Monday, 15 July 2013

The Pain In The Truth

You are sitting in the hospital. In that room that you've been called through to.

The consultant sits with you and your family, quietly.

You know it's not going to be good news.

Your little bundle of joy isn't ok.

You knew that really.

It's just hard to admit it to yourself.

A parent always knows, before they're told.

Instinct they call it.

When it's your first born, it's hard because you simply don't know what to do.

The questions start to come...why? What did I do wrong? Can I fix it? Will it go away?

It's awful, you battle with your thoughts and the questions hammered at you by friends and family.

You can answer the questions, they are just not ok, not a healthy little bundle of joy, and they never will be.

Life as you know it has suddenly changed significantly, and you have to learn to live a different life. A life full of appointments, surgery, medication. The development process is painfully slow, and other parents look at your child, exclaiming at the fact that your two year old is still bottom shuffling...and advising you to get a baby walker.

If only it was that simple...

Then they see your little one with a walking frame, they lower their eyes. You knew they had been criticising you and your precious child, they thought you hadn't been stretching them. Their little ones run around like little bombs. Your little one flinches as they run close by, your little one cant get out of the way.

Their little ones call their friends name out to get attention, your little one looks at them, wondering how they did that. An incomprehensible noise escapes from their mouth as they try to join in. Their parents try and teach your child how to say 'car' and 'flower'. Like it's going to help? what about those hours of reading to them, the two plus years of reading the same book twice, every night...still no words from the book have been repeated. The parents think you just don't do it.

parent and toddler groups become a nightmare as the 'cliques' form, and time after time, your child and you are left on the curb side...not invited to play dates, well, it wouldn't be any use, little one wouldn't be able to go on the soft play...would they? Parks?...they cant enjoy the slide...can they?, picnics?..they can't eat the food can they...?

Yes, you become quite lonely, left out of everything and you wonder...WHY?

That appointment, the first of many, will become important to you. The consultant, the one that understands your child, the one who has answers, the one who offers you support, will become so important to you.

This is what happened to us.

It's so hard, when it's your first child, and you just don't know where to turn, and so many people seem to judge you on what they are experiencing.

Then you learn, you've been through the pain that has come out of the truth of your child's difficulties/ diagnosis. You will come out the other end, you will meet fantastic people, and you will feel empathy, sympathy and support. This is given by those who are also going through it.

Don't despair.We are going through this for the third time, and now, I try and educate those who simply don't know, and don't understand the affect that rare genetic conditions, development delay and ASD can have on an entire family. I also try to help support those who are starting to go through it, if they need a shoulder, mine is there. I understand, I've been there, I know how they feel and I don't want anyone to feel alone through it all.

This is why I created Virtual Party Friday, this is why I created this website.To support.

Follow me @katesvie/ @vpfri