Book Reviews: Milky Moments and Who's Not in School?

I am so very proud of a cluster of writing friends who have all published incredible books this year. 

Having ventured down this path ourselves, I will never underestimate again just how much goes into producing a book. It's exciting, exhausting, expensive, stressful and what I didn't anticipate is just how very vulnerable you feel when the work is launched. You doubt every detail, you nervously wait for a response and I think anyone who dares push themselves that hard for something they believe in deserves our support and praise.

Readers' Stories - Andie Barker

Andie Barker sent in this poem she wrote in the early days after her daughter Hope was born. It is honest and full of love. It will bring a lump to the throat of even the hardest hearted.

Hope: Pretty in Pink

• I think she has downs I heard them say
  No my head screamed, oh god no way
  They passed her to me, I didn't look
  They put her to breast she started to suck,
  But something was wrong, 
  As a mum I knew
  Her hands feet and body were turning blue,
  
  
  Get the doctor I heard them call
  As the walls of my mind began to fall,
  I couldn't do this they must have it wrong
  Where was my princess I wanted so long,
  The doctors came with a look in their eye
  As they took her away, I was scared she
  would die
  
  
  Then it hit me like boom in my brain
  Pull yourself together you're a new mum again
  Fighting for her life among wires and things,
  Machines making noise ping ping ping
  She has to pull through, she has to stay strong,
  She's my flesh and blood, don't make me wrong
  
  
  Sink or swim my time was here 

  and now,
  Decisions I made would alter everything somehow
  For two whole minutes I had doubted me,
  Now I'm the proudest mum for the world to see
  Nobody wishes for a child with special needs But we get what we get, when we sow the seeds
  
  
  Babies don't chose to be born this way
  It's nobody's fault, believe in what they say
  So things will be different, things will be new
  But your new baby waits for nobody but you
  We named you Hope when we knew you were a gal
  A name you have lived up to it fits you so well
  
  
  You're not the end of the world as they led me to think
  
  
  You're our gorgeous daughter all cute wearing pink .
  
  
  

The Secret Ingredient is Hope

A friend gave Natty this figurine
when she was born

I had never really thought too long and hard about the reasons behind the names we chose to give our girls, until Downs Side Up found itself in the public eye.

We had a rough shortlist of names we liked during both pregnancies, and then waited to meet our babies before deciding which names suited them.  As a parent you concentrate on the child, their personality, their needs, breastfeeding, medical issues, (sleep!) ...and then suddenly, one day, hey presto, they just 'are' the name you gave them.

Of course when Natalia was born, the medical complications were considerable, and we found ourself in a deep dark place of shock as her Down's Syndrome had not been diagnosed antenatally.  She was Christened at 3 days old (or so, this time is a numb blur) and we quickly picked a name before that occasion.  Her due date was Christmas Eve and, despite being born slightly early, we chose a name that comes from the root 'natale' meaning 'birth' and 'Christmas'. Natalia it was then.  The first ingredient.

To be honest, we feared she would die at that time.  So the middle name Hope was added to the mix.

Some weeks later, when our little, frail new bundle was allowed home, a local GP requested to be her doctor, as his Grandson also boasts an extra chromosome.  I walked into his surgery for the first time that cold January morning with the tiny baby I still could not look at without feeling overwhelmed and afraid.  He simply beamed at us and confidently said, "right, now let me hold this beautiful baby I've heard all about." As I passed her into his arms, he looked at her kindly, smiled and softly said, "Hello Natty."

The nickname was coined.  It found her.  It suited her, and let's face it, it's a lot easier to get her gums around than 'Natalia' (what were we thinking?).  It's also fairly unique, save for a great Reggae artist of the same name.  I like the Caribbean overtones, it's catchiness.   It's a happy, jolly onomatopoeic kind of word that captures her essence.  Short, but very sweet, and always hand in hand with Hope.

Of course we knew all this history, our own private, fond, family nickname genisis, born of affection.  However, an online newspaper article reader, without giving her cutting comment a second thought, piped up "Pretty little model, but why did her parents give her such an ugly name.  It sounds like an insect!" Most tellingly, and ironically, the critic kept herself (just a hunch) anonymous!  

But always there was Hope.  Was it secondary, a middle name given as an after thought?  No.  It was at the very core, the vital ingredient.  'Natty' is the fun, first impression, the outer packaging. 'Hope' is what she is made of inside, the delectable soft centre.  What lasts and endures, and what radiates out to those around her.  

And once you choose hope, anything is possible. 

Poem of Hope at a Christening

This heartfelt, simple, yet powerfully optimistic poem was written and read to Natalia on the occasion of her Christening party by a dear friend of mine. It still makes the hairs rise on my arms when I read it now.

The party was held in our garden and attended by friends, family and key medical staff many weeks after she was Christened in her hospital incubator.

Natalia,
You are the new bud on an ancient tree.
You are the beauty beheld by your father's eye.
You are the voice of your Mother's laughter.
You are here and
You are now and you will be.
And look at you!
You look pretty wonderful to me.
You are you, Natalia.
You are our friend.
We will walk with you
And we will love you.

The Touch that Will Change the World

Sometimes the most tender words of support come from unexpected sources, and when you are least looking for them.
Today, someone very senior in Natty's world of education, someone I have a great deal of respect for, sent me an email with the words, 
"...the bit about the touch that causes the touch...that's you!"

There followed this poem, by Kent Nerburn.  Read it slowly.

There is in each of us, no matter how humble, a capacity for love. 

Even if our lives have not taken the course we had envisioned, 

Even if  we are less than the shape of our dreams, we are part of the human family. 

Somewhere, in the most inconsequential corners of our lives, is  the opportunity for love. 

If I am blind, I can run my hand across the back of a shell and celebrate beauty. 

If I have no legs, I can sit in quiet wonder before the restless murmurs of the sea. 

If I am wounded in spirit, I can reach  out my hand to those who are hurting. 

If I am lonely, I can go among those who are desperate for love. 

There is no tragedy or injustice so great, no life so small and inconsequential, that we cannot bear witness to the light in the quiet acts and hidden moments of our days.

And who can say which of these acts and moments will make a difference? 

The universe is a vast and magical membrane of meaning, 

Stretching across time and space, and it is not given to us to know her  secrets and Her ways. Perhaps we were placed here to meet the challenge of a single moment; 

Perhaps the touch we give will cause the touch that will change the world.

These words remind me of an elderly lady I met on a bus once.  She wore dark glasses.  She told me her eyesight was failing and she had been to visit a famous landmark that afternoon to wonder at it's beauty.  She could only see contrast, but she said she felt so lucky that she had warning of the loss to come.  That she could go out and savour each last moment of sight, to remember for ever.  What courage.

I hope these words bring the boost that many of you need.  

You are all touching the world and bringing about change.

Our amazing children all deserve a decent shot at life because they too will create change in others.

Photo Gallery of Hope

I got off to a bit of shaky start...

When Natty was born we experienced the darkest, most  terrifying times of uncertainty.  We had not signed up for this!  We knew next to nothing about Down's Syndrome.  What would she become?  Were our lives to change forever?

I recall thinking that we would never again be able to go for a walk on a beach as a family...holidays and travel would be impossible...her sister would be affected by her limitations....everyone would stare at us everywhere we went and say cruel things...our daughter would not be beautiful...

But a kind, knowing neo-natal nurse, who had a daughter with Down's Syndrome, leant us a small family photo album.  
We pored over page after page of simple snapshots; kids hugging on a sofa watching TV, kids opening presents and blowing out birthday cake candles, kids in the bath, kids playing instruments... and kids making sandcastles on the beach!

A perfect bridesmaid (twice so far in fact).

This was a turning point for all of us.  Those photos gave us more hope than I can describe, at a time when we could find very little that was personal and encouraging online.  We determined there and then to expose Natty to every opportunity and experience that her sister had had and was going to have in the future.  5 years on and we are reaping the rewards as we see them both florish.  

So here are a few photos from that journey so far, a journey that has had its many ups and downs along the way.  We hope, via these images, to spread encouragement and positive thinking for other parents.  It's hard work, it takes love and patience, but the sky really is the limit.

I love exploring smells...

...and texture.

I am a little comedian

I love my sister

I sometimes stray...so watch out!

I party hard...zzzz

Sometimes Mummy has to force me to enjoy new experiences.  I'm always glad she does.  I moaned for 20 minutes before I let the dolphin kiss me  :)

I make new friends wherever I go
Photograph by Traci Giles Photography

Pretty aren't I?
Photograph by Traci Giles

I won several rosettes, including this SPECIAL, in the gymkhana, riding Jessie x

Check out my dance moves!

I worked hard at kindergarten

I love doing art at home

The moment I graduated from kindergarten...PRIDE is written all over everyone's faces, tears abound!
I love Daddy too!

I took my first minutes of (mainstream) school very seriously, and got stuck straight in

I loving trying new experiences...I am FEARLESS!

and I am very proud of myself :)

To conclude, yes, our lives have changed forever.  We have learnt to see life through the eyes of one who views and experiences it differently.  We now live life on the 'other side'.  Believe me, it's a lot better.

Oh, and yes...we go to the beach often. 
We travel far and wide, making friends wherever we go.  
Natty is a great ice breaker, and her sister is the wisest most sensitive 7 year old I have ever met.  

And not one single person has ever said anything cruel about her...lingering looks and insensitive questions perhaps, but never anything intentionally cruel.  An ambassador she is... and VERY BEAUTIFUL :)


And special thanks to photographer Traci Giles, more used to taking pictures of Hollywood stars, who took such beautiful shots of Natty on holiday after she stole her heart xxx