A Godmother's Turn to Speak

The following words are written by Natalia's Godmother, my former language teacher boss, close friend and a lady for whom I have great respect.  When Natty was born she had a no-nonsense attitude of, 'that is that, and that is God's will.  We will all be here to help you.'  Help she has, for although she is a busy lady, she has always believed in our abilities to do the best for Natty, and she is always there in a crisis, dropping everything to help out with an emergency hospital stay if Bob is away.  On the occasion of Natty's Christening party, I will always recall her saying to me, 'None of us really knows how strong we can be, until we are forced to be strong.'  Wise words indeed.


Natty in the arms of her Godmother.




"I will never forget the day Natalia was born. 


Hayley and Robert asked me to go to their house and stay with Mia as Hayley was about to go into labour. It was going to be a home birth, so someone had to look after Mia, then aged 3. 


I spent the evening sleeping in Mia's room.  Come 7 O'clock in the morning, Hayley was still in labour, so I decided to take Mia home with me. 


We played all day and waited for news.  It was late in coming and I was getting increasingly anxious.  When Robert finally phoned he said that Hayley was fine, the baby had been born, but that she had Downs...  

The rest is the inspiring story of anxiety, uncertainty, fear, hard work, trust, faith and finally intense love and care for human life and dignity that the readers of this blog have come to know and admire.  I have witnessed closely the degree of self-education Hayley and Robert have had to undertake in order to nurture Natalia in the best possible way. 

Recently,  after I had not seen Natalia for quite some time, I spent an afternoon with her - baby sitting basically, while Hayley took Mia out for the afternoon.  We played, did art work, read books and watched films.  It struck me afterwards that I was completely unaware I was dealing with a 'special needs' child.  I had forgotten about her disability completely.  

She was reading school books intended for her age, knew which videos she wanted to watch, knew how to operate the computer to play them, expressed her likes and dislikes, and in short was a child like any other, albeit one who was in some ways a couple of years younger than her chronological age. 

She related to me and accepted me but would not hesitate to exert her will.  I believe this is because Hayley and Bob, whilst providing for her  physical and educational needs in every way, actually treat her in the same way as her sister around the house. They did not lower their standards in terms of discipline and social etiquette.   She was delivering what had been expected of her.  I was struck by this.  It affected me greatly. "











A Little Light-Hearted Blog-Off



How this Blog Came to Fruition
A recent perusal of my Twitter feed threw up the following comment; "My son is better than yours!" Now, I'm no boy racer, but there's nothing like a comment like that to catch one's eye.
I replied "Thank goodness I've got girls."
His retort?  "My son is better than your girls too!"
OK, so the gauntlet had been well and truely tossed down.  I could not refuse his challenge.
Next step, actually read his blog.  So I clicked the link to a lovely, lighthearted blog, written by a very proud Dad of a beautiful (typically developing) 9 month old boy called Dylan.

A Small Note Before We Begin
I am not one too boast about either of my children, their capabilities or achievements.  I am immensely proud of both of them, but I see wonder and potential in all children around me.   I support and encourage families with children who have Down's Syndrome, all of whom are unique individuals.
So, I write this for all parents of a child with a disability of additional need, in order to show the world that our kids are 100% perfect too...

Natty in a Nutshell

Special Talents and Behaviour
As just a spec of a person-to-be, Natty was lucky/clever enough to pick parents who chose to allow her to actually have a chance at life.  With a 90% termination rate for babies like her, that's really quite a talent.  (Thank you for choosing us Natty!)

Natty has been a fighter and a winner from birth, working extra hard to achieve everything she is and does.  She overcame dangerously low SATS, and 2 holes in her heart.  She magically closed one by herself, then survived heart surgery to correct the other.  Oh, and was blowing raspberries at the surgeon within hours... She has bravely fought off pneumonia and a raft of upper respiratory infections that have caused hospitalisation, given more blood samples that most adults can imagine in their lifetimes, always with a smile and a hug for those helping her.

Natty is one of life's ice-breakers and more importantly an ambassador.  She enters a room and people are immediately engaged, and focussed on her.  She melts even the hardest of hearts, smashes stereotypes and stamps all over people's preconceptions of Down's Syndrome, usually with a rendition of a Mary Poppins Song followed by a fake burp and a gift of an imaginary chocolate cake.

She is also highly tuned to the feelings of others.  Her radar is immediately activated if she hears another child cry, and her work is not done until they are comforted.

She is also attuned to the delicate beauties of the world that we all miss.  We smile each time she stops to sniff a humble daisy, exclaiming 'ooooh, pretty!' for example.  How much we all miss around us.  We all need a Natty to remind us.

But by far and away the most import trait that Natty has is the ability to make people reasses their priorities in life.  Since her arrival, all who know her have realised that these priorities are friendship, love, great food, music, dance and the ability to live in the moment and adore that moment exclusively before moving on. Nothing else really matters.

Appearance
We all know that the most precious gifts come in tiny packages, and Natty is that.  Petite and cute, with delicate features that would befit the most perfect doll.  Doe eyes, long lashes, perfect skin.  She has a kind of endearing, angelic beauty that radiates from her innocence within.  It is a new yet ancient, true beauty, and one that is challenging the world to reasses what it sees around it.

Natty is one of the first children with Down's Syndrome in the world to become a model.  She is working for clothing companies and holiday companies, promoting their brands.  People are sitting up and looking and saying 'Yes! It's about time we saw the face of disability in this light!'  She is living proof that beauty takes many forms.

Her story has clearly touched a nerve, because it has been featured in The Sun, The Mail Online, Bella Magazine, AOL, The Paediatric Nursing Journal, BBC Radio and, of course, she was invited on ITV's Daybreak.  Need I say more?  She's bloomin' gorgeous.

Physical Development

Natty worked at least 100% harder than her sister to learnt to sit, crawl and walk.  Physio, daily exercise and additional support were built into her routine in a fun way.  Let me tell you, the pride when she reasched those milestones is unmatchable, the feeling that they have done what you feared they may never be able to do, indescribable.

Natty has worked even harder at learning to talk and read.  Our house is adorned with flashcards, visual timetables and special books that we dip into at every opportunity. She speaks with clarity and fabulous intonation, but only after constant practice, something her easily chattering peers would find hard to compute.

Value for Money
Natty is priceless!

Overall Rating
As you can see Natty is 100% perfect in every way.  
But, Dylan's Dad, my child has more chromosomes than yours!


I have enjoyed our duell.

Read the opposing blog at 
http://thedaddyadventure.blogspot.co.uk/

Over to the unbiased adjudicators.....





A Few Questions for Natty



Mike, Natty's Mighty Steed!





Here's Natty, talking about a few of her favourite things, in her own inimitable way.
Actually, less 'chatting' than is ususal, more 'rocking Val Doonican style', but a cute little interview none the less.  We hope you enjoy!






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



Natty, 5 - Model with Down's Syndrome


Never lose an opportunity of seeing anything that is beautiful, 
for beauty is God's handwriting -- 
a wayside sacrament.
Welcome it in every fair face, in every fair sky, in every flower, 
and thank God for it as a cup of blessing.
- Ralph Waldo Emerson




Natty models for  Frugi

When I began writing Downs Side Up some 6 months ago, my motivation was partly to show the world that children with Down's Syndrome are utterly beautiful, certainly not to be feared and deserve a place in the heart of our communities, where they can live in a fully integrated way and give so much back to those around them.  I wanted to uplift and inspire new parents, show them the possibilities, give them courage.

I began thinking of a many-pronged approach to reach this aim and the blog became the hub or core from which all other threads emerged.  Then came Downs Side Up on Facebook, more recently we've been getting our voice heard on Twitter @downssideup and laterly on Pinterest.  It has been amazing to meet so many like-minded, inspirational parents here, but my thoughts soon turned to how I could preach to those who were not already converted.

I started thinking that our childrens' beautiful faces should be visible in everyone's lives, popping up in catalogues, magazines, on TV, ads even, another facet of globally accepted beauty.  
I started writing to companies and model agencies, 2 or 3 a night every night, asking for their support.  Several were very supportive but politely said Natty was not 'chocolate box perfect' enough.  Others ignored my emails completely.  But a special few replied immediately with an open-armed 'yes'.  Frugi organic kids clothing was the first, the other was Scott Dunn Travel and then came Jojo Maman Bebe, who coincidentally use several models with Down's Syndrome and are proud to be inclusive employers also.

Modelling wouldn't be everyone's cup of tea, but little show-off Natty is a natural in front of the camera.  At our first Frugi shoot she began posing before we had even changed her out of her school uniform!  Highlights of the afternoon were a vigorous game of kiss-chase with a male 3yr old model, (Natty was to be heard called 'come here and kiss me now!'), stroking the photographer's stubbly beard (No, that wasn't me. Honestly.), and dancing with a cardboard owl (what a hoot!).  

After this, national paper The Sun, online publications such as The Mail Online, our local radio station, Bella Magazine and even ITV show Daybreak wanted to share the story of a little girl with Down's Syndrome taking the modelling world by storm...well, turning it on its head anyway.  With each published and broadcast story, Natty clearly shouted from the rooftops that Down's Syndrome is to be embraced, loved and accepted.

Natty's agent Alison Smith-Squire 
writes about how the 
Downs Side Up word is spreading


Of course, all parents of children like Natty know why they are so beautiful.  It isn't simply the packaging on the outside that makes them so, although their delicate features apparently echo those of the perfect dainty doll.  No, it is something that radiates from within their souls, their innocent hearts, that 'live for the moment' Joie de Vivre, that being utterly absorbed by every activity they take part in, giving everyone they choose to interact with their undivided attention and that born desire to be the centre of attention.  Or is that just Natty...?



Also read The Photo Gallery of Hope
The Face of Disability in Marketing
Gorgeous Models: One with Down's Syndrome


Daddy Downs Side Up Remembers

A usually intensely private man who holds his cards close to his chest, Natty's Daddy speaks of her arrival into our world.



Daddy Downs Side Up remembers the moment his youngest arrived in this word


A blog about Natty, by her daddy. 

As our second pregnancy progressed we were told there was a one in 300 ‘risk’ that the baby had Down's syndrome.  (I now note with sadness the negative language used.  We think of it now as a 1 in 300 ‘chance’.)  

Big Brother Talks of his Love for his Little Sis with Down's Syndrome





Natty says she thinks everyone should have
a really big brother to pick them up
when they fall in the mud.
 

Natty – ‘just’ one of my 4 wonderful sisters.

In some ways it is hard to put into words how I feel about Natty as I don’t think of her any differently to how I think of Mia or my other sisters – they are all ‘just’ my sisters, each one an individual.  I don’t mean ‘just’ like I’m taking them for granted, but rightly or wrongly I don’t think of, or indeed treat Natty any differently because she has Down’s Syndrome.

My wife, Leah and I had visited Dad, Hayley and Mia only a few days before Natty was due and all appeared as expected. We had a lovely day out, visiting Father Christmas and had left Cornwall for home, unsuspecting about what was about to happen. Dad and I talk frequently but not every day, so when we had not heard from them for a few days we were not too concerned, but as it dragged on a little we made more calls and eventually got hold of Dad to be told the news that Natty had been born with health complications and that she had Down’s.

It’s fair to say that I am my father’s son, and the characteristics extend beyond a fondness for red wine and chocolate éclairs, so I also have the same ‘digest and deal with it’ attitude that he possesses. As a result I don’t recall being upset for Natty, but instead tried to offer help and support, but I don’t think you can ever really say the right thing at a time when people are trying to comprehend an unexpected situation... We offered to make the journey to Cornwall to be with our family, but as we were travelling down a couple of weeks later for Christmas it was decided that there was not much we could do to help. This meant that we did not know all the things that went on in those 1st few days of Natty’s life and Leah and I are reading these blogs with as much interest as you, so we can try to understand all that happened. Reading Hayley’s blog has made us understand why we felt a little in the dark about some of the events that took place around the time Natty was born.  We now understand the shock and worry that took over.

So when we got to meet Natty for the 1st time, 3 weeks after she was born, I guess I had already come to terms with the news.  When I saw and held her she seemed just like any other baby – albeit one that needed a little extra help feeding (which would certainly change!). This mindset has stayed and I still don’t think of Natty any differently to Mia. Leah and I do all the things that Big Bro & Sis should do, like chase her and Mia round the park (and get them muddy!), introduce her to good rock and roll music along with a nifty few dance moves, sneak her a few extra crisps as a snack before teatime and give a leg-and-a-wing until we can lift no more. 

Natty has highlighted my awareness of disability and changed my perspective on some things – I find myself getting angry at even the thought of someone making fun of her, and many times I have played over in my head what I would say if I were to hear anyone with a derogatory comment. But I think it takes the situation to happen to you before you know how you will react, and I would like to think I would try to gently re-educated people with prejudices in a way they understand. But I guess it comes back to where I started with the opinion that Down’s does not make Natty different to you or I. Yes she needs to learn in a different way and yes it may take her a little longer than others to pick up some skills, but she can, does and will continue to do nearly all of the things that you and I do – often without the fear which holds us back - and I’m truely grateful that she has people around her who work very hard to enable her to be ‘just another’ sister.

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.