Every day I wonder if I`m doing the right thing in baring my soul like this. In reality it`s hardly the whole world, but every now and then someone says thank you or that it helps, so I guess it is worth it. I write this mainly for myself. A diary if you like, I don`t want to forget a day of this nightmare, I don`t want to forget how it has made us all feel and what it is doing to my husband. I want to always feel this fired up to raise awareness for MND, little shy, wouldn`t say boo to a goose me. I want to also remember that there is also a lot of love and laughter in this situation, that we do smile and have fun still and that just sometimes MND doesn`t win. It might be stealing Chris`s body, but it isn`t taking his soul or his mind or his amazing sense of humour and his strength helps me to be strong. I feel shame on the days when he has to support me, but I know he doesn`t think any less of me for it. I did feel low this morning, my daughters did too, but we cried, hugged and talked and then carried on as we always do. Our anger and emotions vented for now.
Our youngest daughter has been working with her dad on the farm today to earn some money and it allows her to spend more time with him too. They have such a laugh and giggle out there with so many smiles and so much fun. She drives him around and he loves it. More of those precious moments.
After dinner Chris and I went to test drive the Kangoo, although it was more expensive to run, we have opted for the automatic, it was better for Chris now his legs are weaker. I`m pretty short in height, but it didn`t feel too big and was nice to drive. It`s time to say goodbye to Tizzy as we decided to buy it, the end of an era, can`t say I`m looking forward to the next one too much and this sounds completely wrong, but bring it on, as they say. We`ll make sure there is more to life than MND.
The MNDA shared my blog on their Facebook page today. When I got home I was shocked to see the views on my blog had gone up by over 700 and I was so very touched by messages that were left by people on my post, where MND has touched so many lives. It helps to know we are not alone, but still so very sad to know how many have shared or are sharing this journey with us today.
I`ve said this before, but raising MND awareness is so important, how else can we get people to donate, how else can we get funding for research, how else can we find a cure. So today I keep writing my blog, trying to raise awareness my way.
The anger is done for now, today we get on with life and just live, that`s all any of us can do. It`s OK to be angry or sad sometimes, but we must always find something to smile about too . Most importantly of all though ,we must never give up having hope, because to give up hope means we give up the fight and that is something we must never do.
