Monthly Archives: November 2012

November 26th


Love the line in Laura Marling’s song from the last post: ‘let it always be known that I was who I am ‘. I feel it sums up the human quest to be true to oneself. As I said before my body is crooked, twisted and unreliable but inside I am well thanks to this eye-gaze computer which allows me to express myself. I honestly think I wouldn’t have made it this far if it wasn’t for this amazing machine. I feel I am being true to myself in writing this blog.
I was thanking Jay last night for the great job that he ‘s doing especially at weekends with the kids and the housework and everything. We spoke about the blog and he said how he feels it gives me back a sense of the dignity which has been stripped away by this horrendous condition that makes me completely dependent on others.
We managed to get to Smyths Toy Store on Saturday to pick up some Christmas pressies for the kids. I was thinking of how, in 2009, I was tearing around Mahon Point shopping centre for the same cause. I had been driving without lights on and somebody went out of their way to tell me following me home. I couldn’t believe I had been so stressed in only November! But I suppose that’s what mothers do! Always thinking of their kids and how to make them happy.
That’s been the hardest thing, letting go of the urge to do everything for ours. It was total heartbreak last year when strength and power were gradually leaving my body. No longer being able to do anything for our most precious little darlings. But it’s easier now. I console myself with the thoughts: ‘I am here for them now ‘ and ‘I am here doing my best despite physical restraints’. But when I manage to get them to snuggle on my lap I have the added worry of dribbling over them. “Fuck! Does it never end?” Writing that just set me off in tears and Laura and Kitty look very concerned. Ro stayed in his iPad bubble and didn’t bat an eye. I explain that Mummy is writing about something that makes her sad but Kitty’s interest wanes and she gets sucked into iPad world too! I am ok about that. It would be worse if they were over concerned. IPad off now and homework begins with resistance! It has to be said that although he didn’t flinch when I cried now, Ro is very affectionate and gives me lots of kisses and hugs.
Heard an interesting quote earlier listening to Wayne Dyer ‘if you change the way you look at things, the things you look at change ‘


Wednesday November 14th


We went to the school parent/teacher meeting last week. It was the first time to meet Ro’s teacher which he’s had for the past two years. So it was a big event and a personal achievement. Luckily we are well supported by the school. My spoken Irish doesn’t translate well on my eye-gaze computer! I have struggled with phonetic translation. So bread ‘aran’ becomes ‘awrawn’ and cheese ‘cais’ shapeshifts into ‘kawsh’! Yes the difficulties associated with an all Irish school when the main Irish speaker in household cant speak! But, as I said, the principal and teachers are hugely supportive, offering help whenever they can so we are both grateful and relieved by that.
Kitty is five today! We had a party at home last year but we chose the stress free option this time. ‘Chuckies’ is an activity centre in Cork, hell for some but wonderland for kids! I will give it a go but will line up an escape car if it all gets too much!
I’ve said before that the ‘secrecretions’ (official word for ‘dribbles’) is one of the most challenging symptoms of this condition. Especially when I am completely dependent on others to mop it up. Recently, sitting outside, a little pal of my kids sat herself down near me. I started dribbling and felt so awful and helpless. That image of myself so desperate and helpless overwhelmed me and the little girl turned away as I began to cry. Poor little thing. Might have done the same when I was her age. Very aware of how I must appear in public “a dribbling non-talking unfortunate somebody”. This image of myself motivates me to write as I want to say ‘but I’m ok on the inside, my spirit is working so well ‘! This brings to mind the prayer I hear through the baby monitor some nights. ‘help mummy to be strong on the inside ‘. The kids refer to me as being ‘weak’. We haven’t called it by its true name and I am happy with that.
To finish something Ro said one time which I love: ‘Mummy is the strongest weak person I know ‘!

Here’s a song I love:


Nearly two thousand readers world wide enjoying my blog! That makes me
feel really happy! So thanks for reading.
Jay and I went on a protest march last Saturday in Cork. The two home-helpers who come every morning to get me up showered and dressed have had their hours axed. Our national health service, the HSE, under this
government have yet again targeted the most vulnerable in our society. My helpers talk about how their clients, mainly elderly, have been
left without any care or assistance, often without even a family
member dropping by. Its a disgrace! ‘Let the sick and elderly off Mr
Kenny! ‘
I am in the category of ‘high dependency’ so hopefully won’t be
touched for now. But I really have sympathy for these amazing women
who have been hit by this outrageous act coming up to Christmas. So,
hence the march on Saturday. Mr Micheal Martin was there talking to my
husband about the unfairness of it all. Always liked this man on a
personal level, taking an interest in L’Arche where Jay works and
supporting me as a mature student in Cork many years ago.
‘Love and comparison are necessities, not luxuries. Without them
humanity cannot survive ‘. Dalai Lama

Magic Halloween night


1november 2012

Last night was halloween so I dressed up as a witch. With green and black stripy tights and a black pointed hat I was up for the craic! My kids went as vampires and armed themselves with huge plastic bags! Jay pushed my chair wearing a muticoloured wig made from shiney plastic paper. We met up with our neighbours along with a band of friends whose kids were dressed as witches, ghosts and every imagined thing. As the goodie bags got fuller, the kids wanted to go further so we ended up in another estate near our own. All the while my feet were turning into ice blocks but nothing could stop me, I was enjoying myself too much! As we looked up at the brilliant moon we saw little orange lanterns gliding around the sky. And the piece de resistance was when the fireworks went off. Such a beautifully coloured sky! It made the night for me and seeing the kids enjoying too was extra great. My smallest, getting cold and over tired at the excitement of it all asked if she could sit on my lap. So I was thrilled to get the chance to snuggle on a freezing cold night. When we got back I was delighted to be able to tell them my wish had come true. I had wished for fireworks!