In the past 12 months I have become a totally new person.
My future, our future, the future of our family is now different.
It is expected that when a person gets married and has children, there is a set pathway for the future.
Amelia's diagnosis of Ataxia Telangiectasia 12 months ago has guided us off the normal pathway.
We now have an 8 year old daughter who cannot do homework or after school activities. She is unable to attend school everyday, ride a bike or dress herself.
Any independence will be slowly taken away from her and she will become totally reliant on those around her.
My degree in Early Childhood now appears obsolete because I am needed everyday.
Amelia needs me everyday......for everything.
The rollercoaster of emotions are now my friend.
I have learnt to "roll" with it rather than fight it.
Amelia will not be calling us to get picked up from the pub.
She will not be getting married and having children.
We will be grateful if we still have her in her twenties.
12 months of accepting everything has changed.
Our future is now very different.
and this is a very BIG but.......
We have learnt the importance of each day, each achievement and every smile.
We have learnt the true meaning of smiling, laughing and creating memories.
We have learnt that "life" is what we make it and can be amazing no matter how short.
You suddenly realise that if it all ended tomorrow........would you be happy with the life that you lived ?
Would your husband, partner or friends have happy memories of times that they spent with you ?
Would your children remember dancing with you or that you were always doing jobs?
In the past 12 months I have taken on the responsibility of creating an amazing life for our family.
Small things, big things.....very,very important things.
No more negativity and whinging (although they still appear occasionally).
As many of you know, a beautiful friend of mine died recently.
She had no warning.
And she was just beginning a process of self discovery.......finding real happiness.
We have been given warning.
It is not fair but we have been given the chance to appreciate life from a new perspective.
I do not have time to waste worrying about being self concious anymore.
I do not have time to waste wondering what people think of me anymore either.
There is something so much more important in my life to care about.
Sunny days, hearing the rain, a mocha coffee, a cuddle or finally seeing Breaking Dawn Part 1.
It all takes on a new meaning.
An appreciation that life is short and to enjoy every single moment.
I want to have fun.
I want Amelia, Tom and Scott to have fun.
One of the biggest realisations in the last 12 months though is the relationships with others around us.
Friends, family, neighbours, strangers, local shop owners, teachers and other parents.
Friendships, conversations and relationships are taken to a new level.
I cannot explain the deep, powerful bond I feel with so many of you now.
Some people I did know before and some I did not.
The protective shield I often feel surrounding us is so overwhelmingly strong.
The other families who have been handed the curse of A-T have become friends, an information source and a sympathetic ear.
Each child is so different but with so many similarities.
All around the world we lead different lives but are ALL watching our children deteriorate in front of us.
But a lot of us speak of the appreciation of everyday.
In the last 12 months I have had one very firm thought.
Amelia Grace Nicholds WILL have the most amazing life.
She will be surrounded by positivity and happiness.
I WILL NOT let her feel the pain and sadness that we feel around her.
No regrets at the end.
.....to be continued.......