Yes, if my life were a Hollywood movie I would not have to deal with watching my child suffer and struggle through life every day.
This is my life, my every moment of my every day. This is my daughter, and this is her reality, and her reality is my heartbreak.
I have blogged previously about the loss of dreams that come with having a child who has special needs... Some days I still struggle with the fact that my child will not have a 'normal' life... but then, it occurred to me... I will inevitably have to take that one step further... I will have to live through every parents worst nightmare.
When you have a child it is unfathomable that your child will die before you. It is not the natural order of things and it just simply isn't intended to be done that way.
But it doesn't matter how long Nicola lives, how healthy we keep her, how much medical intervention we can achieve... it doesn't matter what we do, the simple fact of the matter is that one day, perhaps not tomorrow or next week, or even next year... but one day, I will have to bury my child.
Now some people are going to be shocked by that, or get upset with me, or perhaps even get offended... but please don't.
You see, it is an inevitable outcome for us, and I realise that now... I can't change it... I might be able to delay it, but I can't change it... and while I'm not ok with it - and I never will be ok with it, knowing that one day it will happen gives me the determination to live for today.
So that is what I do... I live for today. I play with my children, I make them laugh, I tickle them and cuddle them and read them stories... I create memories, not only for myself, but for my family... I put on a brave face, I hide my tears and I move on.
But all the while, despite the laughter and the happiness, now I cannot forget... and it's the not being able to forget that is killing me the most. I haven't been able to find a way to deal with this emotion, with this fear, with this grief...
The thing I find the hardest is that it is a feeling that isolates me and again sets me even further aside from my friends and family who just don't get it, who don't understand what my future holds.
How do you cope with something that no one else will talk about? That no one else can see or understand?
What is there to do other than anything that is within my power?
My dishes may not be done, my house is a mish mash of mismatched bits and pieces, my bank account balance is less than zero... but every night my children go to bed happy... we take photos, we paint pictures, we write stories, we create memories every day... memories that will, hopefully, last a life time.
We cherish every moment and live for what is right here and right now. Bring on the rainy day so we can go dance.
"Any good that you can do, do it now. Do not delay or forestall it, for you will not pass this way again."