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Tuesday, 29 December 2015

No.270. 'My battle cry.'

What is this thing MND, that turns a body on itself? What makes it relentlessly take away it's own existence by killing it's life force. What makes it so cruel and heartless? It has no compassion, no respite, no reprieve. It's mind never wavers from it's relentless course. To never stop till that last step is trod, that last word spoken, that last swallow choked, that last breath bravely fought. 

Yet in those final hours when it knows it has won, it has yet to defeat that spirit. To gaze into the eyes of the physical self and still see love and fight and passion, it will never take that. The last 'I love yous' that are expressed in so many different ways. It cannot steal that. A touch, a whisper, the gentlest squeeze of your hand, and those eyes that shout out love.

MND, you steal and have stolen so much, forever taken, but you will always be bravely fought. One day you will be defeated, that love and fight lives on beyond your cruel theft and you will be the one to die one day, never doubt that. In the taking of each and every life you have inspired 1000's more to fight back. An army is advancing and your days are numbered. 

Don't ever doubt that for a second. To those left behind when you have done your worst, amongst the grieving and utter loss, the only consolation left to them is that you will meet your own end one day, that MND will be consigned to history books and and we will all rejoice to know that no one will ever be taken by you again.

That will be the day we will have won.

Thursday, 24 December 2015

No 268. Merry Christmas and keep fighting.

I have been dreading Christmas Eve more than anything. It was a time when late at night Chris would come in from midnight mass after he had been working all evening (when the kids were young I couldn't go) and I would grumble at him at yet another Christmas Eve on my own with the kids. We would then open our own stockings full of silly little cheap pressies before we went to bed and then we would snuggle and hug, all grumbles forgotten. We would be woken early even when the kids were quite grown up, to see them open their stockings and then Chris would disappear out to work for an hour before I long for those Christmas Eves again. They weren't perfect story book Christmas Eves, but they were ours.

I miss everything about my boy. I want to hug and hold him so much, something that was denied us in the last few months because of his breathing problems. I want to kiss and cuddle him, talk to him, laugh with him, see his smile, hear his voice, I want him all, I want him back. People tell me he will always be in my heart, but it will never be enough, I want what I can't have, the person, the man, my love, I just want him back.

There are many brave warriors out there still fighting MND. MND has been kinder to some and given them more time, others it chose to take sooner like my Chris. It has nothing to do with how much someone fights this awful disease, I believe it is just random luck as to whether it takes you sooner rather than later. 

As mentioned before Chris feared he would not be here this Christmas, but deep down neither of us believed that he wouldn't be. His MND didn't seem to be progressing fast, it hadn't affected his breathing, he was sure he had more time yet. He did not want to die and although he didn't shout it from the roof tops, he was fighting MND with every fibre of his body.

Chris acknowledged MND and impending death only as little as was needed. Rarely did he admit that MND would end his life early. In his last few weeks he would not discuss funeral arrangements or stuff like that. I knew he wanted to be cremated and have some ashes spread on the farm, I managed to get him to chose one or two hymns, but that was it. 

Chloe had come home to visit Chris in the last week of his life. She and Tom had a wedding to go to on the Friday and Chris insisted that they go back to Brighton and enjoy themselves. He kissed and waved her goodbye and I could tell he was very sad to see her go, but in hindsight I do not think he wanted her to see him die. The vicar came to see him later that day and he said things had changed. I asked what he meant, did he mean as in dying and he said yes. That really upset me, it was the first time he had acknowledged that he was actually dying, possibly close to death and that broke my heart. The next day he asked for his sister to visit. He did not want her to leave, he told her he felt different, again he felt he was dying. I asked him if he was still fighting, did he want to give up? he said he was still fighting to live more than anything.

So what I am trying to say is that a fighting spirit is important, never giving up is important, but if MND decides to take you sooner rather than later, it does not mean you did not fight enough. MND does what it wants, regardless of how much you fight. Fighting it while you are alive makes living with it a little more bearable, makes you feel a little more in control, even if the reality is so different. It is important to be angry with it, to put two fingers up to it, it helps our intellect believe we can win. It gives us hope.

Meanwhile our lives go on, they have to. I am going through the motions, but I am thoroughly enjoying having my youngest home, though she sadly goes back on the 27th. We have had fun doing mummy/daughter stuff, doing baking and Christmas preps together. It has been good.

Tomorrow a place will be laid for my darling boy, we will raise more than a glass or two to him and we will pray that 2016 will bring a much needed cure for all those still living with MND. May MND show some benevolence and allow them to live till that day comes.

And to all those who have lost someone they love to MND, especially those I have gotten to know, I send you so much love and hugs. If MND had never entered our lives I would never have gotten to know you, but your love and support has been so very much appreciated. We will face 2016 with part of us missing, but we will all be here for each other. My life has been made richer for knowing all those who have been touched by this hideous disease.

Merry Christmas and love to everyone.

Wednesday, 16 December 2015

No 267. 'Welcome distraction.'

I feel like it has been a while since I wrote a blog, but not that long in reality. Life goes on as it must.
Going to the charity shop a couple of mornings a week has been going well, the ladies are a nice bunch and they make me laugh. I prefer to work behind the scenes for now though, I don't know why, but I can't face working in the shop yet, but the manager is fine with that.

One day blends into the next with grief swooping in when it feels like it. It hit badly one day last week and I spent a long while chatting on line with Chloe. I had been thinking about getting a new puppy for a while, Chris left this huge hole in my life and although of course he can never be replaced, especially by a dog, I just felt this need. I wasn't sure if the timing was right as I still have two very old dogs, but I had a feeling a new puppy would be a good distraction for me in many ways.

On impulse later, I checked out a web site I had been following for a while. I saw some cross breed puppies for sale in Falmouth. I took the plunge and gave the breeders a call. Long story short I fell in love with a little boy pup and picked him up the following week. Chloe helped me name him and we called him Toby. He has been with me almost a week and is nearly 10 weeks old. He is a little handful full of mischief at times, but he is also very bright and very cute. He should be smallish when fully grown which is what I wanted. He really has distracted me and giving him cuddles is very comforting. I am not sure what Chris would say at me getting another dog, especially if he saw what he did to the carpet in the lounge earlier, but I hope he is watching from afar and approving of this new little life who is a distraction for us all.

Chloe came home from Brighton last week with Tom and it was so lovely to see her again. She has been terribly home sick this time, especially now and mummy hugs were very much needed by both of us. Chloe and Tom adore little Toby as does Tam. The older dogs are rather more blasé about his presence.

We are busy planning a nice Christmas and have a family get together to look forward to on Sunday. I know Chris will be here in spirit and will be happy that we are having a proper Christmas, I do know he would have wanted that.

I went out to a Christmas lunch with some friends in the village too this week. Part of me did not want to go at first, but I was so touched that they asked me that I said yes and was so glad I did, we had a lovely time.

I miss many things about Chris not being here of course, one of them being able to tell him things. I would chatter away about what I had been up to and he would quietly listen, I do miss those simple things so much. I still chatter away, whether he listens or not I have no idea, but I would like to think he does.

It is hard to believe it is just over 3 months now since Chris died. The missing doesn't go away or the hurting, but I suppose you do learn to live with it. There is no other choice really is there?

Anyway, there are a few more firsts to face soon with Christmas looming, but we will face them all together like we always do, as a family.

Merry Christmas Christopher my darling, I love you and miss you always. The fight continues.xxxxx

(Last Christmas, precious memories.)