Thursday 31 December 2015

No. 271. 'Reflections.'

A new year begins tomorrow and I have been looking back at my blogs from this time last year. I cannot actually remember what we did on New Year's Eve, I know on January 1st we went to Redruth cinema with some friends, to support the film 'The theory of everything.' We set up a MNDa table in the foyer to raise awareness.

I truly never really thought that would be our last new year together. We both thought Chris had more time. 

Yet here I am facing a new year without my boy in my life. My children are grown up and moving on with their lives and that is as it should be, but I am spending more and more time alone. Imagining a future by myself takes some thought. I am still a little lost as to where to go with my life. I would like a job, a real purpose again. I would like to paint again properly. I want to learn how to live alone and not be scared by that thought. I will never stop missing Chris or loving him, but as much as I dream and fantasise, he is never coming back. I am not sure I will entirely come to terms with that fact and I am not sure I really want to. 

It will always be wrong that he is not here, that he got this awful disease, that we will never know why. The changes and losses we have both had to deal with over the past 12 months have been too much to bear at times, but that is life and I have learned on more than one occasion in my life that you never know what is around the corner and not to take anything for granted.

When I first thought Chris might have MND I couldn't quite comprehend it. It was one of those 'But this only happens to other people.' kind of moments. I knew enough about this disease even then to know how scary it was. Sometimes our fears do become our nightmares, sometimes bad things are all to real.

Tonight I will be with all my family, excepting Chloe and Tom as they are sharing new year with his family. We shall all though raise a glass to a most wonderful man, we shall mourn that he is not with us, but be grateful that he was part of our lives for as long as he was. He saved me and brought me back to life many years ago and now I need to try and move on, but it will not be easy. He will always be with me, I know he will and when the bad days hit I will grieve and cry and succumb to the wave and wait for him save me again as the wave passes once more.

I also remember all the brave MND Warriors I have gotten to know and particulary remember those who have become MND Angels like Chris. Too many brave souls that have been taken too soon, too many broken hearts that have been left behind. I will fight back as best I can to help the MNDa, along with 1000's of others, to find a cure for all those who are still fighting for their lives.

To my Christopher.
I will do my best my darling boy to not let you down, to make the right choices, to take care of your daughter and your legacy. I will do my best to live each day with you and for you, to never forget you, to never stop loving you, to make sure you are with us when the special times come. You live on in your daughter, I see you in her smile,  and you will live on in your future grandchildren. You will have the love of us all forever.

Fly free my darling, fly free.






Monday 28 December 2015

No. 269. 'Is it me?'

Who is this person there below and why am I up here? She looks like me, she talks like me, but it can't be me because I am here. 


She looks so sad, so empty. She shows no feeling, no emotion, she just gets on with her daily life robotically, routinely. She embraces the love and happiness of those close to her, she is still there for them, but her own happiness is lost somewhere, her zest has gone, her reason to live at times evades her.

But then I see.......is it me? 

I think this thing called grief has wrenched all these things from her. She wants to feel truly happy again, she wants this pain to leave her, the pain that was left when her love was torn from her. It left her so incomplete, so bereft, so heartbroken, so empty, so lost. She mourns her lost past, her lost present and her lost future, oh yes she mourns that most of all. The future he was meant to be part of, that future looming without him that leaves her flailing in the dark. How does she live without him, what does she do? 

I see her grateful for her children, for their life, their future, they are a light, a beacon, that gives her hope in this future void.

Sometimes the pain, the grief, they take her beyond her physical body and it carries on without her. It is how she survives this utter, devastating loss.

But then her mind and body are reunited again and she has to feel, she has no choice.
And then it hurts, so bloody much and the only thoughts she can think, through the jumbled vocabulary of her present life, that rise beyond the pain, are that she wants him back. She wants him back so very, very much. There are no words to consol her.

And then I see, I feel, I know.......it really is me.

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 breakfast..how 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.)



Wednesday 2 December 2015

No. 266.'The greatest gift.'

Sometimes living with MND and dealing with the aftermath, can make you feel like you are drowning in mud. It can seem hopeless and exhausting.

After weeks of nothing but numbness I have been smacked in the face by grief big time. I have no idea what set it off today in particular, preparing for Christmas maybe, I don't know. I have been having flash backs all day of the last hour of Chris's life and feeling that kind of guilt that everyone feels when someone dies, wondering if I should have, could have done more. The tears won't stop flowing.

Some people have said to me that at least when you know someone is going to die you can be prepared, that it is better than a sudden death, but I don't think there is any difference. I didn't expect Chris to die at that moment, that hour, that day and the torture of watching someone you love die slowly in front of you is absolute hell, let alone what they are going through. Maybe it is this month, this special time of Christmas, that has made it feel worse. 

We were all used to Chris working over Christmas when he was well, the cattle still needed looking after, but he went to midnight mass religiously every Christmas Eve (excuse the pun) and we had our little routines. He and I always opened up our stockings full of silly cheap pressies before we went to sleep on Christmas Eve and then he was always in around 8am, after having gone out to work at 6am, for pressie opening and would be in again for the Christmas dinner and then stay in for a couple of hours after to play games and stuff. It will be so strange without him here this year and he will be sorely missed. We want to try and have a special day though, even though Chris won't be here in the physical sense, we will lay a place for him at the table and I know he will be with us in spirit.

Little sparks of light can perk you up though. I noticed I had a £20 donation on my JustGiving page, it was from Chloe. She had baked a load of cup cakes and taken them into BIMM. She didn't think she had been very successful as she had trouble selling them, in her words, to 'Tight students.' but to think she went to so much effort, well I couldn't have been more proud if she had raised £2000. I know Chris will have been so proud of her too.

Special times like Christmas are always going to be difficult, the missing him will always be a bit worse then and the hating of MND multiplies far more than I could have ever thought possible. Two conflicting emotions, deepest love and absolute hatred, but I think it will be love that will be MND's downfall eventually, because out of our love comes the determination that a cure will be found one day. 

I know it won't bring my darling boy back, but to know that no one will have to watch their loved ones die of the cruelest disease on this planet, well that will be one gift I will treasure for ever.

Meanwhile I will drag myself out of the mud on to 'numbness' beach and wait for the next wave of grief to hit again.