No 279. `Update.`

I guess the final end to Chris`s story is that the farm was officially sold on October 8th 2015. I am glad in a way he was not here to witness the finality of it all. It was heartbreaking enough to see the stock and machinery be sold.

Although I am curious and in a way excited to see the changes that will be made to the farm, as the new owner is investing much in upgrading the house and yard buildings, I again think Chris would have found that very hard.

He would have been pleased to see a new herd of cattle though now grazing the fields of Gwarth-an-drea.

You stole so much MND, not just the love of my life. I will hate you forever.

No. 272. 'I will take life.'

Well that is it, after cock ups and delays Tom's probate finally came through which allowed the completion of the farm sale. The new owner seems a lovely man and will farm cattle on it and love it which is all we could have wished for really, apart from never having MND enter our lives of course. I am now as they say, on my own, in more than one sense, it is a little scary, but I am sure I will survive. 

Since Chris died I have heard of 4 more people who have died from MND, people I have gotten to know over the past 16 months. Every single one is a tragedy and every single one is heartbreaking. It is the inevitability of MND which is so scary and cruel, let alone what it does to a person. Once you are told, 'I am sorry, you have MND' you are given a death sentence, not quite knowing when your end will come, but knowing it will all the same, while that damn disease steals your physical abilities from you bit by bit for good measure. 

For now I have tried to hide away from most of social media, I am not strong enough at the moment to share other's grief, it is hard enough dealing with my own, but I will come back fighting, I am not sure how yet or when, but I will. 

I am off to spend a few days with my youngest next week, who needs her mum, she does not find sharing her grief easy, we are all different in that respect and sometimes she tells me off for being so open. We have a fun weekend planned, though it will be strange for me to be up there without Chris. We first noticed something was wrong on our second visit to see Chloe two years ago in November, he couldn't keep up with us as we were walking around and Chloe and I teased him about it. Chris just said he liked window shopping, little did we know. It is hard to believe that a month earlier he had been carrying all of Chloe's belongings up 4 steep flights of stairs into her student bedsit, up and down, up and down, just one or two flights nearly killed this little dumpling.

The days seem very long now, I have no focus and still seem to wander around looking for something, not knowing what. I am not weeping and whaling 24/7, I am mostly numb, with just such a sense of loss and emptiness. Even now I cannot quite believe Chris has gone. The nights are the worse, I miss him the most then, during the day I can find distractions even if I am like a butterfly flitting from one thing to the next.

Well the ripples of MND spread far and wide, an era truly has ended for us, but life has to go on, I owe my darling boy that much, else him dying would be an even bigger waste. On the occasions I think 'What is the point.' I make myself think everything is the point. Chris wanted to live with every fibre of his body, but that choice was taken from him, I have the choice to live and for my boy I will take life and live it for him as well as myself. He would not have wanted it any other way.

No. 270. `What is grief?`

What is grief? I should be able to say, I am living it, but I don't really know. It is sadness, it is loss, it is tears, it is anger, but at the moment it is total numbness, I do get tearful, but mainly at night, that is the worst time. I hate going to bed, it would be so easy just to sleep in the lounge, but I make myself go to bed. The loss, it is the hardest then, sleeping in a big bed meant for two, an empty space that should be filled, quoting my daughter, 'Deserted bed sheets haunt my night.' that is so hard to live with. I have photos around me, I have my photo pillow to cuddle. I have my mementos, the silly sentimental things. I have a spotted hanky that Chris had with him when he died and I can't part with it, I tuck it in my waist band during the day and I hold it at night. I get panicky if I drop it, how weird is that? It is a link I suppose, a bridge from here to beyond the veil.

Yesterday I felt crap, I wanted to crawl under a rock and stay there and wait for this dark cloud to pass. My head was thick and heavy and I was feeling pretty low and sorry for myself. I took to my bed and wallowed in my grief.

Today is another day and it is 4 weeks today since Chris died and I miss him so bloody much, he should be here with me, it is just not fair.

It was his wish though to have some of his ashes scattered on the farm, so some of the family joined me and we walked out to the river today and I scattered them on the hillside there. It is strange, I felt so bad yesterday, but today I was numb again, it felt so weird, there I was scattering some of the remains of my boy and I felt nothing, yet I cannot bare to let go of a hanky of his, this grief thing is very strange.

I had set up a bereavement group, rather naively, not knowing so many would want to join and I realised that I am not really in a place to help others yet or take on board their own pain. I felt bad about that, but it is enough dealing with my own and my children`s grief at the moment. I am glad I set the group up as it was obviously sorely needed and thankfully someone else has taken on running it, but for now I need to step back and just be a bit selfish.

I guess we all need to take grief one day at a time and ride that wave. It is horrible when it hits for sure, but I am certainly not alone with it, I wish it weren`t so, but I`m not.

Tomorrow is another day, let`s see what it brings.

No. 266. 'Explode.'

Do not panic, no cushions, animals or structural buildings were harmed after this blog, I just ate a great big bowl of cereal instead.

Today I feel like I want to explode, I want to scream and shout and curse and smash things, how dare this f****** disease take my husband how dare it. What the hell did he ever do to deserve that eh?  He was sweet and gentle and hard working and I never heard Chris say a bad word about anyone, he put up with a moaning Minnie for a wife who is as clumsy as hell and he was so patient and kind and so very brave.

Oh this rage that is simmering, if I could get my hands on this disease, this hateful, cowardly, vile thief of a disease, I would stamp on it, stab it, punch it, I would strangle it while it too gasped for breath, I would let it get a taste of it's own medicine. 

Why, why, why my darling boy, why?? Really....what the hell did he ever do, but be a good person. I don't understand the randomness of it, it is so very cruel.

None of what I have means anything without him, it was his not mine, it is all so very wrong.
This disease is a *#$*#^^**#$€#¥¥$%#~~*}. And no that didn't help, but you get the idea. 

No. 259. ` Farewell for now.'

So yesterday we said farewell to my darling boy. It was a surreal day where I was carried along on that tsunami wave which dipped in and out of reality and emotions.

I was up early, hoovering and tidying, awaiting family to gather. My brother and his family came down from West Sussex and I also had friends who had traveled down over night to attend. As guests arrived I poured out the malt and we had a small toast to Christopher (hope that was OK my darling?). I was doing fine until the hearse arrived with my darling boy and then I saw our flowers for the first time, I lost it then. Denise had the most amazing flowers made from the siblings, it was a TR7 ( I bet you loved that eh Chris?) It was fantastic and so fitting. I was thrilled to see my cousin Christine and her husband Mike had made it too.

We gathered as a family behind the hearse for the short walk to the church, Christopher's beloved Leyland tractor led the hearse to the church and the Matbro handler stood in the front meadow with it's bucket held high in salute to the one who drove him the most.

I found the whole thing so emotional I could hardly breathe and I walked in first after Christopher with Tam and Tracey holding my hands. Jordan was one of the bearers as was Kevin, Chris's brother. Jem, Chris's closest friend plus Vivian and Peter, other friends, we're also bearers. The church was packed and I just couldn't look at anyone. That was my boy there in that box, this really was time to say goodbye and I couldn't bare it.

Two lovely ladies from the church who knew Chris well read a poem and the reading. I wrote the eulogy which the Vicar read and Kevin read an emotional poem followed by a few words of his own. Chloe had always wanted to sing for her dad, but she wasn't sure if she could do it, so we didn't put it on the order of service. She changed her mind what she wanted to sing on the way home from the airport on Wednesday, she decided she would like to sing 'Wind beneath my wings.'. We downloaded a backing track and the lyrics when we got home and set up her PA equipment in the church on Thursday. She gave the vicar the sign that she could sing during the service and went ahead with Tom in control of setting the backing track going. I can honestly say I have never heard Chloe sing so well. I thought there would be nerves, but there wasn't. She even made grown men cry. (I bet you had a few tears too eh my darling watching over her?) Even the vicar showed signs of emotion when she read some words about Chris, she knew him well too.

Chloe did lose it a bit after, but that was understandable. Everyone said they had never been to such a moving service and that it was a fitting send off for my boy. 

After greeting people outside and thanking them for coming, we returned home for a quick freshen up and then Denise and Harold took Chloe, Tom and myself to the wake at The Camel Centre and yes, there are actual camels there right outside of the window.

The wake was a blur really, with so many people wanting to talk to me. I did find that hard as I would rather hide in the background than be the centre of attention, so I constantly reminded myself that everyone needed to share their love and memories of Chris and for Chris and that was important. The Oates family did a wonderful job of the catering, with plenty to eat for everyone. Kevin set up the slide show that I had prepared and people watched with amusement I think, seeing Chris as a baby and small child as well as a grown man.

Later was the final part of the farewell, the journey to Camborne crematorium. I drove Chloe and Tom there and Tam went with Jordan and Tracey. It was just close family there and it was a very short service, but it still was a very emotional experience and Chloe in particular really broke down, something she needed to do. Tony, from Pendles said he would drop the flowers back to our bungalow for us.

We all as a family were then treated to a meal at a nearby restaurant by Denise and Lucille.

We then traveled back home, the flowers were there to greet us when we got back. The attendance cards were waiting there too and over 200 people attended apart from us family, what a fitting tribute for my boy.

So that was it, the final farewell to my darling boy, (for now anyway my darling, till we meet again.)

This morning life had to carry on. I was up a 5am to take Chloe and Tom to Newquay airport as they had to get back to Brighton. It is more than a hour trip to get there and we left in the dark, hitting patches of fog along the way. On the way back the sun had come up and the mist settled low on the roads and had an ethereal feel.

OK Christopher my darling, you never did tell me how I was supposed to live without you, I guess now is when I really begin to learn. I will love you and miss you always my boy, this was not how it was meant to be. 

Fly free my darling, fly free. ❤️

No. 258 .'Stardust.'

I feel I am being carried along on this bereavement wave, not quite knowing where I am going or what the hell I am doing. 

I woke really early again, Chris is still the first thought on my mind when I open my eyes and the last before I sleep. I cuddle his pillow all night, it gives me some kind of comfort.

Chloe came home yesterday with Tom, it was so good to see her, we cuddled so hard at the airport and shed some tears. She feels so guilty that she wasn't there when Chris died, but I don't think he would have wanted her to see that. She misses him terribly. I gave her his wedding ring, it will be a special keepsake for her, something of her dad's. I will get her a chain so that she can wear it around her neck. She said she will never take it off.

Chloe is so full of anxiety and isn't sure if she can sing tomorrow, but that is OK, it will be a difficult day for all of us, we have had lots of hugs and cuddles and talked about Chris loads.

A strange thing happened last night. I was very restless all night, I woke suddenly and all of a sudden I saw this huge photographic montage of photos of Chris, so many photos, it was right there in front of me and then all the photos separated and drifted apart and slowly each one burst in stardust. It wasn't a dream I swear, it was real, or maybe I imagined it, I don't know, it seemed very real. It didn't frighten me and it was strangely comforting, I can't explain it, but I felt like my darling boy was there.

Chloe didn't sleep, she is so full of fear and anxiety about tomorrow. It will be a difficult day for us all, saying farewell to my boy, but I hope he will feel all the love that there is for him. She decided she wanted to see Chris. It was tough for her and she did cry, but I think with time she will be glad she went. I said my final farewell to my boy in there too. It is strange, I feel more disbelief in some ways about all of this than I did the day Chris died, so many conflicting feelings and emotions.

Later this afternoon we took Chloe's PA system down to the church and set it all up. Chloe changed her mind about which song she wanted to sing, even though she may not be able to sing it anyway. It will not be on the order of service, so if she changes her mind it will not matter a bit.

I need to try and get some sleep, tomorrow will be a long and emotional day, I actually feel nothing at the moment, it is all like one bad dream. I will hate that walk into the church with everyone staring at me, at us. The funeral service, the Wake, the cremation service, so many farewells, so many goodbyes.

Nothing will bring you back, nothing will fill that hole in my heart. 

Look what you have done MND, look what you have stolen, you have no remorse, you have no compassion, just a selfish greed to steal life. I hate you so much.

No. 248. 'To my boy.'

Good morning my darling Boy. When I woke this morning I thought I could not hear you breathe and then I put my arm across and remembered that you are no longer here with me and that heavy sadness came over me again. I miss you so much my darling, so very, very much.

I was so tired yesterday, lack of sleep and grief made me so very tired. Denise and Kevin were so sorry to not have been here when you left us, but they were soon after. Jordan, Tamara and Tracey were here too. We have all supported each other in our grief at losing you. I didn't know it would be so quick, when I told you you would get sleepy I thought it would be just that, I did not know we would lose you so soon. The doctor told me you were struggling my darling, your lungs just couldn't get enough air in, you had suffered enough, your body needed peace.

It was so hard telling Chloe my darling, to hear her cry on the phone and not being able to hug her, it was so hard, she was with Tom at least.

Jordan has been so good Chris, he phoned Jem and Fred for you, I could hear him, it was very hard for him, but he did it all the same.

I went to bed in our own bed last night, the room felt empty and cold without you. I took that special pillow that you were lying on and put it in the bed, I could smell you and hug it and make believe it was you. I found myself wanting your things. I keep your blue spotted hankie with me, it helps me feel close to you, is that daft.? I have put all your things safe my darling, I have thrown nothing away, they are all still here for you.

We had such different tastes didn't we my darling, opposites in so many ways, but recently we would love to watch Casualy and Holby City together snuggled up in bed. I took a whisky to bed last night, partly to help me sleep and partly in honour of you, to raise a toast to you. So many raised a glass to you , that moved me so much. I fell asleep watching Casualty, at least sleep came to me then.

I have been over whelmed my darling at the love and support people have shown who don't even know us, so much kindness and love, I guess your story touched people so much. I wrote a blog yesterday too, I needed to get it all down, I was always weird like that wasn't I Chris? I talk way too much. I couldn't believe this morning that it has had over 1000 views, I don't know that many people Chris, I don't understand, all I do is share my thoughts. 

I am still lost without you my darling, the void you have left is so deep, how do I cope with your loss? I want you back so much. Tam got into bed with me this morning and we hugged and cried and I found that video of you I did last year when you were merry on a whisky mac, do you remember? I love that so much because you told me you loved me and you were so happy and smiling in spite of everything, but that was you Chris, that was always you.

I chatted to Chloe, she said she is numb, I hope she will be OK, you know how she bottles things up. She wants to sing at your funeral my darling, can you believe that, I thought she would find it too hard, but that is Chloe, that is how she expresses things, though music. 

Anyway, sleep well my darling, I feel you with me in my heart.

I will love you always.

Xxxxxxxxxxxxxxxxxx