Tag Archives: herself

turn, turn, turn

The vibrancy has gone from the green. Leaves are getting ready to fall.

The school preparations are nearly done, although Girl2 will be happier once she has mastered the knotting of the new tie.

The end of August is in sight, but the temperatures are those of later in the year. “Like October” said the weatherman, and nobody was surprised. We’ve all been putting on the heat. People have been spotted out and about in winter coats, scarves and hats. Children are donning the warm things without being told.

On the other hand, I just found the linen trousers I put away carefully for the summer. I’m wearing them. I’m wondering where I put the thermals.

 

on saving my sanity while shoe shopping

It’s an annual trauma. Back to school shoe shopping.

I’m super at internet shopping, or browsing in fancy shops, but I freak out in supermarkets. Too much noise, too many people, specific requirements and too much choice. Exhausting stuff. School shoe shopping has all of that, with the addition of style conscious girls. With strong opinions.

I hardly remember my own school shoes. My feet stopped growing when I was about 13, so it’s entirely possible I had the same pair of shoes for the next 3 or 4 years. Black. Regulation. Styled like a pair of boats. I didn’t mind. I had no interest in or opinion on my appearance. My enormous glasses, frizzy hair- attended to with an ‘afro’ comb- and general lack of concern drove my poor mother mad. Eventually I developed enough interest in clothes to gather a red ra-ra skirt  and white court shoes, but I’m not sure Herself regarded that as much of an improvement. She’d be delighted with her granddaughters caring what they look like.

We had to buy football boots, trainers and black shoes. It was maybe ambitious to try to do all at once, but Spurs Fan is a dedicated shopper and determined to get a bargain or five, so we went to the local outlet centre.

I was defeated straight away by the wall of brightly coloured football boots (what happened?) and moved to the many, many boxes of trainers. It took about 10 minutes to work out that they were labelled with US rather than UK sizes. The reading glasses had to come out. I was fit for the hills before anyone had even tied a lace. All the sizes, all the colours. Twice.

I went for a reviving coffee and wander about. I tried on some unflattering clothes and decided to return to WeightWatchers. I wasn’t just overwhelmed, bored and tired. I was fat too. I wasn’t having a great day.

A preliminary potter round the sensible shoe shop filled my heart with dread. There were loads of sensible flat black shoes to be worn by sensible little old ladies. I wouldn’t wear most of those shoes, never mind expecting the girls to. Being patient souls, they tried, but their faces got longer.

In the midst of it all, I cheered up enormously. It’s not just us. School shoe shopping plagues all the houses. Children the world over make their opinions known. We’d have another go.

The magic moment came courtesy of Tinman. His post about a teenage daughter and school shoes popped into my head just when I needed to smile. He tells tales that make me laugh, and pluck at my heart. This one saved my sanity that day.

there's more!
there’s more!

We still have to buy a pair of school shoes.

preparation for student life

I lived in a small town in the west. We had fields behind, a lake in front, lakes all around. Far enough from the border for it not to loom, close enough for it to be an everyday reality. Regular life in Northern Ireland in 1982.

But changes were ahead. I was planning on going to university. I didn’t know any students. Past pupils from my school came home at Christmas, smug and worldly wise, too busy being grown up to discuss their new lives.

I’d intended to go to England, but wasn’t brave enough to head away into the world on my own. Belfast was far enough.  I’d never stayed there overnight. Belfast was scary, but at least my accent would be understood there, and I could go home anytime I wanted. Small steps.

We all prepared for my student life together: Herself, the Old Man, the Brother and I learned everything we needed to know from TV. We laughed and winced and cringed and learned a whole new vernacular.

 

Rik Mayall died yesterday. Thank you, Rik for all the family fun.*

 

*not “family friendly”

connections

When I talk about rare disease issues, I always give a bit of personal context. The issues I raise and the reflections I make are only effective because they’re based in the family’s experience. Me pretending to be a confident lecturer only works because I spent the time being lost and bewildered, battling for, and with, Herself. I start with a picture of my mum, looking happy and well at The Brother’s wedding (the crutches are hidden- the progression was underway but we didn’t know it).

I talk about all the things we learned- the limits of medical expertise, wheelchairs, therapists, the dread of a late night phone call.

But we also learned about the power of someone saying “I know about PSP. I can
help.” A connection. Someone who understood the issues, and who walked with us.
We learned the power of asking questions, and of being asked.

I show a slide of two Edwardian ladies, walking sensibly side by side. They have hats and gloves and look like they are good living. Just like their real life counterparts…

driven to drink

We all need support. It’s important that we work together, that we build on each other’s learning and experience.

I have made real live actual friends through blogging. The bloggy buddies I’ve met, I feel like I’ve known for ever. Most of you I may never meet, but we connect, we are friends. I was delighted when Debra from breathelighter contacted me last week. She’d come across a film, thought about rare diseases, thought about me. How cool is that?

The film has it all- cute child, rare disease, a wonderful dog, love, friendship. The power of connection. The importance of having someone to walk along side, to share the load. Love. Be prepared to sniffle when you watch it.

http://www.viralviralvideos.com/2014/02/17/a-boy-and-his-dog-short-film-will-melt-your-heart/

Everybody deserves that connection. Let’s do what we can to support each other, to ensure that we all get that chance. Edwardian hats and gloves are optional. Blue drinks may be compulsory.

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