Monday, 21 March 2016

Comparison is the thief of joy

I remember meeting up with some university friends not long after Immy was diagnosed with cerebral palsy. We were walking outdoors in the sunshine pushing our babies, with some of the older children toddling alongside, all chatting cheerfully. I wasn't feeling particularly despondent, and I wasn't jealous of their less-complex experiences of parenthood. I remember saying that I honestly thought it would have been better if Immy had not been born, and being met with a dismissive laugh from one of them, a doctor as it happens, who suggested that perhaps I was depressed and things would seem better in time. She may have been right in her first observation and she was right in the latter.

Over the years since, several mums of newly-diagnosed children have used those same words in conversation with me. "I wish my child had never been born" probably seem like shocking and terrible words. But these mothers are not (and I was not) saying they do not want to care for, or do not deeply value, their child. It's not necessarily a cry for help, or a sign of depression. It's an assessment made, at that point in time, of the balance of expected joys and sorrows ahead. I never react with a laugh or a dismissive comment.

I'd never stopped to think about the extent to which I had valued myself in relation to other people. Competition isn't a bad thing, it drives us to learn, make progress and excel. It leads to amazing sporting and creative achievements that can enrich all of our lives. It can drive innovations that can be a huge benefit to society, it can improve efficiency and service in a business context. I have been competing with, and comparing myself to, other people my whole life - through school, musical contests and sports, to university and then into work. I was reasonably good at it, and quite happy in that context. I'm now watching, with mixed feelings, as my son starts out on that same track in his school where so much of what the children do is treated as a competition.

And if I'm not competing with other people I'm usually to be found competing with myself - I don't need to join a gym class to set myself a workout that leaves me wobbly-kneed and struggling to breathe. Early parenthood can be a competitive experience too, from the ease with which you conceive, or the natural type of birth you "achieve", or the ease with which you can breastfeed. And then follows the all-important milestones that someone else's baby might be reaching before your own, and so it continues.

So for me, when I started out with a newly-diagnosed beautiful daughter whom I loved so much it physically hurt, this competitive environment was pretty much all I knew. I knew right then that she would never win the competitions, and probably this meant that I would stop winning too. This was scary as I really didn't know any other sort of world. I didn't see how either of us could possibly be happy.

It was only over time that I realised there is another world out there with different types of people in it, who are motivated by caring and nurturing, who are not solely interested in having bigger and better possessions and positions than others. Not everyone is obsessed with paying less tax, amassing more wealth or being promoted. There are loads of people who derive huge pleasure from helping others to achieve, and are happy to stand back and let them take the credit. There are many people that simply want to make beautiful things or play beautiful music for people to enjoy, or who want to spend their lives exploring the world or getting out into nature.

And there are armies of "special needs parents" not at the school gate probably, but who you meet and talk to online and at special groups. We are usually trying to offer each other support and a "shoulders down" place to relax and be brutally honest. We listen and share problems, ideas and solutions, and motivate each other to fight the daily battles for the things our children need. We think of the other children almost as our very own, and cry tears of joy when someone else's child makes a breakthrough or gets through a surgery and comes out safely or stronger.

I have, in my hall by the door, a framed copy of some beautiful calligraphy by a friend of mine whose daughter also has cerebral palsy. It is a quotation attributed to Theodore Roosevelt: "Comparison is the thief of joy". It is in the hallway as a check for me. The problem with competition is that any joy in success is short-lived, as the next contest is not far behind - will I be able to maintain my lead?

*available from WindramDesign on Etsy

It would no longer enter my head to wish my daughter did not exist. I see every single day the joy she brings to people around her. She may not win competitions but she wins hearts. She is happy now, most of the time, and I see no reason why that should ever change, as long as her health and funds allow her to get out and about and be her loving and caring self.

Friday, 18 March 2016

Clutching at straws

When I started this blog I felt optimistic about the title I chose. I felt energised and able to contribute in a small way to improving dignity and life chances not only for my daughter but also for other children with disabilities. After all, a huge amount has been achieved in recent decades by and for people who have an uphill struggle just to get on the starting blocks in the great competition of life. It's only a generation since disabled children were routinely taken from their families and kept in residential institutions, and on another, but related, subject it's not long since we were fighting one another in Europe. We kid ourselves if we think we can never go back to those days.

It really all comes down to the language we use to describe people. When we use words like vulnerable and disabled we are minded to be caring, perhaps because deep down we know that this might one day be us or somebody we love. When words like claimant, welfare spend, scrounger, fraud are used a lot we feel resentful and can distance ourselves, thinking only of the impact on the taxes we pay as a result of this supposed waste of our hard-earned money. On a more severe scale, attrocities such as the holocaust and apartheid (we've looked at the history of these in Lent talks at our church) were supported by large numbers of otherwise caring people because they were able to think of other groups as wicked and dangerous.

Right now the word equality feels like it's gone out of fashion. It's feels a bit passé and slightly embarrassing to be banging on this old drum. We've done with that now and moved on, haven't we?

This week I've been out and about as usual with friends, colleagues and other parents and have done my best to hide the cracks in my smiling mask. I feel like I should re-label my blog "clutching at straws" because there seems to be no cause for optimism in the public discourse.

And yet, the sun is starting to shine, the flower buds are forming, nests are being built once again, and Easter with its profound message of new life and hope in the face of apparent failure is almost upon us. I must look away from public rhetoric and look instead for the beauty in each day, I must steer my thoughts to the abundant generosity and kindness of family, friends, staff and volunteers that support us week by week.

And it is up to me to carry on working to make sure our beautiful girl is as physically strong, emotionally intelligent, academically able and self-confident as she can possibly be to tackle the challenges and set-backs that life will throw at her. I want her to realise her ambitions to offer care and support to others. Indeed I want exactly the same things for my son, who has been lucky enough to be given a head start right now, but who knows what tomorrow will bring?  And actually I want the same for all of the other beautiful and disabled children and young adults, full of potential and patience, that I have the privilege to know.

So please bear with me for the moment until I get the energy and motivation back to continue with the fight.