Archive for August, 2012

The World has Stopped..

Tuesday, August 21st, 2012


The Registrar was trying to explain to us about a baby we had not yet seen, not yet named held, not yet named.

The amount of time without oxygen, had caused damage to his brain.  Ok so when can I see him? We are not sure how much damage has been caused to his brain. Ok so when can I see him?

Why when I was hearing all this talk of brain damage was my own brain not registering anything? Why could I not take in this important information, process it and come out the other end with ‘your baby has brain damage?’ Why did the World stop for a few moments and then start again with bits of us missing.  That is what it felt like when you suddenly realise that the child you have just given birth to has been hurt beyond repair!

When you are told that your child has a disability that is going to effect them for the rest of their lives, how do you accept it? How do you take on board all that is being told to you and all that is not?

I feel that doctors can give so little information about the future, what will his life be like? will he go to school? will he walk? will he talk? Unfortunately when your child has CP it seems to be a matter of wait and see.  And so you do, you wait and do all the things you need to do, physio, speech and language excercises etc., you put him in leg splints, body splints, even when he tells you he hates you for doing this to him, because at the end of the day you want him to achieve ‘his’ full potential.  So you do it when you are tired, when you just want to scream ‘why us?’  ‘why him?’ you do it because you love him and he loves you.

The World does start again!

A routine is set up and you start to accept things you can’t change, help and advice comes from unexpected places and people, your little man or lady starts to grow up and develop their own personality. So while you do ‘wait and see’ what will be, you start to take joy in all the small steps he makes.  His first attempt at communication, his first giggle, his show of independence, being able to sit up, being told he does not need to use his Kaye Walker anymore.  They have all brought tears of joy, because they are all such small things expected and accepted by so many others, but they are HUGE, MASSIVE things for our little people. Enjoy every little achievement!