I Love You x


Mia is often the spokesperson for both girls

3 small words. Too often spoken. Not said enough. 

"I love you."

Our daughter Natty, Natalia, Noo Noo is very vocal, very chatty, little girl with Down's Syndrome.
She's had speech therapy over her 5 and a half years, half-heartedly from local SALT sources, (because they are under-resourced), and once a year from a UK top private therapist who visits all our local children when we've fund-raised enough to bring her down. In between it's Mummy and Daddy who provide the additional help. Thank goodness my background is in teaching...

We tell our children we love them all the time, many times a day. Natty has begun to repeat those words, copy us parrot fashion over the last 6 months.

Tonight, as I lay next to her in her crisp white, pink-dotted bed, after reading Where The Wild Things Are and acting out the comedy 'terrible roars' and 'gnashing our terrible teeth', she looked at me, squished me close and said;

"Mummy, I love you."

The perfectly articlulated sentence pierced my ears and filled my heart all at once.
My head said "Good talking Natty", but my heart melted. It crumbled, tears welled, despite my trying to hide them.  In 5 and a half years I have not heard this phrase spontaneously spoken. A phrase that I heard from Mia at around 14 months as I recall. Back then it brought tears to my eyes, when it arrived, on cue, as expected...

"Mummy sad?" asked Natty.

I bit my tongue and coughed. Smiled and squeezed her hard. Smiled like a Cheshire cat.
"Noooo, Mummy is crying because Mummy is happy" Much Makaton was used to reinforce the message.

We snuggled and I said goodnight, Daddy and I swapped children and he and Natty had their snuggles too while Mia and I read Clarice Bean together. But the lump remained in my throat.

Coming downstairs and reflecting on hearing that phrase, the phrase that all family relationships pivot around, brought the tears back. I realised that I had told myself that not hearing those words spontaneously was not an issue. It didn't matter. I had buried the feeling of wanting to hear them, smothered it in pride about Natty's other achievements, taken her hugs and kisses as supplements for the phrase itself.

Mia says it all often, draws pictures even, to show us how much she is loved, and that has always filled the void. It has more than made up for hearing the spoken phrase x2.

But at the same moment I realised that Mia is saying it less often, only when she really means it. She's 8 and has suddenly lost her chubby cheeks, replaced by racehorse legs and a bob haircut. Wanting to be at my apron strings has been filled by a desire to be an Olympic dressage rider/actor/poet. Creating some art masterpiece at 7am has become the new creeping into bed with us in the morning.

And so, in one stroke, we have a gorgeous little person realising what love is, grateful for her family and drawing us further into her intricate personality with 3 little words. And another, slightly older person, finding her wings, stable and confident in our love for her, and discovering her first footing in the world, using her family as the bow from which her arrow will spring.

That too makes me weep with tears of pride but tears of sorrow at the infant phase now lost.

This summer has been a line drawn in the sand indeed.

Read our words of love to our daughters, written in a letter at the beginning of term Mummy and Daddy Love You Both More Than Words Can Say.






The face of Disability Represented in Marketing Catalogues



The beautiful face of disability in our catalogues...

The moment has arrived, the first catalogue featuring Natty is published online and will hit doormats all over the UK next week.

For us, this is hugely significant. For the first time in history, companies are saying yes to featuring children with Down's Syndrome in their marketing material. Jojo Maman Bebe too are using a little boy called Seb as well as Natty.

Of course it is only the thin end of the wedge, we want to see children using wheelchairs in instore poster campaigns, children with other disabilities in TV adverts. We don't want any company afraid to feature our children for fear of loss of sales. We have a very long way to go, but I am proud that we are here at the start, that we are making a difference. Thank you to all the families who have sent messages of support and encouragement, as well as beautiful photos of your own children. I helps to know you are all behind us.

I hope many new parents see these happy images of two sisters simply enjoying dressing up in nice clothes and having fun together, and their fears of Down's Syndrome will be dispelled. I pray other children with disabilities will come forward to model, their confidence boosted by seeing images of positive role models in the media.

For me though, the outtakes show even more of Natty's character, that she is funny, independent and witty, not simply docile, loving and musical. So here they are...


Frugi: The Outtakes!

Looking Back, Looking Forward


You know how it is...you have a whirr of would-be blogs in your head all the time, fighting and jostling for space in your consciousness, you wait until one jumps out and demands to be written.

Bossom buddies x
Well, I've had a few of those such posts pop up in recent weeks, but, if you're a parent you will have noticed that it is the school summer holidays at the moment. Other business takes priority, like being a Mum, entertainer, guide, crafter, artist, gardener, domestic goddess, educator, swim instructor, nurse, speech therapist, physio and mediator.
I thus apologise for the lack of meaty blogging content of late, but I don't regret it... :)

Now with less than 2 weeks of precious summer break left, I'm going to sit right down and throw some thoughts onto this blog. Right here, right now.

The school year ended in mid July, and this gave me cause to reflect proudly on the achievements and hurdles that my girls had overcome. Natty, a confident little poppet with Down's Syndrome, entered mainstream school for the first time, making lots of new friends, holding her head high in the reading and numeracy stakes,  out of nappies, joining in with school lunches, PE, wake-up shake-up and (despite Mummy's neurotic fears) never once trying to escape.

Mia soared this year, happy, healthy and eager, confident on school camp, chosen for Olympic and musical events. After a worrying year last year, when the stresses of living in a temporary accommodation while we did building work on our home took its toll on her physically and emotionally.

As the term ended Her Melness Speaks got me thinking about summer holidays as markers of time with her wonderful blog post Remember?. A wonderful read, I determined at once to seize the day and make the very most of our summer together to make sure it was our best yet. And that is has definitely been.

Natty is 5 now, and for the first time I am not constantly crippled with worry about her health, either keeping her in quarantine pre or post heart op, or scared to meet up with other children for fear of the infections we would contract. Don't get me wrong, I still shun the viral soup that is those ball pit play places, but on so many levels, this summer feels as if we are back on track somehow.  There has been some hayfever, a temperature and some painful constipation, but nothing worrying (touch wood).

And so, boosted by Mel's positive take on life, and thinking about how much easier life is now that we don't have to take pushchairs and slings and breast pads and baby food and nappies and 3 types of nipple/bottom/skin cream and several changes of clothing and huge kit bags and toys and syringes for tube feeding and medication, we threw ourselves into.... SUMMER!

Family volleyball at sunset
Our secret?  Well, I made a conscious decision to let everything go except having fun and feeding the kids well. The house is a mess and I look as if I have come through several hedges backwards. The blog has been given the bare minimum of attention. I have a pile of ironing that is scraping the ceiling. There's playdoh in the bathroom mat. I found lego in my knicker drawer. The inside of my car looks like a Damien Hirst installation, BUT I have admitted that help is not an admission of failure, so once or twice a week I have invested in Jodie, our babysitter, so that I can get the food shopping done, catch up on essential admin, or even hit the sack after a run of bad nights. Bob has been working in the US, so this isn't really too much of an indulgence. (As it happens we are eligible for direct payments to cover the cost of such respite, but I haven't found time to investigate that route yet.)

We've had a whale of a time, some real hoots and quality moments. Everyone has done something they wanted to do and there haven't been too many arguments. Honestly, I've only shouted once or twice and am actually quite sad that the holidays are coming to a close.  Natty is reliably dry during the day and is now conversing happily and able to play imaginary games with Mia. Suddenly the two are playmates, bossom buddies, able to make their own games in the garden. I'm always on red alert, but I have been able to do it from a distance for the first time.

Mia has been old and wise enough to attend some fab drama and horseriding summer schools for the first time. She has come home beaming with pride at her newfound skills and independence, her beauty shining from within that place of self-worth.  Natty and I have spent hours doing puzzles, art, reading, swimming, gardening, visiting zoos, learning to pedal her tricycle, making chocolate cakes, but most of all having fun, giggling, tickling and talking, talking a lot. Her language is improving exponentially, not just sentences now, but questions, made up songs, counting, and jokes (well, if you count talking about farts at inappropriate moments a joke).

The house has been filled with extended family, cousins, grandparents, uncles, aunts, coming and going, staying from far afield, even a distant great uncle from Italy, all stamping their mark on our perfect summer.

But I am tinged with deeper sadness. Why on earth? Our friend Alicia from the US reminded me why when she said 'Hayley, freeze your kids in time at this moment. This is the best moment.'

Of course in a year or two Mia will be wanting to spend more time away with friends, her social diary ever fuller  than ours, then learning to drive and finding her feet in the world.  Boyfriends, parties, jobs, study.
I damn well hope and work towards the day that Natty will follow suit in her own way.

Natty hoses down the dry log pile!

And of course this is what we want, we are building beautiful bows right now from which to spring the arrows that are our children forward into independence, into the big wide, often ugly world, with integrity and self-belief, confidence and ambition.

But Natty has Down's Syndrome. 
Won't the rest of her summers be like this one, spent happily under my wing, a forever-child?

No.

The bow we are creating is more complex and is taking some specialist craftspeople to work on it with us, but we aim to launch that arrow in the same way as its sister one day. We'll monitor its flight path closely, put I feel sure she will fly very nicely thank you.  Maybe not as far, but all by herself.


Britmums Special Needs Round-Up has a New Editor

Britmums is obviously, well, it's Britmums, the largest network of parent bloggers in the UK.

Their Special Needs Round-up is a monthly collection of the best, most inspirational blog posts on the subject of parenting a child with additional needs to be found in the land.

I have been reading this round-up since I began blogging 8 months ago, written by the incredible Alex Ozansoy, and following many of the blogs featured on a regular basis.

How utterly astonished and amazed was I when Britmums asked me to step into Alex's shiny shoes a couple of weeks ago. What me? A relatively newbie blogger?

Well I said yes of course, I'm always one for a challenge and like a nice steep learning curve :)

I rushed out and purchased an enormous, and equally shiny, new white board and immediately began reading blogs, lots of them, and getting drawn into many of them. I spent hours and quite a few more nights than is healthy sitting up until 1am reading, highlighting, bookmarking and catgorising my favourites and filling that white board with a lovely, messy mind map that only I can decipher.

I decided to categorise the blogs into those I knew already, some new finds, some that aren't quite blogs yet but I couldn't live without, and a couple of surprises...

Please read my first Britmums Special Needs Round-up if you are looking for some inspiration, whether you are a parent, teacher or young person with an additional need.  Something Old, New, Borrowed and True

BBC Radio Cornwall Interview

Yesterday lovely Ross from BBC radio Cornwall came to the house to interview Natty and I about her modelling.

This is the first radio interview which includes Natty herself and I hope it is the start of many more to come.

I was a little nervous, as her favourite subject at the moment is farts, but instead we got a little rendition of If You're Happy and You Know It. Phew. 

Ross was a lovely interviewer and described himself as being 'fortunate to have a cousin who has Down's Syndrome'.  Yes, fortunate we are.

Click here and move cursor to exactly 1hour and 37 minutes in to listen to Natty talk about confectionary, love, being happy and modelling.


Gorgeous Models - One with Downs Syndrome

My head is spinning with fabulous blog posts that I can't quite find the time to sit down and craft at the moment: 
Breastfeeding a baby with Down's Syndrome part 2
Tips to alleviate constipation
An observation on a mother and son with Down's I met by chance in town 
The consultant that diagnosed Natty's condition at birth revisited and re-evaluated...  

They'll all have to wait. School hols and lots of lovely house guests are taking precedent, and that's how it should be. 
We blog about life, not live through our blogs, after all.


Beauty Comes in Many Forms


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

But in the meantime I'd like to share a proud little moment with you all. Seemingly frivolous perhaps, but huge for the future of Down's Syndrome, the way our children are perceived.



Today, Frugi launched their Autumn Winter '12 collection. Natty and her sister Mia are there, amongst the other beautiful models. Just 2 happy little girls having fun with others, and enjoying dressing up in pretty clothes...

Getting Natty's face into catalogues was always one branch of my idea for gently changing perceptions of Down's Syndrome, alonside the blog, media appearances and article writing. 
In one small photo, a simple shot of a girl wearing pretty clothes, lies a hugely important message. 
The message conveyed is that children with Down's Syndorme are beautiful, love gorgeous clothes, deserve to be well dressed. That they are just as important as any other child, they are capable of the same activities, enjoy life to the full, can work as clothing models, are loved by their siblings and friends. They too can woo a camera person, make a marketing team giggle and are role models for other children who see themselves represented in mainstream media for the first time.

I hope Natty has gained an immeasurable amount of confidence from being accepted as a model too. She beams from ear to ear whenever she sees her face in print.

Put simply, I hope that other beautiful small people with an extra chromosome simply look at Natty in those pages and see a girl who looks a bit like them but who doesn't really stand out at all. She is just one of the gang. She looks natural and at home amongst the others.

And that has been our family motto since the day Natty was born... she is just one of the gang.