The Pursuit of Spontaneity

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.

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 year old come off a screen to leap around on a trampoline with his brothers, all of them.

By the time Frankie reached two we knew he wasn’t walking with the same method as other children his age. He was reluctant to walk very far and we used the pushchair a lot. This was the start of hospital appointments, puzzled doctors, and MRI scans and eventual diagnosis of Charcot Marie Tooth.

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.

Now he is a full time chair user and this has obvious limits to an outdoor lifestyle; it does not mean that anything is impossible it just adds that relentless layer of preparation and takes some of the spontaneity away. As long as he is warm and the ground is hard we generally get everywhere. This is where the differences of ‘them and us’ start. A walk in the woods for us means considering which chair to take - has it rained and will the ground be boggy (useless for chairs) will it rain, will he get cold, are there any steps?

The thought process goes on. As much as we are used to this it becomes more important as he gets older; to lift a four year old is normal and do-able but to lift a thirteen year old up unexpected steps and then his chair, makes a walk less fun but if we always stuck to the path he would miss so many beautiful moments and we would miss them as a family. Yes I have lowered his chair (and him) down banks, pushed through thick mud with only a glimmer of ‘how will we get back?” but we always do and he has seen the places which might have defeated us without a driving attitude and his desire to see what is round the corner.

We just came back from London and experienced one of the many ‘I’ll only be a minute” moments as a non-disabled person looks my son in the eye and dashes into the accessible toilet before we can. Without wanting to overuse the word relentless you have to start to absorb society and its “me first” attitude. The lady yesterday saw that we would take some time and she was more important, how do you explain this to a thirteen year old? But he sees it all - the cars taking disabled spaces, the damaged and dirty accessible toilets, the lift full of able-bodied people too lazy to use the escalator and he hears the conversations I have with healthcare officials/ teachers/cafe owners while we try and be the same as everyone else. While I totally understand some places like old buildings not being easy for wheel chairs it is only when faced with a flight of stairs that you know he cannot use that the frustration starts to build. Again this starts to feel relentless. It took three weeks to get his taxi driver to carry his school bag, four years to achieve an extension so he could independently access his home, three years to sort school toilets, two years to raise the funds for a powered wheel chair so he could be independent at high school (only to realise this chair will not get him far outdoors so more fundraising), the list is relentless. When a situation flows and is easy the difference it makes to us all is huge, we are a large family but we like to go and experience places together and being spontaneous is not always possible.

The very nature of Frankie’s deterioration means that he needs more help than the average thirteen year old. I have four children and a husband who also deserve my attention and then usually last on the list is me. It is a challenge to give F enough help without (unwillingly) making him dependent.

I force him to sometimes find a solution to a problem even if this involves crawling or using his teeth; my hope is for him to be independent as much as is practical, even if this pushes him out of his comfort zone and is awkward to watch. But how else can we create a world where he doesn’t simply look for help before trying to help himself. Lots of this is not what I expected when having children, that is part of the deal with a child with any additional needs. Emotionally it is a mountain to climb to accept and not dwell on the ‘what if’s’ as that will not change anything. We have a different normal to other families and some are much worse off than us. My other children know no different and that has hopefully created at least three other future adults who can view disability from the inside with compassion and see a person or friend instead of any limitations. But when I am faced with spreading myself thinly as I need to support Frankie that often includes taking the younger two along and it can be stressful. We don’t have much support with childcare so we just get on with it. The other three have attended many hospital appointments, the little two since birth and they think going to London (Great Ormand Street) is great - I try and link in one other, better thing, to do be it a park or museum or just chasing the pigeons.

Looking forward I want to enable Frankie to achieve his goals of future higher study and employment in a job he loves. But I wish this for all my children equally and that is always the challenge - to be the form filler, the appointment rememberer, the cheerleader and any other parental push that will get them there.

Do not take for granted the idea of independence.

Words by Alison Standley and Photography by Rebecca Lindon