Friday, 28 November 2014

The Miracle of the Moment

Black Friday. The day when greedy stores pile it high and sell it cheap to people who can’t afford to buy things they don’t really need. If you joined the scrum and managed to get a bargain, that’s great but I can’t help feel sorry for the people who’ve been trampled on, pushed and bullied out of the way. There’s something about this day that’s very unsettling. It brings out the very worst in human nature. It’s consumerism gone mad and quite frankly I was glad to be working and away from it all.

By contrast it seems to me that people with Down’s syndrome bring out the very best in human nature. The simple things in life suddenly become much more important, more tangible, more real.

As I type I’m listening….no that’s not true…. as I type I can hear Emily singing at the top of her voice to the Christmas songs she’s listening to in her headphones. To the discerning vocal coach there may be one or two pitching issues but to me it’s just delightful;  the sweet sound of someone living life to the full. Emily really doesn’t care whether Shakin’ Stevens is able to sing with the same nasal tones that she specialises in. Neither has she the slightest interest whether Boney M can manage to keep to her immaculate timing. She’s belting it out and loving life, right here, right now. A smile draws across my face. It’s such a lovely thing to be reminded of the simple pleasures of life.

I love that about people with Down’s syndrome; the ability to live in the moment. To be totally and completely in the moment. Who cares about tomorrow? Now is where it’s at. And whilst you might say it’s an ignorance of the truth or a failure to acknowledge what’s going on in the world around, I really do think it’s the sweet innocence of life. I wish I could live in that moment. I hope I learn to live in the moment more, rather than worrying what’s happening tomorrow, next week, next month or next year.

That said, I am a much nicer person for having Emily in my life, and for knowing so many other people who have Down’s syndrome, and their fantastic families. To me it doesn’t matter whether I’ve met them in person or chatted through social media, I’ve met some wonderful people who have enriched my life and continue to do so.

As I walked in the city on my way home from work this evening, I was thinking how blessed I am to be part of this amazing local and online global family. I passed a guy busking. He’s there every day rain or shine wearing a red sparkly cowboy hat, tapping a tambourine and singing just as beautifully as Emily. He also has a learning disability. I smiled and thought of a way to bless him at Christmas. Would I have done that before I knew Emily and joined this amazing family? Probably not. That thought alone made every step of a drizzly November evening stroll through the city centre a much better way of spending Black Friday; working out how I can be a blessing to other people.

I also remembered a great song which sums up everything that Black Friday is not; giving something away to help someone else. I receive so much from Emily it’s only right that I give something back, isn’t it?

You can watch the video here.

What if we all just give this Christmas away
If there’s love in your heart, don’t let it stay there
Give this Christmas away
And your life will be changed by the gift you receive
When you give this Christmas away

Maybe, just maybe, the simple pleasures of life are worth far more than anything the shops were selling today. Let's learn to live in the moment.

Emily? She’s now watching I’m a Celebrity… she’s totally in love with Ant & Dec – I think it’s because they’re about her height! Watch out Jono!

Friday, 21 November 2014

The Road to Progress

Once upon a time there were three trolls that lived under a bridge. Their names were Ignorance, Intolerance and Indifference. The three trolls were very stubborn. They refused to let anyone pass over their bridge, knowing that the road to Progress passed through the towns of Education, Awareness, Compassion and Discovery.

The trolls would do anything to stop anyone from travelling along the road. They would use all kinds of tricks – lies dressed up as truth, bigotry dressed up as scientific knowledge and so on and so forth. Often Indifference would invite so many of his friends along to just stand on the bridge, going in neither one direction nor the other, that nobody could actually pass, in fact nobody could see that the road led anywhere at all.

So many times weary travellers would get as far as the bridge, be deceived by the tricks of the three trolls and turn back. Time and again, the same travellers would arrive here, only to be thwarted. Every time their energy decreased. This was the road upon which Motivation had been lost more times than anywhere else. It seemed that one moment the sun was shining but the next there was a thick fog, where any traveller could lose all sense of direction and purpose. Indeed the road to Progress seemed to be a very hard road to navigate.

One day two new friends were travelling along the road and there they met a third standing at a crossroads wondering which way to turn. “Where are you going?” they asked. “I’m not sure” said the third traveller. “I had intended to keep going along the road to Progress but I keep being stopped by Intolerance and Ignorance. Every time I end up back here down the road at Frustration or sometimes I wallow in Discouragement – places I’ve been to many times before.”

“Why don’t you come with us?” they said. “My name is Hope and this is Expectation – what’s your name?”

“Aspiration” said the third traveller. "I really want to get on the road to Progress but just when I get passed Ignorance and I get passed Intolerance, I just can’t overcome Indifference."

“I know what you mean” said Hope. Indifference is the greatest enemy of anyone on the road to Progress. I’ve met so many people along this road and they all say how Ignorance can be challenged and beaten by Understanding, Intolerance can be defeated by the twins Grace and Forgiveness but they all say how hard it is to get beyond Indifference.”

So the three friends set off together – they’d only just met but it seemed like they’d known each other forever. Along the way they met others who joined them on their journey – their names were Encouragement, Strength, Determination, Courage and Tenacity. With every step Love was bonding the travellers together. Hope was shining in each of their eyes. Expectation seemed to have grown beyond all possibility. Determination and Tenacity just kept on going no matter what they encountered. Courage had enough cloaks to cover everyone’s fears. These friends, this army marched on together. Every small step seemed like a leap forward.

As they approached the bridge Aspiration chuckled. He could already see that Future was in the distance on the other side of the bridge, along with Possibility and Potential. Their pace quickened. The friends ran towards the bridge. Ignorance and Intolerance were soon overwhelmed. Indifference and his legion of followers wandered around aimlessly not caring one way or the other where they went. They formed what appeared to be an impregnable barrier. The friends kept bouncing off Indifference and his army. Surely there would be no way to get through. The fight went on and on all day and all night until Determination and Tenacity along with Encouragement and Persistence opened up the way for the friends to storm passed the all of the trolls to the other side.

The battle was won, for now. It wasn’t long Wisdom and Discernment whispered in the ears of Perspective to pass on to the friends that the road to Progress has many bridges, many trolls, many twists and turns and bumps and diversions. Sometimes the climb is so steep you lose your momentum and start to slip back. Sometimes the way is so slippy you lose control.

But as long as the friends moved forward together they knew they could endure and even learn to enjoy the journey on the road to Progress.

Tuesday, 18 November 2014

It's okay for you to cry

I'm not really sure who this is for but I do believe there's somebody out there that needs to hear this right now.

Is it you that needs to hear these words?
It’s okay for you to cry
There’s no need for excuses
Or to tell the reason why
For there’s strength in your weakness
And there’s healing in your tears
Don’t be afraid to open up
And let go of your fears

It’s alright that it’s not alright
The days are long and hard
The nights are never ending
You’re always on your guard
But know my friend you’re not alone
I’m here to hold your hand
When you’re feeling weak and helpless
I’ll give you strength to stand

It’s okay that you’re not feeling brave
There’s courage here for two
When your heart is broken; you’re overwhelmed
I’m always here for you
This season that you’re in will pass
There are brighter days to come
But know for now how much you’re loved

You’re one amazing Mum!

Friday, 14 November 2014

One of those days

What happened to you on Tuesday? How about last Thursday? Or maybe 3 weeks ago? What did you do at the weekend? There are so many days we can’t recall. The I’m-just-getting-through-life-days. Routine. Run of the mill. Soon-forgotten days.

Then there are the days that linger. The days we might always remember. Special days. Exciting days. Terrible days. Days of celebration. Days of grieving. Days memorable for a specific reason, feeling, occasion. Today was one of those days.

It started off quite ordinarily, except that Laura wanted picking up to be taken to the doctor’s so I drove the two miles to her house, picked my way through the melee of cars as mum’s hurried their little ones into school and off we set to the doctor’s surgery.

Now the route took us within a hundred yards or so of our house and as we drove down the lane, through puddles and splashes and driving rain, I noticed a short huddled figure walking with purpose along the footpath. It was a particularly miserable grey day. The kind of day that makes you want to stay home and do some baking or sit down in front of a crackling fire with a good book and a mug of hot chocolate. Dressed in such gloom South Yorkshire does not put on a good show. I’m sure a Friday morning could never look quite so dull and dreary in the south of our green and pleasant land - Morwenstow, Devizes or Upton Snodsbury would turn their noses up at the mere suggestion. No, we seem to have a shade of grey that doesn’t exist on any colour chart anywhere else in the country. But I digress….

“Emily!” I shouted as I tapped Laura several times, “Emily, Emily….it’s Emily” By now Laura was wondering what the heck was going on. She nearly choked on the crumpets she’d sneaked into the car to scoff on the journey. I couldn’t get my words out. “Laura, Emily!” Sure enough, the figure walking up the path at the side of a busy road, was Emily.


All alone.

Emily alone!

There’s nobody with her!


In that moment my world seemed to freeze. My mouth went dry. My heart began to race. We were already 50 yards passed… a hundred. I couldn’t just stop, we were on a busy road with traffic right behind. And I shouldn’t want to stop. This was part of Emily’s travel training. There would be an occupational therapist nearby keeping an eye on her from a distance. Wouldn’t there?

“You’re not used to seeing that are you Dad!” Laura said.

“I’ve NEVER seen that” I replied, “in 22 years I’ve never seen that” and I must confess it was horrible. I dropped Laura at the doctor’s surgery and then drove back to where I knew Emily would be meeting her guide. Nobody there. I drove further and they were already together, on the way to the bus stop. Relief! Phew! Heart still pounding. But such a relief.

You see, Emily is so very capable in so many ways. She’s great at speaking, writing, dancing, singing, acting. She’s also really good at being grumpy, selfish, eating things not good for her and many other things besides. She’s particularly good at forgiving; making the first move to be friends after a fall out. And she can light up a room with a smile.

But she’s never been independent. She’s always been reliant on others. So when we heard of other people with Down’s syndrome having a door key, letting themselves in and out of the house, walking independently, catching a bus and making their own way to school at just 14 years of age we couldn’t quite believe it. I’m sure we’ve probably been part of the problem, limiting her instead of allowing a freedom to discover. But above all I have wanted to ensure that Emily is protected, that’s a natural part of being a parent. Finding the balance between protection and freedom is so hard for any parent with any child, but when the child has a learning disability? Really hard. And yes we’ve probably been over protective. But I’m not going to beat myself up over that!

So this day, Friday 14th November 2014, this day will be a day I shall never forget. This was the day I saw Emily taking her first real steps towards independence. There are many more steps still to come. Many more challenges lay ahead but we shall take one day at a time; we shall meet one challenge at a time. We shall celebrate when things go well and we shall learn lessons when things don’t go quite as we had planned. However, I know that Emily is capable of so much. She has a lot of self-belief and determination. She’s an adult; a woman.

I’m learning just as much as Emily through this and I’ve so much yet to discover. The greatest fear I have is learning to trust and let her go. 

Thursday, 13 November 2014

The Door of Ignorance

It’s so sad when we live our lives refusing to allow others to help us. There are all kinds of reasons why this may be - our upbringing, our culture, perhaps pride or maybe we don’t want to be in anyone’s debt. It’s easier to live in ignorance where there is no responsibility, no accountability, no reason to get up and every excuse you can think of.

However, when we refuse help we only hurt ourselves and our families. Living with someone in our family who has a learning disability can be extremely challenging. We can sometimes sink into a dark pit, a world where we are consumed only by ourselves, our problems, our challenges. Surely nobody else understands, right?

When Opportunity, Education, Hope and Possibility come knocking please open the door. They come in the form of really rather lovely people who would love to see you thrive, flourish and prosper.

Even the darkness in the darkest of rooms is dispelled by the light of one candle. One candle, one knock on the door, one phone call, one friendly chat over the garden fence, one letter from someone who cares, one tweet of encouragement, one kindly Facebook message, one kind word.

There is power in one act of kindness.

So if you are struggling, if you are refusing help, refusing to acknowledge there’s even anything which needs help, open the door. For when we open the door Ignorance will leave as Opportunity, Education, Hope and Possibility enter in.

If you are in a good place and your light is shining bright, take the candle to someone else. Light their room. Let your light shine.

The Door of Ignorance

(Knock, knock, knock) Hello, can anyone hear me?
Can you please switch on the light?
I’ve been locked in here for ages
Are you up this time of night?

(Thud, thud, thud) Hey you, I know you’re listening!
Would you please unlock the door?
I’m tired of feeling helpless
Need to get up off this floor

(Thump, thump, thump) Come on, you can’t ignore me
I’m the voice inside your head
Won’t you listen to what I’m saying?
Won’t you hear the things I’ve said?

(Crash, crash, crash) Yoohoo, I’ll never be silent
So the torment will go on and on
You’ll hear me and still you’ll ignore me
And find others to blame your life on

I’m your friend, I’m your light, I am with you
Your sun will rise with the dawn
There is help, there is hope, there is healing
(tap, tap, tap) Is there anyone home?

Monday, 3 November 2014

Remember, remember....

It's that time of year again when fireworks light up the dark November nights and bonfires are lit to commemorate the foiling of the Gunpowder plot.

Emily always hated fireworks as a youngster. Even from a distance she'd cover her ears and cry. It's quite a stressful experience when you've got two other children who love everything about bonfire night - hot dogs, toffee apples, bonfire toffee, rockets, Catherine wheels, roman candles and sparklers. Not to mention parkin.....Yummm.....(licks lips).


I beg your pardon?

You don't know what parkin is? .....Oh you're not from Yorkshire - Oh I see - I thought there was something wrong with you. Ha! Ok then, well, it's a type of fact let me just give you a quick recipe before I crack on, it probably won't get much better anyway.

100g (4 oz) self raising flour
Pinch of salt
2 teaspoons ground ginger
½ teaspoon ground nutmeg
½ teaspoon mixed spice
75g (3 oz) medium oatmeal
100g (4 oz) golden syrup
50g (2 oz) black treacle
100g (4 oz) butter
100g (4 oz) soft brown sugar
1 egg, beaten
2 dessertspoons milk

You'll need a 20cm (8 in) sqaure cake tin. Preheat the oven to 140 degrees C / 275F / Gas Mark 1.

Sift together the flour, salt, ginger, nutmeg and mixed spice. Mix in the oatmeal.

The golden syrup, black treacle, butter and sugar need to be melted together in a saucpan. Tip: Sit the empty pan on the scales and weigh the syrup and treacle direct in the pan - this saves a lot of sticky transferring later.
Now add the butter and sugar and gently heat just enough to allow the butter to melt, not simmer or boil.

Stir the syrup mix into the dry mix and blend. Add in the egg and milk to create a soft, almost pouring consistency. Pour the mixture into the greased tin (I use greaseproof paper in the bottom - nothing worse than a sticky bottom!).

Bake in the pre-heated oven for 75 minutes until firm in the centre.

Once cooked leave to stand for 30 minutes before turning out. Once cooled the parkin can be served straight away but if stored in an airtight container it will mature with age (unlike me) and for best flavour leave for 3 weeks.

Tip: Ignore the last part and just scoff it right down, 'cos it's gorgeous!

Not sure if this now qualifies me for Best Cookery Blog Award? Maybe not....

(Hang on the phone's ringing.)

It was my mum. Now she must have known I was talking about parkin. She was never any good at parkin, by her own admission. Apple pie, Victoria sponge, various other cakes and pastries - she could always be relied upon for Star Baker. But not parkin. She always had it sagging in the middle..........and nobody likes anything when it's sagging in the middle!

Whatever you're up to this Bonfire Night stay safe and have a great time and if you bake some parkin don't worry if you sag in the middle - all the best people do!

................Ooh, by the way, Emily now loves bonfire night - a little reminder that if you're going through a difficult season, it does change, things do get better - you're doing a great job! The best is yet to come!

Remember, remember the fifth of November
The Gunpowder treason and plot
I know of no reason why Gunpowder treason
Should ever be forgot