Wednesday, October 29, 2014

A very special 18th birthday

My little miracle baby is all grown up, she's made it, she's beaten the odds and become a gorgeous healthy special young woman.  I can't help but remember how it all began, with that fateful trip through the dim corridors of the hospital, when I was told I had a 70% chance of delivering a live baby.  And all those people who told us to baptise her in the hospital, "just in case".  I always believed in her, I never doubted that she would survive and thrive, and so she has.

Before Smiley I would've run a mile at the idea if being a mum to a child with severe disabilities, but now I cannot imagine life without her.  Ever.

You can lose yourself in the innocent joy in her beautiful eyes, and her infectious excitement.  When she smiles, you can feel it from the other side of a room, and you just have to turn and smile back.  All she wants is love and attention, and she repays every bit with interest and more.  Even when she's naughty, she does it with so much charm and delight that you have to smile with her.

It's not always been easy: The first 2 years were a blur of fear and appointments and diagnoses and medical equipment and learning a new language and a new way of living.   I remember sitting crying helplessly on the sofa when she was disinterested in yet another project I had worked so hard to prepare to help her progress.  Wondering what I was doing wrong.  When the news about her got worse and worse, when it became clear that she would not walk or talk as other children do.  When I realised that she would need 24/7 care for the rest of her life.  When she was kicked out of school and put in a day centre with no teachers.  When I had to stop lifting her and face the fact that she was no longer a cute overgrown toddler, but a severely disabled teenager and I was her carer.  And there are still times when I cry: in the middle of the night when I can't work out what's wrong, in the day when I can't find something to entertain her, when I try so hard, and she just wants to watch the same YouTube clip over and over again.

But she has taught me so much about the value of every human life, and how every child can thrive with love and support, and I want to say huge thank you to everyone who has supported her and me over the years.  I couldn't have done it without you.

Today will be very special.  She has piles of presents, which we will be opening for days.  But the one I want most of all?  A really good adult service for when she leaves school next summer.  Only the best for my Smiley xxxx

Note: Smiley's story begins here and there's more links to posts about her here too

Monday, October 27, 2014

In memory of Dylan Thomas

Welsh poet and writer Dylan Thomas was born one hundred years ago today, but I wonder have my children even heard of him.  I'm not actually a big reader of poetry, but Dylan was different.  His words really got under my skin, and scratched those raw places in my psyche like nothing else could.

It was a family thing too: my third name was given in memory of his wife, and I have inherited a well-thumbed copy of Under Milk Wood that I always read aloud in a really bad Welsh accent.

Then I lost my Dad in November 2011, and that sent me hurtling straight back into Dylan's embrace once again.  No-one for me has ever captured so well those overwhelming feelings of anger and grief at the loss of a loved one.  Surely there cannot be anyone who has not read this, but just in case, here it is...

Do not go gentle into that good night, 
Old age should burn and rave at close of day; 
Rage, rage against the dying of the light. 

Though wise men at their end know dark is right, 
Because their words had forked no lightning they 
Do not go gentle into that good night.

Good men, the last wave by, crying how bright 
Their frail deeds might have danced in a green bay, 
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight, 
And learn, too late, they grieved it on its way, 
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight 
Blind eyes could blaze like meteors and be gay, 
Rage, rage against the dying of the light.

And you, my father, there on the sad height, 
Curse, bless, me now with your fierce tears, I pray. 
Do not go gentle into that good night. 
Rage, rage against the dying of the light.

This week also marks the seventh anniversary of the passing of my lovely mum. Impossible to believe that it has been so long xx

Sunday, October 26, 2014

Gone Girl Gone: A Guest Review of the Mia Tui Minnie Amelie Bag

Something different today: a dear friend and published author, Patricia McAdoo, has written a review in her unique style of one of my favourite bags: the Minnie Amelie from Mia Tui.

Gone Girl Gone

Once upon a time there was a very muddled girl. Whenever she had to do the early morning school run, she would rush bleary eyed through the house wailing, ‘Where the hell are my car keys gone?’ And if anyone tried to help by asking where she might have left them, she would snap ‘I don’t know do I? They’re just gone!’

When she reached the top of a busy supermarket queue, she invariably dived red faced into her bag as people behind her shuffled from foot to foot and the checkout guy tapped his fingers on the till. She would smile a faint smile and mutter: ‘I just know my card’s here somewhere but it seems to be gone!

At an important work meeting her phone would suddenly and shrilly ring and of course she would then have to extract her make up bag, car keys (they always appeared whenever she didn’t actually need them), hundreds of shriveled receipts and sad little tissues in front of the entire senior management team. ‘I’m sorry.’ She would stutter as they stared at the pitiful contents of her life. ‘My phone’s obviously in here somewhere but I don’t know where it’s gone!’

And then one day everything changed. She got a present of an Minnie Amelie Mia Tui bag from her worn out family. She carefully transferred her makeup to the makeup bag and her phone to the phone holder. She placed her car keys on the clip for keys and her wallet in the mini bag. She even put a bottle of water in for her next meeting and all her clean tissues in the other clear bag.

Then she went out to conquer the world which of course she did because for the first time in her life everything was exactly where she expected it to be. She got the kids to school in the morning on time and without any hitches. She sailed through meetings with her phone dutifully on silent and, because she was more organised, everything in her frantic mixed up life became a lot easier to manage.

The only tiny glitch was a recurrent nightmare she began to have that one day she might actually lose her Mia Tui bag and get catapulted straight back to being ‘Gone girl’ again. So, just in case that ever happened, she quietly invested in a backup Mia Tui bag and wrote down the place where she had put it and put the note on the kitchen noticeboard and promptly stopped having the nightmare.

And so now when she finds herself in a supermarket queue behind a red faced woman rummaging in vain for her credit card, she smiles at her (with only the slightest hint of smugness) and takes her bottle of cooled water from the insulated water container in her bag and her notebook for project ideas from the front pocket of her Mia Tui bag (she’s always thinking of ideas now her mind isn’t so frazzled) and settles in for a long wait.

Patricia McAdoo is currently finishing her latest novel and I'm really looking forward to reading it.  Click here for her website and blog.

Mia Tui and Me

I was never a bag lady, just a one-bag woman.  I couldn't deal with the hassle of matching them to the outfit of the day and then making sure I had everything in the chosen bag. Of course that meant that my one and only had to be absolutely perfect, and shopping for a new one was always a nightmare.

And then I found Mia Tui, thanks to the lovely Lisa Maree Domican.  I began with a Grace bag, and gradually collected more, because it's so easy to move the contents from one bag to another with the Mia Tui system.  I'm now completely obsessed and have all the bags that I could possibly need, so when Mia Tui offered me a free one to review, I naturally offered it to the first friend who expressed an interest.

And here is the obligatory interior shot of my current everyday bag (a Matilda Mae) and it really does look like this all the time.


Mia Tui provided a Minnie Amelie for review, which I gave to Patricia.  Her views are her own.

The Facts Bit

Mia Tui bags were launched in 2010 by busy working Mum Charlotte, as a result of being unable to find a bag to meet her needs.  The collection ranges from small cross body bags to weekend bags and prices start at just £10. They have won many awards and are available to purchase on-line from the website

Friday, October 24, 2014

Top 5 films on Netflix

I may have mentioned that Netflix kindly gave this family the opportunity to watch whatever we like for a year for free, giving me a whole new subject to blog about too.  This month I'm writing about my top five films on Netflix, and linking up Kate Takes Five's Listography on the same theme.  No it's not a coincidence.  Like I said, I'm blogging for fun right now, so there may be more of this.

Of course I could have just picked five films and checked out Wiki, but I'm more dedicated than that.  Films have been watched while cleaning the kitchen, and waiting for certain children to fall asleep, as well in front of the fire with a large glass of wine!  Really, it's been no trouble at all.

Normally it's not easy to see an entire film in this house, all the interruptions just make me lose the will to watch.  Hence my regular trips to the cinema with Angel.  The advantage of watching films on Netflix for me is that I can easily stop them whenever someone wants me.  With Freesat you don't get one of those fancy pause live TV buttons.

So here's my Top Five, in no particular order.  My friends will notice that I've deliberately excluded all Lord of The Rings related films, cos you just know they'd monopolise the list otherwise:

Winter's Bone

Yes I was one of those annoying people who adored Winter's Bone before anyone had ever heard of The Hunger Games.

I loved the brooding atmosphere and the real people and the portrayal of their difficult lives and where that can lead.  Not so different from other American Indie Films that I've enjoyed, such as Little Miss Sunshine and Sherrybaby.

Pretty in Pink

Classic nostalgia for me, and I love the way that the quirky girl gets the gorgeous guy in this film, and, well, everything else about it too.  Now I just need to convert my daughter...


A spy thriller filmed on location in France with a galaxy of great actors including Jean Reno, Robert de Niro and Sean Bean.  What's not to like?

How I Live Now

Based on the novel of the same name by Meg Rosoff which I also loved, this is another dark film in some ways, of young lives changed forever, but it's lifted by gorgeous scenery and acting.  


The film that grew out of the American TV series Firefly, that was cancelled far too soon.  Who knew that you could mix Westerns and Sci Fi with such amazing results?  Throw in an outlaw spaceship captain with a motley crew of misfits and you have the makings of a cult.

Yet again my picks are mostly about the underdog trying to make it in an unfair universe.  I'm sure that says something about me!

Thursday, October 23, 2014

A lot about friends

It's the start of a very busy and important week here, and hopefully I will have lots of wonderful reasons to be cheerful to report back next week.  But we're not there yet, so I've scratched around and found a few for today:

  • I got my ears syringed.  It's only taken me about 5 months, but I'm hoping that it will solve a weird problem that I've been having with my ears. 
  • Some very special visitors will be arriving soon.  I can't wait to see them, the kids are looking forward to their arrival too, and it will be an excuse to get out and have a mini staycation for a few days.   And they've told me to get my DIY list written up so they can tackle a few jobs while they're here.  What could be better?
  • Both teenagers have been to school every day so far this week, so my life is back on track for now.
  • My severely disabled daughter was given Botox in her tight leg muscles a couple of weeks ago.   Until this week I didn't see any improvements, but for the last two nights she's slept in her sleep system.  Not only does this help prevent further damage, but she tends to sleep through as well, which is good for both of us.

Over at Striking Mums, Kate is asking questions about labels this week...

1. If I gave you a label and pinned it to you and you were allowed to put just 3 words on it, which would you choose?

Probably "Don't", "Label", and "Me".

2. What labels that others have used about you do you think are spot on?

I've been called many things in my life but the most memorable are probably these:

Inspirational Mum
Loyal Friend

They all describe different versions of me at different times, but I prefer the ones that stick as a result of my efforts, not because I have just done my job.  So I don't think that adjectives such as inspirational apply at all.  But others do for some reason!

3. Has having a particular label ever got you into trouble or held you back?

All the labels applied to me as a gawky teenager certainly affected my self esteem very badly.  Who knows how my life might have panned out if I still had my childish confidence?  Later a well known Irish Newspaper columnist told me in front of others that I was "not a proper writer".   Presumably because I was not a journalist on a well-known title, even though I did own an NUJ card.  But it still made me doubt myself once again.

4. Does or did one of your labels mark you out as very different from others in your circles?

Being called flamboyant: Until recently, I was often the one in my circle with the most striking make up and clothes.  Sometimes it's very noticeable indeed on old photos!  Back to camouflage again, allowing me to get into character and be the person I wanted to be.

5. Which label are you particularly proud of?

Excluding the whole Mum thing, which is the obvious answer, I would say that I would be most proud of being a loyal friend, partly because my friends are so important to me.  And the reason why would be a whole post in itself.

Click on the logos below for more posts

Ojos World

Kate on thin Ice Striking Mums

Wednesday, October 22, 2014

The future, imagined

It's funny the things that happen on-line, the people you meet and connect with.  People who have the same interests as you, something I never thought possible: I used to keep really quiet about being an adult who watched Dr Who and read The Lord of the Rings, but I don't have to do that any more.  There are also so many people whose politics I like, who worry about the present and think about the future.  And who, like me, have always read books that imagine how our future could look, even though it's usually bleak.

Now that's gone mainstream.  Between Divergent, The Hunger Games and numerous TV series, dystopian futures are having their moment in the sun.  So I got all excited when Jax at Liveotherwise blogged about dystopian fiction, and what was planned as a long comment on her post, grew into something else.

You see books like these are woven into the fabric of my childhood.  There was a bookcase of Penguin classics in our sunny dining room in Wales that I would raid whenever I ran out of library books, which happened a lot.  My Mum would find me hours later curled up in a chair or perched on the branch of a tree entranced by another tale by Nevil Shute or Graham Greene or George Orwell or John Wyndham.  I read them all, and many more.

Some of them wrote about the seedier side of life in the 20th century and some of them imagined a scary future.  These are the ones that I remember most clearly:

1984 and Brave New World.  Everyone knows them, or believes they do, but how often do we stop and think about how they have affected the world around us?  I know that the idea of Big Brother has affected my concerns about privacy.  Or 'obsession' according to my eldest daughter!  Remembering Room 101 means that I won't reveal my deepest darkest fears to anyone.  Just in case.  Whenever I see another reality TV show I think of Brave New World and opiates for the masses.  And I'm guilty of it too.  At the end of another stressful day, I plump for entertainment over education every time.

I found The Handmaids Tale by Margaret Atwood is uncomfortable read but it sticks in my mind and I see echoes of the imagined regime all around us in the increasing control over women in so many societies.  It must have seeped into my subconscious as I've been told it also inspired my fear of losing cash as a currency.

I barely remember The Dispossessed by Ursula K Le Guin, and it wasn't an easy read, but its exploration of the principles of anarchy certainly made me think.

A book that I've mentioned before because it was totally unforgettable is The Ice People by Maggie Gee.  Set in a frozen future where relations between men and women have also broken down, it is both terrifying and funny.  It also reminds me of why both men and women need each other, despite our differences!

And a couple of cheats:

The grandaddy of all dystopian fiction is We by Eugene Zamiatin as recommended here by my friend Kathleen at AutismHerd.  I haven't yet read it, but it's now in the queue on my Kindle App.

Peeking out in the photo above is another book that had a profound effect on me: Nickel and Dimed by Barbara Ehrenreich.  It's not about a dystopian future, it's about life in the US now.  Life when you are poorly paid, have no job security and no healthcare.  It's about people with untreated medical needs, people who work 3 jobs to eat, people who live in cars, and no-one cares.  And now we're seeing it in Europe too.

You could get very depressed after reading all these books, but I choose to see the hope in them, that while there is no such thing as a perfect society or government, there will always be people trying to make things better, always be the hope that things can change, no matter how dystopian the world becomes.

Saturday, October 18, 2014

Unpredictability and Style

I've decided that September is my favourite month of the year.  It's a time for new beginnings and good intentions.  Family life here is unusual at the best of times, but in September at least it was blissfully predictable.  That gave me head space, to do things for me, time to think, solve problems, get things done.  But now unpredictability has crept in again, and every morning I wake up not knowing what the day will bring, or what plans will have to be changed or adjusted.  This is when working on my reasons to be cheerful becomes more important than ever.  And I have a big one for this week!

Road Trip

Really, is there anything better than a road trip during school hours to lift the mood?  Especially when unpredictability meant that it had to be cancelled last week...

So yesterday, as soon as the school buses departed, I headed for Newry with my "sister", as the Sainsbury's check out operator described her.  It's a long time since anyone suggested that I had a sister.  Sadly she isn't, but she is a very good friend and fellow special need mum - we share the same hairstyle but have different accents!

These days Newry is a relaxing place to visit, and some of my overwhelm is gone now that I have most of the birthday, Halloween and Christmas shopping done.  The relief is fantastic.

I came home totally energised, and managed to sort out the teenagers, take in the Tesco delivery, put on a wash, clean the living room and hide all the loot before sitting down with my laptop at 6.

Productive days and happy children are a great start to the weekend.  And there was a bottle of (cheap Northern) wine chilling in the fridge too.

Click on the badge for more reasons to be cheerful hosted this month by Jo at Ojo's World.

Ojos World

Striking Mums

Style is the topic for the Striking Mums this week and how it changes after children.  In many ways that's hard for me as my style would surely have changed in the past 22 years whether I had children or not.  But looking back at photos of me in my 20s, the main difference now is that I wear longer sleeves and hemlines.

Kate on thin Ice Striking Mums

Here are this week's questions that Kate has set on style:

1. Would you describe yourself as stylish? Has your answer to that question changed since becoming a mum?

I am certainly not stylish like a yummy mummy.  Looking down at my jeans, runners and purple T-shirt, my style is more like that of a very mature student.  And I guess it always has been.

Chrissie Hynde was my style icon: I aspired to her "Don't mess with me" look, but often got side tracked.  The black eyeliner though has become an everyday staple, but I couldn't wear anything like black leather to my job in PR.  There I was expected to present a very polished front (not easy for a young Mum!) and I often got it wrong, and still wonder why there are no gentlewomen's outfitters where you could get kitted out office-style, from head to toe.

So my style is comfort and camouflage: comfort to see me through the days, and a camouflage that presents the person I would like to be to the world.

2. Describe a stylish outfit you wear/wore and loved.

That's easy.  There was this little hippy shop in Hereford near where I grew up.  You know the kind.  It sold incense sticks, silver earrings and little beaded purses.  And a few clothes too.  It was there that I found my "thin" dress:  black velvet, slim, over the knee, long sleeves, with a cut out back partly obscured by a big floppy bow.  It was almost impossible to dance in and you had to walk very slowly in it, but I enjoyed every second of wearing it, and my daughter did after me too.

3. How important is it to have an individual sense of style as mum?

That is an individual choice.  But keeping some sense of individual style may help balance the loss of  self-esteem that many women suffer through the demands of motherhood.

4. Are you ever embarrassed about how you look when you are out and about?

Not usually, but there was one memorable night when I had arranged to go to the cinema with my stylish eldest daughter, and I just threw on some runners and an old coat as I'd no time to get changed. She totally cringed and I never made that mistake again.

5. Do you judge people by the clothes they are wearing? Do you feel judged?

I hope that I don't judge people by what they wear, but when you meet someone for the first time it's almost impossible not to look at their style and make assumptions about them, based on their appearance.  When you meet a friend, you may try to work out their mood based on what they are wearing.  Don't they say that we dress for how we feel?  I know I do.  Bright clothes when I'm feeling confident and happy, black when I'm not.

6. Does having a sense of style all of your own help with self-confidence?

Absolutely, see above!

7.. A challenge – put together an Autumn outfit and post a picture of you in it on your blog. If that is too much, you could just photograph the items in the outfit. You can use things you already have or throw caution to the wind and go on a shopping spree.

I tried to take a night time selfie in yesterday's outfit, with a flash where my head should have been.  But I really don't think that you want to see it.  There are a couple of autumn outfits on this post.  And  the little blue number?  I love it nearly as much as my "thin" dress.