Showing posts with label sisters. Show all posts
Showing posts with label sisters. Show all posts

'So Good I've Read it Twice', Mia reviews Sister, Sister

It's Summer, (apparently).

The school holidays are here and there isn't a moment to breathe. Blogging takes a back seat and reviews are bottom of the list of priorities. But one request stood out. Would we like to read a book? 

"If it was out of 5 stars, I'd give it 5 stars. 
It's so good I've read it twice!"

A book called Sister, Sister. A book for tweens, where one sister has an illness and the other has to decide if she can save her life by donating bone marrow.

Mia reviews Sister, Sister by Jess Bright. "So good I've read it twice."

Big Sister Mia Describes What a Learning Disability Is for #LDWeek15


My name is Mia, I’m 11 years old and I have a younger sister called Natty who is 8. Natty and I both love netball and horse riding and singing and baking cakes and watching films. We both have Blue Peter badges. 



Mia from Downs Side Up writes about Learning Disability for #LDWeek15

Natty also has Down’s syndrome, which means she has an extra chromosome in every building brick of her body. I think they look like wonkey Twiglets.


Fabulous Book Feedback from our Youngest Customers


Fabulous feedback from the readers of our little book is what motivates us most.


Fabulous book feedback from Downs Side Up's youngest customers is what motivates us. Thanks to Brídín Nic Dhonncha for permission to use this photo of his sons.


Publishing your first book is a daunting process 

Really it is. It feels like sending a much-loved child out on their own into the big wide world. There's a little bit of your soul within those pages and you don't know where they will end up.

99 Star Review by DSA Editor

Kate Powell is the editor of the Down 2 Earth Magazine at the Down's Syndrome Association. Kate also has Down's syndrome herself. We were honoured when she agreed to review Mia's book I Love You Natty

Her kind words of encouragement mean so much. High praise indeed. 

I   really like this book   because. I am impressed it’s great
This book is about a Sister(Mia) writing about her Sister(Natty) with Downs syndrome and they like Spending time together
This   Book is worth reading   because it’s Educational   for lots
Of   Children of all ages   this book can help a lot People s Views towards People with  Downs Syndrome. 
This book Can be the start of friendship between Siblings

I  will  give  this Special Book  99  stars  it’s  very new
Please read this book  don’t  look away

Signed  Kate Powell


I love You Natty can be ordered through your local Waterstones 
or purchased direct here from Amazon.



Win a copy of Mia's book!


The last week saw a heady mix of emotions as we launched our first self-published book: I Love You Natty: A sibling's introduction to Down's syndromeWe are giving two copies away on the blog this week (scroll down for details).


I Love You Natty: A Sibling's Uplifting Introduction to Down's Syndrome

Young girl from Cornwall publishes a heartfelt book to help other children welcome a new sibling with Down's syndrome



Seven and a half years ago I sat at my computer and typed 'Down's Syndrome' into the Amazon book search facility.


One little girl, aged two, lay in bed asleep upstairs. Another, aged a few days lay in an incubator in neonatal intensive care.


I wanted a positive, realistic book that would explain to our eldest why her baby sister could not come straight home, why Mummy and Daddy were shedding tears, why she had been christened wearing nothing but a nappy right there in the hospital the week before, why she would need heart surgery one day and how, hopefully (Hope is her middle name as it happens) they would have just as much fun and do all the same things together as any other sisters would with time and support. 

I wanted a book to carry the other adults in the family forward too, lift us from our place of desperation and worry, something that would tell us it was all going to be OK.


I found plenty of useful factual books, a smattering of outdated offerings, inspiring novels and biographies for adults and a lovely tale for kids with illustrations that we still reach for now, but the bright cheery snapshot of the life of a modern family that I needed to see as much as Mia, stuck in my mind and I guess it later became to basis for my blog Downs Side Up.


Then a couple of years ago I began finding little notes and poems, drawings and declarations of love lying around the house. This is Mia's way of letting us know what she is thinking, and we often leave similar treasures for her to find too. Some that she wrote for Natty were so precious that I kept them, and there in an instant one evening, I realised they formed the basis of a book.


She wrote, " I Love you Natty, you are the best sister in the world and so precious to me. You are so important to me and if you weren't in this world my life just wouldn't be the same."


We asked Mia questions to fill in the gaps, added our family snapshots alongside Mia's drawings and the book began to take shape. 


A dear former colleague who creates college brochures offered to create a document that we could use as a template to print on demand via Amazon. Nearly a year later, a lots of hard work and creativity, she showed me what she had produced. Our tears were a sure sign that the book had exceeded our wildest dreams and was sure to touch the hearts of others.



Mia checks the book proofs
A title tweak and some online bullying caused more stress than could be imagined, and then the realisation that the book was too elaborate to fit the standard print on demand template and to create each one as they were ordered was looking like it would cost over £12 each. 

Options? Options? 
It was a little late to find a publisher, we were ready to go and I was adamant that the book should cost no more than £5.99 to make it affordable to as many families as possible. The only obvious solution was to bite the bullet and print them in bulk ourselves, house them at home and ship by hand.

So now we are proud to announce the launch of Mia's ground-breaking and beautiful sibling support book I Love You Natty: A Sibling's Uplifting Introduction to Down's Syndrome

It's been endorsed by eight leading UK charities, including Mencap, Makaton, Portage and the Down's Syndrome Association, who have tipped it as the perfect introduction to Trisomy 21 as the condition is also known.

The book is available on Amazon, priced £5.99 + P&P  or can be ordered in to any branch of Waterstones with their Click and Collect service.   

ISBN 978-0-9929251-0-9

For bulk orders, or to speak to the authors, contact downssideup@gmail.com 


Since its launch we have been rushed off our feet, they are literally selling like hotcakes, so much so that I've only just found the time to blog about it! Our hope is to be able to cover costs and then give some away to charities and Health Visitors and so on.



The art of photobombing the 'books ready to post' shot

Already they have found their way into neo-natal units, libraries and schools and the home of at least one adoptive family and have been shipped to America and Australia and everywhere in between. That makes all the hard work worthwhile.


We hope you like our little book of love too...



I Love You Natty: A Sibling's Introduction to Down's Syndrome





Downs Side Up produces its first support book



Mia and Pippin dream up a new title for her first book

Just over 7 years ago I sat in front my computer screen in the late evening whist expressing milk with an industrial pump that would service a herd of cows, and I Googled 'Down's syndrome' for the very first time. 


Video clip: Natty wants it to be her birthday too...


This weekend sees big sister Mia's 

10th birthday 


and last night we planned a surprise party with a few of Mia's school friends.

A brief burst of filming before we left revealed a rare gem of a  comic moment from Natty that I simply had to share.

Of course she knows it isn't her birthday, she's teasing me, pulling my leg, her eyes twinkling with mischief. But she wants it to be her birthday all the same. 

But then I guess we could all do with at least 2 birthdays a year couldn't we ;)




             


Readers' Stories - Katherine Routley


Katherine forwarded this poem, written by her sister when their daughter Megan was born. It certainly brought tears to my eyes, and will yours too...



Mia and Megan

Dearest Megan…. With Love

In September 2011,
A gift from up above,
Was sent down to us from heaven,
To cherish and to love.

You were born quite unexpectedly,
Though a wonderful surprise,
That After 9 long months of waiting,
You now lay before our eyes.

A precious new sister for Mia,
A beautiful new daughter too,
A gift to my wonderful sister
That no one deserves more than you.

A perfect little package,
With 10 fingers and 10 toes,
As small as baby Annabelle!
With a tiny button nose!

We were told that you are special,
Maybe different from the rest,
But of course we knew that already,
Because to us you are the best!

But it wasn’t to be quite that simple,
For what we were about to hear,
Which was every Drs nightmare,
And every parent’s worse fear.

How could it be you’re so poorly?
When you look so perfect and well?
But the Drs knew what they were looking for,
And that’s how that they could tell.

For to them you were showing some tell tale signs,
That’s you carried the 3rd chromosome,
But to us that didn’t make sense at all,
Did that mean you wouldn’t come home?

Of course we know now, that it didn’t mean that,
And we now know just what it means,
Because Trisomy 21 makes you special,
Due to something in your genes!

And although things weren’t as expected, 
And at first we all felt afraid, 
but who are we to question,

The choice’s that God has made.

For he gave to us an angel, 
so precious and so sweet, 
and we will thank him each and every day, 
for the fact that we all could meet.


Megan, you are our angel,
And you are the love we adore,
You may need us more than ever its true,
But we will certainly need you more.

We will turn our times of sorrow 
Into happy times at last,
The crying and the heartbreak, 
Will soon become memories of the past.

 
We'll look forward to the future, 
and the milestones that it holds, 
we'll battle all the up and downs,

As they each unfold.

You were sent here for a reason, 
it was clear right from the start,

You will be loved forever and ever,
From the bottom of our hearts.


Silent Sundays

Tooth and tears - Sunday 30th September


Natty: model, sister, daughter, friend - Sunday 23rd September

Silent Sunday - Home Ed: 'a' and 's' the kinesthetic way!
Sunday 9th September 2012



Silent Sunday - Mia's Love 2nd September 2012


Silent Sunday Natty's modelling debut with Frugi 26th August 2012

Silent Sunday Shhh, don't tell mum 19th August 2012

Silent Sunday Family volleyball 12th August 2012


Silent Sunday 29th July - Hush Little Cousin x




Silent Sunday 22nd July '12 - Sisters in the Sun






Silent Sunday 15th July '12 - Junk Robot.







Silent Sunday 8th July '12 - Cycling!