Life with Kitty: Disabled children can teach us allBy Jane Holmes
May 17, 2011
My name is Jane Holmes and I live in Ruscombe. I've worked in Wokingham for several years, starting up two charities locally, each supporting families with disabled children.
I have a daughter, Kitty who is 9.
Kitty has severe cerebral palsy which she was born with.
The last nine years have been completely life-changing, but have given me an insight that I never in my wildest dreams knew existed. My journey with Kitty is something I am deeply grateful for and would not change. In this new blog on getwokingham, I will tell you about some of my experiences.
Having her as my child has given me a strength of purpose that I believe I would not have found without her.
She has inspired me to dedicate my life to making the world a better place for her and for other children like her. However, it is not easy and the constant battling we have to do as parents is exhausting. People come and go and the bigger Kitty becomes, the harder it is to physically care for her and the fewer people there are who are able to help.
Currently there is no community centre for disabled children and their families in Wokingham Borough.
Our charity Building For The Future has been raising money for a centre for four years and we are now in a position to take on a long-term lease on a property and to pay commercial rates for it. Please let us know if you have anywhere in mind.
A place like this could make a huge difference to a lot of local children and their families.
I plan to use this blog to keep you updated on our campaign to provide this facility.
Life with Kitty
I'm sure I'm deeply biased, but my little girl is great, she really is. She is so disabled that she cannot eat, use her hands properly, stand unaided, talk or walk, but she is one of life's great gifts. A real live-wire, she is inquisitive, clever, very opinionated and grabs hold of life with both hands, with a huge smile and a spine of determined steel.
She doesn't actually have a spine of steel yet, though plenty of disabled children do, nor is she in fact able to grab anything with both hands, but you get the picture.
Disabled children have something very important to teach the world. They start with those closest to them and then it spreads … they teach those who care to look what life is all about. I am as sensitive to triteness as the next person, but I say this without a trace of irony.
All the perceived ideals of life such as money, power, possessions and appearance are gunned down completely by disabled children. Such values suddenly seem completely ridiculous and off-course.
Disabled children do not have and in most cases never will have any of these things, but something much more important shines from them. They have wisdom, strength, dignity, hope and an often quiet, often elated certainty of their own worth. How many of us can say the same?
People regularly tell me how amazing they think I am. Usually because I run a couple of charities, alongside raising a disabled child. They comment on how hard it must be, what a strain it must put on relationships and ask me with wonder in their voices how on earth I cope.
Lovely as it is to receive such effusive praise, people have not quite got it right. Amazing as I am quite sure every parent of a disabled child is, it is not the children themselves who put the strain on us. In my opinion, it is the children who actually save us. It is everything that goes with them that is so hard.
Ask a parent of a disabled child to sum up, in one word, what life is really like and I'd say the word 'fight' would come fairly high up the list.
Chasing up those providers whose job it is to supply us with what our children really need, when they need it; having to issue threats in order to access the care our children cannot manage without; spending hours and employing Machiavellian strategies to ensure their educational needs are met are all in a week's work for many of us.
Thank God we do have the children themselves to make it all worthwhile. To hold close at the end of each day and to remind us of what is really important so that we don't crack up.
Ironically, without them, we really wouldn't cope with the pressures that having them brings.