Emotional rollercoaster!

Our summer fayre is happening next saturday, which is to raise awareness of WHS and to raise funds to donate to Wolf Hirshhorn Syndrome Trust. I also hope that families have a lovely day and enjoy themselves.

Organising this event has been a rollercoaster of emotions. Lots of ups and down. We have had companies bluntly tell us that they cant support our cause. In this current econmic climate that is totally understandable. On the occasions that I have been in a store asking for support in some way, generally with a friend, it is hard when someone does not want to even hear what you are arranging your event for. But the people that say yes, more than make up for the harsh no's. I have been so touched when people donated for personal reasons. Sometimes you really dont know what peoples stories are!

The main thing I probably wanted to explain in this blog is about a new experience.
It is difficult to put into words.

My Kian as you will all probably know was born in 2007 and I feel very lucky to have him. Last week when having an assessment done at home, the assessor said "he drew the short straw". I replied " well maybe, but he is lovely". The lady didnt stay long and we were okayed for our assessment. It is hard sometimes as you want people to know they are luckier in life than others, but as I have said before I do not feel unlucky to have Kian. When I check on him in bed and I know he is fine I look at his innocent little face, his cute little toes and I get that surge of love.

But I am now in contact with parents of children with whs who have lost their fight for life. This is hard, but I am so privilaged to become to know them. I look at pictures of beautiful, innocent children who should be here. Each picture has a resemberlance of Kian, and that is because of the syndrome. Our children tend to have a look of each other at some point. I am confused of how I should feel. I feel blessed because I have Kian, but so sad for anothers loss. Craig told me tonight, what would he do if something happens to Kian. I need to be reminded sometimes that Craig feels how I do at times. He does really worry like I do. Reality is something that just all of a sudden hits you in the face. I dont plan on Kian going anywhere, but more needs to be done to look after our whs babes. I know why Im trying to raise awareness of the syndrome, our babies our precious no matter what age, and they need looked after. I want to help make a difference no matter how small!

I am not a religious person by nature, but bless all our children past and present xxx