07Nov07 - Adaption

Adapting your home is the last thing you think about when you find out your baby is going to have disabilities and when the time comes round it is difficult to accept. In a way we are fortunate that Lucy's therapists were very switched on to her future needs and how the adaption grant system works because although it is a lengthy process, it is happening a lot sooner than perhaps it otherwise would without their help. The whole process has been very efficient and almost clinical. Although it is all for Lucy's benefit and we will not have to contribute towards the cost, I have always felt very negative about it. It is horrible walking around your home with strangers, being told how it will have to change and all the equipment that will have to be installed. The adaption process reinforces and highlights how different your life is going to be and how your choices are gradually taken away. You have to listen to comments like "when Lucy is older she will need this", "when she is bigger she will need that", "it is going to get more difficult to change her so you need this". I guess comments like this are realistic and need to be said but I can only liken it to a mechanic sucking wind and telling you what a difficult job your car is going to be. The whole focus is purely on the disabled family member forgetting that the rest of the family will all be affected. It is not the inconvenience or the damage to your home that hurts, it is the impending life change that you are forced to confront, the same life change that you have being trying to deny for as long as possible. I have found each visit and meeting an emotional tormoil even when I was not there and feel angry and bitter that we have to do this at all. I know in the future we will probably be glad of the adaption but I never expected it to happen so soon. To me Lucy is still a baby and I want that feeling to last as long as possible because in the back of my mind I know that as she gets older and bigger everything we do with her will be that much more difficult. Adaption suddenly fast fowards your thinking and makes you look into the future. Conversations about future needs and problems are conducted in a matter of fact way and you join in not realising until later how sad it makes you feel. I certainly wasn't prepared for all of this and the feelings that it brought. Getting the go ahead and the grant approval was the least of my concerns.

We had someone at the house today taking measurements and deciding where and how to position all the equipment. It is very different from redecorating or rearranging your lounge furniture. We are turning Joshua's sanctuary, a perfectly good playroom full of toys and computer games into the "Lucy Ward".She will have a wet area with shower table and basin, hoist with tracking on the ceiling and a special bed. We will have to find lots of pink fuzzy stuff to make it feel more like a bedroom and convince Joshua to part with half of his old toys. Everything is approved now and it is just a matter of time before they start work whether we like it or not. I know that it has to happen no matter where we live but I can't imagine how difficult it will be now if we ever want to move house!