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Hello Joy
Like you i am very young with a small child, unlike you i am still stage 2 (knock wood), but i have fears every day that keep me awake at night, thats the very hard part of this disease.
If somebody said "Ok Nikki you have exactly 5 yrs left to live" i think i would find that easier as i could make plans and do what needs to be done, but like all of us i never know when my name will be pulled out of the hat and i go to meet my maker.....i guess it has always been that way, but now it is so much more a reality, at 33 i thought i had at least another 40 yrs left to do the mummy and grandma bit, now i am not so sure if that is gonna be the case so i try and enjoy my time with my son and make him realise he is my pride and joy and how much i love and adore him.
Joy, none of this is fair, i don't want to get on my soap box and start ranting about the injustices of this world, but i can tell you a story which helped me somewhat.
I went to a party a few months ago, a huge affair in London with lots of posh people and their flamboyant lifestyles (i was only there with a good freind who works in the media!!) i took a look around the room at all these people and i thought to my self, you know what i have in common with these people....we are all going to die, be it tommorow, next year or in 50 years, at some point all these people in this room siping champagne and living the high life are all going to die just like i am at some point.......before that i felt very singled out and that mortality had picked on me, i got angry and felt that life had thrown me a real c**p shot, i still do alot of the time, but just by realising that everyone dies no matter how pretty, rich or successful they are made me feel not so isolated or chosen, if you know what i mean.
A good freind of mine lost her 9 year old son to Neuroblastoma recently, that little boy changed my world, he never ever complained, he knew he was gonna die but he faced that with such dignity and without fear, my freind was the one panicking and frightened, he was just so peaceful and at at ease with it all, he said he was quite looking forward to playing with the angels in god's garden, i was stunned by his grace at a time like that....i felt so ashamed to be the one moaning and complaining about my ordeal after being in his company for an hour or so. I am sure he is there right now dancing with those angels.
Try to count the blessings of eveery day Joy, you are here now for your little girls, thats all any of us have is the right here and now, tommorow will take care of itself.
All my love to you
Nikki
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