Thursday, 26 March 2015

A Pinch of Salt....

Remember that “song” Everybody’s Free (to wear sunscreen) by Baz Luhrmann? I only remembered it after I started to type something, a kind of advice to my younger self. Anyway, this is not me trying recreate something that’s been done before, it’s simply me giving myself a bit of a talking to, whether it’s to my younger self, my older self or me as I am now.


First things first, you need to understand that everyone’s got an opinion and advice. Some keep it to themselves, some carefully discharge it with wisdom and others blurt it out indiscriminately whether it’s any of their business or not. Take it all with a pinch (or a bucketful) of salt. Be careful who you share your opinion with and how you do it.

There are some things you should know.
There are some things you don’t need to know.
Learn to discern which is which and act accordingly.

As sure as the sun rises in the east, other people will let you down - don’t let them get you down but do get up to see the newness of the sunrise.
As sure as the sun sets in the west, you will let yourself down – learn to build yourself back up and remember to enjoy the beauty of the sunset.

Dare to wander barefoot into the meadow of your imagination. Tread softly, gently, sit awhile and discover the beauty that exists in endless possibility.

Be courageous
Be polite
Be courteous
Be brave

Be loyal - when all else is gone loyalty will mean you are not standing alone. Your credibility and integrity matter more than anything else. When IT is gone you are in trouble.
Stay out of trouble.

Don’t allow feelings to stop you doing the right thing. Feelings come and go. Your conscience will always be with you.

Understand that true friendship is more valuable than a huge house, a full bank account or any other material treasure. Your friends are precious; cherish them.

Life is precious; cherish it.
Forgiveness is vital; hold on to it.
Regret will eat you up – let it go.

Live a life which brings peace of mind. If you don’t have that you will forever be tormented by what if’s and maybe’s.

Spend time gazing at the stars. The universe is huge, you are tiny in comparison. Allow your breath to be taken away by a shooting star and the beauty of creation.

Allow your heart to be broken – you will retain a tenderness which allows you to love again.
Bitterness callouses the heart and poisons your thoughts.

Take risks.
Exercise.
Eat well.
Dream.
Always have a dream big enough to grow into.

Allow your passion to show others what you believe and what you stand for.

Believe in yourself.
Stand up for others.

Colour outside the lines. Do not be constrained by the expectations of other people. Express yourself freely as only you can. You are unique.

Understand that there are many viewpoints. Just because you can’t see it, doesn’t mean someone else can’t. A church tower has four sides; if there’s one person looking at it from each side you will all see a different clock face but you’re all looking at the same church and the same tower. Life is not always quite the way you see it.

Be an educator. The greatest threat to an inclusive society is ignorance. Educate the ignorant with words of love not condemnation. You will win others over to your side more quickly if you treat them with respect. Do not use words of hate. You are not judge, juror and executioner, even if sometimes it would feel better if you were.

Write. Poems, songs, prose. Just write.

Walking away is not a sign of weakness. Sometimes the bravest action is to walk away even if it appears to be in defeat. Living to fight another day when you are stronger is more important than fighting with no energy. Learn to pick which battles need fighting today.

You don’t need to explain yourself.
Don’t ask others to explain themselves.

Look after your teeth.
Look after your heart.

Forgive others
Forgive yourself.

Hold on to memories which make you smile.
Let go of memories which make you wince.

Travel to far off places and broaden your horizons.
Stay close to those who love you. Do not treat them with contempt or take them for granted. Invest your time in those who care about you and those you care about.

Smile. It encourages those who love you. It confuses those who dislike you.

Laugh. Every day. Laugh long and laugh loudly.

Sing. Sing the song of your heart. Sing in the shower. Sing in the bath. Sing in the kitchen and the lounge. Sing in church. Sing in the car. Sing in the street. Sing in the mountains. Sing in then valleys. Sing in the forests. Sing in the deserts. Even when there are no words; sing.

Cry. Allow your tears to bring healing to your wounds. Welcome them; do not despise them. You cannot make the past disappear but with every teardrop you get stronger and one day you will be glad for those tears.

There is beauty in brokenness. If you never hurt, you never truly love...


….and finally listen to the advice you give yourself. But remember…if you listen to this, take it all with a pinch of salt….


Monday, 16 March 2015

It's all about Evie...

I thought it would be a great start to Down’s Syndrome Awareness Week by having a guest post from another parent. So I asked Kirsty to write something about her beautiful daughter Evie and here it is!

****STOP PRESS****

The great news is that Kirsty has now joined the world of blogging so you can follow Evie’s journey at www.itsallaboutevie.wordpress.com so please give her your support!



Hi. Thanks to Paul for asking me to takeover, I mean guest blog. ;)

I’ll introduce myself, I’m Kirsty and I have the most gorgeous six year old daughter called Evie. Evie is our eldest daughter and the absolute centre of our world. Evie also happens to have an extra copy of chromosome 21, more commonly known as Down’s Syndrome.



For Down’s Syndrome Awareness Week, in the lead up to the great Lots of Socks Day, I’ve been thinking about what Down’s Syndrome means to me. Is it about scary hospital appointments and learning a new language surrounding learning disabilities? Is it about being fearful of the future? No, it’s this…

Evie has opened my eyes. She is so in tune with her feelings. If she wants to lie in a puddle she will, if she doesn't feel like walking - she won't, if she wants your chocolate biscuit, then it's hers. It's refreshing (and often infuriating when I want that biscuit). There is no hidden agenda. Evie takes life and she shakes it up. She makes you question your values. She is honest to the core. What's not to love about that? 

Finding out that Evie had Down's Syndrome was terrifying. I admit that we were beyond scared. We knew NOTHING expect the crap you see on the tv. I didn't think that her life would be fulfilling. I have never been so wrong in my life.

I've heard other parents say that it was never an issue for them, when their children were diagnosed. I can't say that and to be honest, I can't quite believe them either. I was afraid. Mainly of myself and what others would think. Thanks to Evie, I really don't care what Joe Bloggs on the street thinks about us.

What I do care about is that our society seems to think that it is ok to belittle those who are different. Whether it be Down’s Syndrome, Autism, Cerebral Palsy, microcephaly, Turner’s Syndrome, if their sexual orientation is different to what that person thinks that it ought to be, if their skin colour is different, if they are female or male. Why do we treat each other this way? Who gives us the right to judge and mock? To have one-upmanship over others?

Different is good. If we were all the same, it would be a very boring world. Variety truly is the spice of life. I’ve asked my friends and family to help.  I want them to back us and people like us; to help us promote the worth of our families, the fact that actually having any disability or any difference shouldn't matter. You shouldn't look or stare or judge. It could just as easily be you. In our case what is an extra chromosome between friends? Join us. Together society can change.






Saturday, 14 March 2015

Mum

Who, here on earth, could possibly compare to a mum caring for her children?
She is the most revered of women
She deserves a place of honour in her household
And a place of respect in her community

She has no concept of what it means for her hands to be idle
Her thoughts are forever on tomorrow’s diary, packed lunches, appointments
She is forever planning, creating, preparing
Always thinking, watching, caring

She is worth more than diamonds, emeralds, sapphires and gold
More beautiful than a golden sunset in the western sky
More determined than any Atlantic wave that crossed the ocean to pound the Cornish shore
More gentle than a feather floating on the wind

There is nothing she would not do to get the best for her children
And for this she pays a heavy cost
She is tired, she is weary; she gets angry and frustrated
She is easily bruised but she is never beaten – ever!

This mum is the very cornerstone of society; a hero, a pillar, a rock
She deserves far more than she receives, yet still gives, gives, gives
In return for her toil she receives a grateful smile
And her heart melts

Thank God for the mum caring for her children
She lives on through every generation
Her influence, her life, her love always close

She is near, she is dear, she is you…




Sunday, 15 February 2015

Sacrifice

You just couldn’t help but notice that this weekend was Valentine’s Day. Everywhere you looked there were images in pink and red, of hearts and flowers, chocolates and champagne, teddy bears and those cuddly wuddly fluffy words each screaming out the message “I love you!”


(Shame my postman appeared to be on strike….again!!!)

For thousands of years the most articulate of wordsmiths have tried to sum up love in prose, poetry and song lyrics. In fact there are so many songs dedicated to love it is surely obvious we can define it more accurately than anything else on the planet. Right? Well I’m not so sure.

Remember the ‘80s song “I wanna know what love is” by Foreigner? Course you don’t, you're way too young. They could have looked in all the shops and found their answer surely. But I’m convinced that love is more than the feeling we associate with all that we see in the shop windows during the first half of February. In fact it’s probably not simply just a feeling at all (though in part it obviously is). Instead love is something which is not dependent upon our feelings but more on our experiences, our attitude and response.

Now let me get this clear, I am no expert in the mysteries of love; far from it. Indeed, when it comes to the sweet, sticky, sugar-coated love associated with Valentine’s Day I confess to being as one without credibility or expertise and I get it wrong more often than not. However, I have a completely different love in mind. A love which is lasting, a love which has foundations built upon something stronger than a bottle of bubbly and a box of Ferrero Rocher!

Having children changes your perception of love. Having a child with special needs takes it to the next level - not that I love Emily any more or any less than my other children. However, there are certain lessons of life which are learned when you have a child with special needs which we don’t necessarily learn with our other children.

The journey towards learning these lessons and the love which accompanies our journey will look different for each and every one of us, so I don’t presume that everyone will have the same experience as me. However, there may well be echoes of a truth which resonate.

Love is often forged in the furnace of frustration, in disappointment and anguish which we feel from time to time. It is shaped by the hammer blows of rejection by people we might have regarded as friends and by the society we thought was accepting but who we found to be intolerant and cruel. It is tempered by the tears of tiredness when we feel overwhelmed and incapable of coping, when the endless rounds of appointments and meetings go on and on and on and still no-one understands what we’re going through.
Love is seen in the scars of our struggles. The house needs tidying, the clothes need washing, the shopping needs doing, the kids need feeding, the family needs ……everything, the school needs educating, the doctor needs informing, the days are grey and long and boring, boring, boring……

And yet we hold on.

We persevere. We learn to overcome. We become strong and resilient. We see that love is found in the cry of a baby, in the smile of a child, in the encouragement of a friend, in the kindness of a stranger. We begin to see with different eyes. We look for signs of progress and stages of significance in the life of our child. Our hearts are tenderised by all of the things we go through. Yes this means we may bruise more easily, we may find offence in things we would have overlooked before, we may hurt….and that’s ok.

In all of this Emily has taught me that love is accepting one another for who we are, not judging, not simply tolerating but fully accepting. When we are accepted we feel loved. Emily has taught me that love is finding the strength to forgive one another when we get it wrong because nobody gets it right all the time. And forgiving ourselves is vital but also probably extremely hard for some of us. Emily has taught me that love is patient and kind and resilient and courageous.


So, Foreigner, this is what love is, at least through the lens of my life. There’s always room for hearts and flowers and a glass or two of bubbly. There’s always room for balloons and cards and words of desire and affirmation (and we need to do this to encourage one another) but perhaps the greater love, the selfless love, the kind of love exhibited by parents of people with special needs, is spelt S-A-C-R-I-F-I-C-E. 

Check out Mencap's video Celebrate the Love - brilliant!



Wednesday, 31 December 2014

Footprints

(Rat-a-tat-tat)

“Hello? Oh…..2015!!! Is it really that time already? I'm not quite ready....

Hi, yes of course you can…….come on in, let me take your coat……sit down……...no, there’s no need to take your shoes off……are you staying long? ………Oh, really?.……..Better take your shoes off………If I’d known I’d have tidied up. You don’t mind me just getting on while you’re here do you? There’s so much to do. I remember telling your old friend 2014 the same thing about this time last year………What happened to her by the way? 2014? ……….Couldn’t take the pace? Unable to cope with change? …………….Well she certainly left the place in a bit of a mess, what with her Christmas parties and all…..shame she couldn’t stay to welcome in the New Year……….”

Happy New Year! Can you believe it’s already 2015? 15 years since we said goodbye to the 20th century and welcomed in the dawn of a new millennium? Each year that passes seems to be packed with so much happening that it’s difficult to keep up – am I the only one who feels like they’re running on a treadmill, putting in loads of effort and using copious amounts of energy yet getting nowhere? Probably not.

Each year holds good things – moments, days, seasons, which we wished we could hold on to forever and never let go. Sometimes they’re just the small victories of getting to an appointment on time or a holiday where the weather stayed fine. Sometimes, they’re the seemingly huge victories where justice is done, getting a child into the school you want them to attend or finally receiving the benefits you’re entitled to but have never been able to access before.

However, each year also holds its challenges. Sometimes the challenge and the victory are related, intertwined even. Sometimes the challenge appears to have the better of us, we feel like we are a failure and we stop and we weep. And that's ok. But we never give up ….because every time we get back up again, every time we dry our tears, we overcome those feelings and we begin to live like we are already victorious before the battle is even won and that's a great attitude to keep. 

What will 2015 hold for your family…… for your situation…..for your challenge…..for you?

I went for a walk last week with Emily. We didn’t go far, just up the field next to our home. It’s not somewhere we go usually but it just looked so beautiful dressed in snow (and Emily didn’t want to go far – home bird that she is). So off we toddled. It was a lovely cold, crisp, sunny day; the kind of day where your breath freezes on your lips. A glad-to-be-alive day! The snow had met a particularly sharp frost the previous night, which created a crystal carpet of sheer beauty. Everywhere we looked the sun caught these crystals and the refracted light made it look like a diamond studded landscape. All those years as children we spent making Christmas cards, dabbing bits of glue all over the front and pouring silver glitter over it until it was completely covered, before shaking it off to reveal a glittery picture. Well here we were walking in our very own picture created just for us.

As we reached the top of the hill I looked back and saw Emily walking just behind me. Then it hit me. I guess I needed the snow to give me a visual point of reference. Emily had made it to the top of the hill, not because she was walking in my footsteps. No…she had made her own way. She had trod her own path. Her footprints were very evident. This is Emily’s life. She walks her own path through life. In this town, in her own way, she is a pioneer. Emily achieves things that others have not achieved eg. she is the only person with Down’s syndrome in her musical theatre school of well over a hundred and can draw a tear as she signs the lyrics whilst someone else sings Over the Rainbow.

She is the person who has pioneered and continues to pioneer in other ways regarding her education. You know, being a pioneer is not an easy path to tread. You've got nobody else to follow. It's like the old explorers who set off on an adventure and literally drew the map as they went. In the world of disability, especially Down's syndrome, there's still an awful lot of map drawing to be done. 

As Emily’s Dad, I will always be there, as will her Mum, to show her the way, to walk alongside, to guide and to encourage, but ultimately it is Emily who walks her life out. They are her footprints, it’s her achievement when she gets to the top of the hill, she has her very own challenges, her very own disappointments and her very own victories.

Amazing, don’t you think, that when something like the snow comes along to cover up and conceal what is familiar and recognised, at the same time something is revealed which is equally familiar yet not always recognised or acknowledged. I feel a little like John Newton, the slave trader, who wrote the hymn Amazing Grace - "I once was lost but now am found, was blind but now I see".

Whatever 2015 holds for you and your family I pray that it is a year of rich blessing, unmerited favour, amazing grace, incredible progress, joy, abundance, prosperity and growth; a year where strangleholds are broken, strongholds are torn down, barriers are removed, boundaries are re-drawn; a year of health where you and your family flourish and thrive. May this be a year where we all recognise the potential within each one of us and then do all we can to release, and fulfill, that potential. May it be a year where more and more opportunities arise for people with Down’s syndrome, and other learning disabilities, to enable them to fulfill their potential and to be free to be who they are. May we help them, and release them, to walk their own path and to make their indelible mark upon this earth with the footprints only they can make.

Before you know it, 2015 will be putting her shoes back on and closing the door behind her. What kind of story will she tell, I wonder……?






Monday, 29 December 2014

Christmas Reflections

"And so to winter at last we head, its crystal carpet once more we tread..."

I have always loved snow. I love watching it fall. In an instant I am transported back to my childhood, hoping that it will be heavy enough to be able to go out to play, to build a snowman, to throw snowballs, to walk and hear that unique crunch you never hear at any other time. I love the way snow transforms the most desolate of landscapes into something beautiful; magical almost. And, as I’ve got older, I’ve grown to love the way an unexpected snowstorm can change our day, put on hold our plans, cause everything to become still.


Silent.

Well not quite everything. For those of us with families at home, snow can cause chaos. It can mean we are unable to take our car out which is usually inconvenient, especially as we get down to the last six pints of milk and two loaves of bread and immediately begin to panic about how we will survive another 24 hours!

(what is it with the milk and bread panic shopping?)

And I’ve always loved Christmas. I love what it means, as a Christian it’s an important time of year, the celebration of the birth of my saviour. But I’ve always loved the way that Christmas makes me feel. Christmas has a unique spirit that is not evident at any other time of the year. It’s hard to capture it in a sentence but I’m sure you know what I mean.

Yet for many who have children with additional needs, Christmas can be a particularly stressful time of year. I know it has been for us over the years. As a younger child, Emily was not particularly interested in opening her gifts. Once the presents were opened Emily was usually far more interested in the wrapping paper or cardboard boxes than ever she was with the contents. And more often than not she would spend most of Christmas Day up in her room playing with her “old” toys, watching her “old” DVD’s, uninterested in anything that Santa has brought. Many times we tried to coax her back downstairs to look at her toys.

Quite stressful.

It was such a relief when we came to the realisation that the best thing to do was to leave her to enjoy Christmas her way, not our way!

To get snow at Christmas this year was truly magical. The car journey home from Emily's Nana’s house was not especially enjoyable, especially as we had our new baby granddaughter with us. However, once we were home and safe and we watched the snow fall and could see it transforming our world into something resembling Narnia, it was truly beautiful. If Mr Tumnus or Aslan had appeared that would have made it perfect. Alas that was not to be but it was still fabulous to get snow at Christmas, it gave us an unexpected opportunity to spend more time with our family than we had planned.

Christmas can be the most amazing time but ultimately can feel something of a letdown after all the hype, the shopping, the food, the presents, it seems to have gone before we stop long enough to enjoy it. Yet the snow this year held up our plans, slowed us down, changed our thinking and enabled us to really enjoy what’s best about the season, spending time with our family.

As I reflect upon this Christmas, yes I’ll be thankful for the gifts and the food and the time off work but the best thing, the most memorable time, was having our plans interrupted by the snow. I’ll remember running outside with my adult children and having a snowball fight, I’ll remember us building a seven foot snowman, I’ll remember us having to fix spare beds as everyone had to stay, I’ll remember standing in the kitchen, alone, listening to the hubbub from the lounge of the “kids” getting excited playing scrabble at midnight, looking through the crack of the door to see my beautiful granddaughter asleep in her Nanna’s arms.

And one thing I will never ever forget was seeing Emily’s face when she excitedly opened a gift to find the new phone she had been hoping for. The look of wonderment on her face was worth a million Christmases. 

Sheer joy!

A Christmas Reflection


Saturday, 13 December 2014

Emily's Christmas List

Emily is a list girl. She is very much like her mother and elder sister in this. Emily will write pages and pages of lists, or perhaps I should say pages and pages of a list. One list at a time, nearly always longer than Santa’s list for all the good boys and girls. Her pen often churns out ink faster than the vidiprinter churns out the football scores on a Saturday afternoon.

Last year, Emily’s Christmas List contained such treasures as a nest, a carpet, Ant & Dec and some spinning plates – a fairly eclectic collection of wishes I’m sure you’ll agree. So I waited in eager anticipation of this year’s Christmas list. What could she be after this time? – a newly seeded lawn maybe?, a pair of curtains? or perhaps a cutting from Demis Roussos’s beard? Whatever it is, how on earth could she top last year’s wish list?

Well the truth is she couldn’t. She didn’t even try. After reading the list I was strangely disappointed. It looked like the Christmas list for any other 22 year old (if 22 year olds made written lists that is). Well, perhaps not, any other 22 year old but it was generally quite sensible. I mean, which young lady doesn’t want perfume, a new dress and some diamonds? (Hands up if that's you!)

And this has troubled me for a week or two. Why am I disappointed that my beautiful, yet slightly crazy, girl has written a Christmas list which is more in line with her age?*

*(At this stage I should put a disclaimer in and say that, whilst it is largely sensible, there are one or two exceptions, some of it is not age appropriate, some of it is just plain bonkers, but that’s what makes Emily Emily. Yes Emily has a learning disability; but she also has a wacky, crazy, endearing sense of humour. She wants to make people laugh. And she’s very good at it. She’s always lived in a house full of loony tunes so it’s perfectly natural that she would want to follow suit. No somewhere along the way the line between learning disability and a crazy sense of humour has become very blurred.)

Oh dear, I shouldn’t go off on tangents, I always struggle to find my way back. 
*makes a note to leave a paper trail for next time*

Yes, yes, I was wondering why wasn’t I? Why was I feeling disappointed with Emily’s list this year?  Why did I consider asking Emily to write it again? The answer is simple. I was hoping that by having a list to rival 2013 it would prove how crazy Emily is. I was thinking that if I publish this list it wouldn’t be as funny as last year; that it might be letting other people down. Now that really is crazy. I was treating it as though she was writing it for my benefit so I could say “look at my girl – nutty or what?” etc.

However, I completely missed the point that Emily is growing up. She’s not trying to make me laugh with the list, it’s just what’s in her head and on her mind. And if that means she is being entirely sensible, or slightly bonkers, that’s fine. She has nothing to prove; nobody to impress. She doesn’t care whether anyone else reads the list or whether they find it funny. She’s just being herself. And that’s the best any of us can be; ourselves.

So here it is, unapologetically Emily's own random thoughts and wishes (with my comments added in brackets):

Emily’s Christmas list 2014

Perfume
New phone (she’s great at texting and I’m proud to say makes every effort to spell every word correctly)
New book of fairy tales (we all want a fairy tale life)
New hair band
Bikini
Poster of B*witched (she’s a 90’s chic – what can I say? C'est la vie)
New waist band (yes, on many Christmas lists this year – lol)
Hair colour
Kesha outfit (I admit I had to look this up – I had no idea who Kesha is…hope Santa does)
New boy (DO NOT let on to Jono!)
Toilet seat that plays the Eastenders theme tune when you sit on it (this is her joker card - make of it what you will but I think she may be on to something)
New DVD
New CD’s
Clothes
Chocolate (obviously)
Dance mat
New dance DVD
Some new pants (nice)
New gift card for New Look
A new leather jacket (she’s turning expensive)
Frozen gift set
A Girl Talk magazine
New girly dress
Cocoa butter body cream (she’s turning into a woman)
Diamonds (Gulp - she’s turned VERY expensive!)
A new mini skirt
A new lavatory pass (this is something they use at college to use the loo during class apparently - the mind boggles what happened to the old pass!)


And there you have it for another year. What’s on your list this Christmas?