Chilli Pepper Plants and Belgian Buns...

Have you ever noticed how many people with walking aids there are in garden centres? Well, I have. Maybe it's because gardening is a a pastime people turn to as they get older, maybe it's because garden centres are popular places to go for those less mobile. There's usually a coffee shop, always a toilet and just enough space to stroll round without getting too tired. There's also the bonus of being surrounded by the beauty and scent of growing things. Now this is not something I had thought about before the monkey, but I've been noticing it ever since. Somehow we always seem to have conversations about the monkey in the coffee shop at Squires garden centre, Roch and I. The first time we went there was not long before the diagnosis was confirmed, and I remember noticing people in wheelchairs, people with walking sticks and I found myself imagining what it would be like to bring him there in a wheelchair. Would he even want to come with me? We found ourselves there again on Sunday afternoon. It was really cold and his walking wasn't too good. He was very slow. The last time we were there together he really wasn't that slow. You know, I don't think he had a walking stick last time - or did he? (So now I'm thinking, when was that, how long ago, calculating time and changes)...Anyway, on Sunday it could have been the cold affecting him a bit too, as we believe it does. Movement very stiff and slow. We sat in the coffee shop and ended up having a rather sad little conversation over the Belgian buns and coffee. Mind you, it's a great garden centre. We came away with a selection of herbs, a lavender, a trailing geranium and a chilli pepper plant. The car smelt delicious all the way home. Next time you're in a garden centre, see if you spot any walking aids or wheelchairs. By the way, I'm not saying it's a bad thing, I'm just making an observation.

Roch Maher, Presiding Officer, we salute you!

So, Election Day on Thursday. That, I imagine, will mean different things to many different people. For Roch, it will be a very special day. It will be his last Election as Presiding Officer. For those of you who don't know, Roch has been involved in every Election, National and Local, since coming to London in 1986 and for every one of them, he has been Presiding Officer at a Polling station in Hammersmith & Fulham. It's a job he loves doing. It involves getting up at the crack of dawn, taking on a helluva lot of responsibility for the day and getting home extremely late that night. Typically, Roch revels in it. He has always been a political animal and being so involved in the actual Election process is grist to his mill. He worries about it beforehand and makes meticulous preparation. Tradition has it that provisions for the day include the obligatory sausage sandwiches and that cold beer awaits his return and this time will be no different. But he says it will be the last time for him. Even with diminished stamina and declining strength, he feels he can still carry out his duties just as efficiently on May 6th, but he can't see himself doing it again. Well, on behalf of the electorate of Hammersmith & Fulham, thank you Roch, for years of dedicated service. Enjoy the Day! Cold beer will await you on your return...

A toast to Roch's mother

Well, it would have been Mary's birthday yesterday. So I think that deserves some space on the Blog. Roch's mother. We raised a glass to her. She never knew about the monkey. I know that was hard for Roch. Which of us wouldn't want a mother's comfort in his position? We were sitting quietly in the room where she was laid out, the day before the funeral, when someone called Roch away and I found myself alone with her. I told her then that Roch had motor neurone disease and I promised her that I would look after him for her. I know Mary heard me.

Enter the Dragon

So yesterday we had a 'site meeting' at the house. Very interesting. Occupational Therapist and Architect and Roch and me. They looked over the plans for the works to the house and the OT told us what would be necessary and the Architect thought about how that could be done. Just one word about the Architect, Chris. He's a star. That's all I'll say. I don't want to embarrass the lad, so I'll say no more.

It's kind of hard to contemplate the changes to the house. Roch is very stoic about it all. When we're discussing options and they're asking whether we want certain features to be permanent - such as ramps, or customising the kitchen, he is firm about making it as easy as possible to return the house to a kind of normality 'afterwards'. It's not easy to hear. I could see it was difficult for him.

It's going to be so disruptive and it will be difficult for the kids. But it has to be done and it has to be done soon. Watch this space for developments.

Good news re: Dragon technology and Ability Net. Someone came yesterday from Ability Net to set up and start the training for Roch. It's good. Actually, it's bloody brilliant. (Voice activated software). Heartfelt thanks to the MND Association. Interesting that the software won't recognise the word 'Roch'. It really can't get it's head round it! Many humans have the same problem...

The old homestead

Feeling very low over the past few days. Maura and I went to the garden centre at Syon Park on Tuesday and it was a trip down memory lane in a way. We took the train and walked down Syon Lane, past the road leading to the old homestead. Maura remarked about how strange it felt to be walking along there without a buggy. I know what she meant. I had been feeling oppressed by a weight of memories. That's where they were babies, toddlers, where Roch and I lived as a young couple starting out on our married life together. So many fond memories of life in that little house. Kate says that she has lovely childhood memories of our time there (I rate that as quite an achievement). I'm not saying they were always happy times. Sometimes it was lonely and we had our bad times too. I'm not seeing it through rose tinted glasses by any means. But I felt such a feeling of loss. I felt so sad. For all of us, but mostly for Roch. For our little foursome as we were then.

We sat in the coffee shop (well, outside - it was a nice day) and I remembered being in the old coffee shop at Syon House with Roch, when Kate was a tiny baby. We had to leave because she screamed so loudly she was disturbing the other customers. My God how she screamed. Actually we had a terrible time with her (trauma at birth is my theory) for weeks after she was born. But that's all part of our history. It's what makes us a family.

Anyway I kind of went through the motions, choosing plants and making small talk but I felt disconnected, like somehow I was watching myself from a distance and observing other people from an entirely different place, a very sad place.

Link to Facebook

Well, I've linked my blog to my new facebook page so now it's public. That's a bit scary...but I'm feeling reckless.
Two days of 10 hour shifts behind me. I was looking forward to today so much! Last night Roch picked me up after work and we went for a Chinese meal to our favourite Chinese restaurant. There I was, bleary eyed, mascara under each eye, head buzzing, looking, as I well know, like crap...but the lure of won ton soup proved too much. Also, I don't have the luxury these days of thinking, "not this time, too tired, maybe another time.." How many other times will there be? Lots, hopefully, but time is passing. It's almost a year now since the monkey entered our lives. Inch by inch it crawls forward on its dirty little paws...you know I can see it in my mind and in a fantasy very dear to me, I beat it to death with a club...

Roch is preoccupied by thoughts of retirement. It's such a conundrum. If he retires soon, will he have many years left (it's money, too) at home, trying to fill the days? Or is he 'wasting' time now, tiring himself out when he may not have many years left? He does need the social aspect of working. It's lonely being at home sometimes - and I'm not counting the company of the monkey.
I think this is very much on his mind at the moment.

We're looking forward to the arrival of the Citroen Bejingo. That will set the neighbours talking! First the windows, then the new motor. The new motor, of course, will be paid for by the DLA money, but they don't know that. Don't get me wrong, lovely neighbours.

Facebook saddo

Well, we have our new windows and you know what? They are gorgeous. There is no 'making good' to be done. Everything is perfect. It's like having a new house! I am exhausted however. As members of my family will tell you, I just can't stop 'putting things to rights' (it's that being in control thing again). It drives everyone mad and I end up like a wet rag. I did have help today, though. Another good thing in my life at the moment - someone who comes every fortnight and helps in the house. Just helps me to keep on top of things. I am thankful for all the little things.

Tom has persuaded me to join Facebook, so I'm there now (just don't write on my wall, mum) - no photo just a faceless silhouette - I am still the family saddo, having the grand total of 11 friends.

Had a conversation with someone yesterday who I must say with the best of intentions (I really don't know this person at all) was advising me about the planned works to the house but I was getting fed up listening to it. "It'll be a mess, love, everything'll be filthy, you'll need (list follows of the never ending list of jobs to be done..." then "You'll need all the light switches changing." I think, 'What?' he nods knowingly, a little sadly. "Wheelchair.." he murmurs. O for God's sake. Now I'm really narked. So I decide to put an end to it. "Well, he won't be able to move his arms, will he? So that's one job we won't need to do." That shut him up.


Next week we're having a site meeting with the architect and the occupational therapist. So that's the next step. Oh and we did that test drive. So it looks like we'll be getting our motability car - well, Roch will. Looks good. The test drive was with the Salesman (a Millwall fan - good sales pitch. Fear of a good hiding if you don't buy...) and a French student who sat with me in the back and tried his own sales pitch once or twice but due to limited English failed miserably. We were sold on it anyway which was just as well...

Planned visits: Mairt and Lorcan coming over tomorrow. Hope they won't be disappointed with the Arsenal at the Emirates (Don't mention Wigan) and - Maura arrives on Monday! Dear Maurie.