All posts by speccy

and off she goes

The garments are labelled. The tie is tied. The blazer feels itchy on her neck.

My little one is off to big school, with butterflies in her tummy and her shoulders tensed up to her ears.

Girl2, school uniform

Nobody else from her primary school is going to the same school, but that is not a concern. Thanks to dancing and sport and the miracles of social media (“I’ve got a new friend who’s going to my school tomorrow too”), she knows loads of people. By now she’ll be getting to know her new class, her form teacher and the ways of the new world. By home time she’ll be exhausted but buzzy. A restorative cookie is planned.

Girl1 is almost as excited. She has shared many words of wisdom (“Don’t bring your school bag into the dining room.”, “Do your homework the day you get it.” I’m still smiling at the latter…) but will probably not acknowledge her sister when through the school doors, or on the bus. She doesn’t start back until tomorrow, so made sure to lift Jake up to the window for waving this morning. A dog’s life, indeed.

And so the world moves on, full of fun and learning and friendship. We’d not want it any other way.

don’t think about the darkness

Thinking about things makes them real.

Thinking about things gives them power.

Thinking about things means they don’t go away.



The darkness is there. It’s just out of the corner of my eye. It’s not in focus, it’s not dominant, but I know it’s there, convincing me that contentment is fleeting.

Creeping closer.

Lapping at my feet.

Grasping at my ankles.

Shadowing me.

I’m fed up with people. I want to be on my own, with no expectations, no need to be civil. I want to stay in bed and sleep for weeks on end.

I want to light the fire and stay beside it until the spring.

I know that these strategies would be profoundly counterproductive. Wallowing is not helpful, but sometimes it’s the only thing.

sunshine, sea, air

I will continue to read and spend time by the sea. I will walk more.

I will talk about it.

Talking puts things in perspective.

Talking means I have to deal with it.



the soft furnishing explosion

Last weekend involved cleaning and sorting and arranging. And rearranging. Then, after a little while, arranging all over again.

We moved into the new-to-us caravan without too much bother. A few car loads of crockery, bedding and beach things, and we were pretty much sorted. The orange was largely hidden, while many curtains and pelmets were dumped. I kept finding grub when I thought all was clean, but it was probably no worse than the house is.

It appears that moving is a remarkably sociable activity. Men appeared with tool boxes and/or dogs to share the excitement of moving a swirly washing line or fitting a satellite dish. Temporarily, we provided a man shed.

That wasn’t going to last- I had throws and cushions to sort. IKEA may not have many cheap cream throws left. Girls made up all the beds and organised blankets like they’d done all this before. Then they played twister on the new rug.

caravan seats, cushions, throws, IKEA

We have more space, warmth and neutral fittings. We have fewer passers by.

We have views. All the views. When I manage to take pictures that do the scenery justice, I’ll share them. Imagine hills, fields, forest, sea and four counties. We’re in the middle of nowhere, but on a clear day we can see to everywhere.

I live in the city, but I’m not of the city. I need the space to breathe, play board games, and watch a small dog deal with joy of forest-y animal-y smells.

ice buckets and forgotten people

Are you bored by the ice bucket thing yet? There’s such a lot of it about. Celebs and randomers getting wet just to make a video and announce to the world that they’re making a donation to charity. Needless, tasteless and narcissistic.

Except… it’s not any of those things.

It’s fantastic.

Until a few weeks ago, how many people were chatting about Motor Neurone Disease (ALS)? How many people were interested in rare disease? Or neuromuscular conditions? How many people were struggling to raise awareness, interest and funds for research, treatments and support?

Often compared to the #nomakeupselfie as a social media notion that went mainstream and raised  much money for cancer charities, the impact of #icebucketchallenge could be much greater. It’s an opportunity for money to go to charities and conditions that are not so well known, and not generally funded. Today the ALS Association announced that they’ve received $68 MILLION more this month than in the whole of last year. Incredible stuff, impacting on often forgotten people.

One in 17 people in Europe is affected by a rare disease. You know more than 17 people.

In Northern Ireland, over 100, 000 people are affected, roughly equivalent to a population the size of Derry/ Londonderry. Because there are over 5,000 rare diseases, numbers affected by any particular condition are small, but collectively rare disease is common. We need to take opportunities, we need to work together. That’s why we created the Northern Ireland Rare Disease Partnership (NIRDP). That’s why we volunteer hours to build relationships, to raise awareness, to support each other.

Tomorrow evening, Belfast Lord Mayor Nichola Mallon will be helping medal winning boxer Michael Conlon complete #icebucketchallenge for the Motor Neurone Disease Association. We’ll be there, cheering them on.

We know what’s it’s like. Girl1 and Girl2 stuck their feet in a basin of iced water. They were drenched by iced water. They know why the water was iced- it’s not about the fun, but the loss of sensation. They know that the shock and helplessness they experienced was temporary and therefore fun. They know it wasn’t like that for their grandmother, Herself. They know the impact of a rare neurological condition. They remember how a vibrant, busy, fiercely independent woman became bedbound, unable to do anything for herself and barely able to communicate. We all remember. So a bit of cold water is nothing to us.


Girl1 ice bucket challenge, NIRDP, PSPAJake

No ice for Jake – we’re not that mean!