby book and the system just worked for me. My mother had already died and couldn’t help me so, although I now understand the controversial side to the book, it gave me a solid ground to start from and all four boys have fed, slept, and woken up to the timings. In a strange way I find this is much easier to flex out of when holidays and beautiful days drag us into adventures.
No one ever wants to hear that their child has any type of condition. It is not what you dream of for your parenting role and it is not a world you are familiar with, but it is the path we were given. It is not an uncommon condition (around 25000 people in the UK) but his type is rare and he is affected more than most children and is getting weaker all the time. It is a degenerative condition but each person is an individual and planning for how he will progress is taken one day at a time. As there is no crystal ball, we keep a healthy lifestyle, push him as much as possible and strive to live an inclusive life all doing activities and visiting new places together. By the time he was three he was already wearing leg splints (AFO’s) to help him walk. But already as a family we had to accept that certain normal activities like walking and cycling were not going to be possible for him and therefore us. He could walk much better wearing the supportive splints but not for very long and certainly not carrying much. So a beach trip has always involved carrying Frankie or taking the pushchair, or later his wheelchair.
There is a nine year gap between the eldest two and the youngest but this is not a problem and they all get along; the eldest were older enough to feel no jealousy. In fact they were not particularly interested in the babies but now they play with them, they enjoy a little window back into their own younger days. It is great to see a fourteen Now he is a full time chair user and this has year old come off a screen to leap around on a obvious limits to an outdoor lifestyle; it does not trampoline with his brothers, all of them. mean that anything is impossible it just adds that relentless layer of preparation and takes some of By the time Frankie reached two we knew he the spontaneity away. As long as he is warm and wasn’t walking with the same method as other the ground is hard we generally get everywhere. children his age. He was reluctant to walk very This is where the differences of ‘them and us’ start. far and we used the pushchair a lot. This was the A walk in the woods for us means considering start of hospital appointments, puzzled doctors, which chair to take - has it rained and will the and MRI scans and eventual diagnosis of Charcot ground be boggy (useless for chairs) will it rain, Marie Tooth. will he get cold, are there any steps? 5
