Natty's Year in Selfies: a 7 year old photographer with Down's syndrome

A NEW YEAR'S EVE POST

As I looked through the events of the past 12 months I stumbled on a set of photos that made me giggle. I decided to forget all the standard measures of the year: how have we developed as a family? Have we achieved the goals we set ourselves last New Year, personally emotionally, career wise? Has our blog/charity work/campaigning taken the direction we wanted?

Instead I looked through the eyes of our youngest daughter, Natty. She's taken enough photos of and by herself to show us what this year has really been about from her perspective, and that is after all, what this blog is all about; listening to the voice of those with Trisomy 21.

I hope you enjoy our alternative look at 2013... a year in selfies, taken by a young 6/7 year old photographer with Down syndrome.


JANUARY
We got a new puppy!



Bloggers in Woman's Own

A few weeks ago Woman's Own rang for a little interview and over Christmas an article appeared in the UK's top Woman's Magazine. I am so proud to feature in this role model section, but more importantly the piece is positive, without sensation and goes some way to changing a few more perceptions of Down's syndrome. I know it will reach new parents and I hope it helps smooth the way for them.

Have a peek this week while it's still in the shops. (Or squint and get your magnifying glass out here to scan what we have to say.)


















To read our other Down's syndrome support and advocacy articles in the media, have a look here.

Sign Rudolph the Red Nosed Reindeer with us!

Come on, join in the fun. 
Get your antlers on and sign with us to Rudolph the Red Nosed Reindeer!

(Filmed as part of the daily Makaton Charity online advent calendar. 
Thank you to Singing Hands for the backing track.)




How to make the Role of Mary your own: Natty's nativity special

Natty played Mary in the wonderfully inclusive school nativity and church Christmas services this year. This is a post that needs few words, for the pictures tell Natty's touching yet hilarious version of the nativity story by themselves...



Mary was serene...


Shine Bright Natty: Nativity Star Realisations

Star
was one of Natalia Hope's very first words. (Along with 'cake' and 'chocolate' and 'more'!)
And her name means 'birth', a December-born baby who was allowed home from hospital on Christmas Eve. The greatest gift ever imaginable.

Our little star 

loves this time of year, the lights, the twinkling, the craft activities, the gifts, the sing-along DVDs, the family and friends. She'd happily let the festivities carry on all year if she could. I wonder if you know anyone like that...?

There's so much to do, see and take part in, a veritable sensory learning paradise for many children. Of course one of the most anticipated dates in the calendar is the school play or concert, and this year Natty's class are staging a classic Nativity. Last year it was The 3 Little Penguins and Natty nose-picked, danced and grinned her way through the performance, just as her peers did, literally dressed as a star.


Last week I opened Natty's book bag and removed a slip of paper. I think it read along the lines of:



Your child, Natty
will be performing in the Christmas Nativity play
as Mary.

Please supply dark leggings and a white top.
(And bring tissues.)





At least I think that's what it said because I didn't read past the word Mary. Tears welled up in my eyes. Daddy Downs Side Up complained of dust in his eyes too. We hugged our little star and signed 'proud' through our smiles and tears and whoops of excitement.

Now everyone I have told about this says, 'Ahh how lovely.' Or, 'Oh she'll love that!' Or, 'You must be so proud'. I bet your first reaction was just that too was't it?

Yes. 
Yes. 
And yes. 

It is. 
She will. 
And we are.



The day she arrived in our lives I foolishly feared we would never step out in public again. Then there were our worries over whether she would survive heart surgery. I was afraid to love her unconditionally in case she didn't make it and it would hurt too much if I had taken that leap. We had no idea of what lay ahead, but we vowed to take one step at a time and always follow Natty's lead in what was best for her with regard to schooling and interests.

So to hold a piece of paper in my shaking hands saying that she had been asked to play the central role in the (mainstream) school production was beyond wonderful, beyond our wildest dreams. This year Natty would be the star alongside her 'typically developing' classmates. My heart was bursting out of my chest with pride. 

The part is made for Natty I must say, she gets to stand centre stage, she'll think all the applause is for her, Mary isn't a big speaking role, just a couple of precious lines that we have practised so hard that she is shouting them in her sleep, and she gets to hold a much-cherished doll throughout.

(I just hope she doesn't have a grumpy moment as she did when she played a sheep 2 years ago...)


The grumpiest nativity sheep ever?


So why then are the tears of pride stinging? 

Why are our hearts alternately singing and weighing heavy? Why do I want to add a 'but...' to your ooooohs and aaaaaahs? Why am I a little nervous of the event, fearing making an emotional fool of myself?

Because seeing Natty up there on stage, playing the most famous and gentle mother of all mothers, the Virgin Mary, lovingly holding the symbolic baby Jesus in her arms will be a very powerful and graphic reminder that our youngest daughter is unlikely to ever become a mother herself. Even if she was physically able, it wouldn't be in her best interests emotionally, for becoming independent and able to look after herself with support is our best aim. 

The day she was born I sobbed over this fact. I grieved the loss of the Grandchildren I assumed she would bring to our family. It came from some primeval place deep within my soul, a place that the head cannot rule over however logically you try to reason it out. I thought I had come to terms with the fact over the years, I can watch Natty play with dolls now without her words 'Look at my baby', sending me rushing for my sunglasses. But I realise, sitting here with tear-stained cheeks after driving home from school releasing chest-deep sobs alone in the car, that I am far, far from that place.

Now, Natty's fairy Godmothers don't have any children. Her Great Cousin doesn't have any offspring. One of my dearest former colleagues cannot bear the thought of reproducing. 
But for all of them it was a lifestyle choice, a decision that they made.

My oldest chum and her partner were unable to conceive and have just adopted a gorgeous little boy after years of heartache. Having children isn't the be all and end all in life, but if you want them and are denied that privilege it takes a lot of soul searching to come to terms with that fact. It's a loss, an empty void, that is hard to fill.

And one day we will have to have that heart-breaking conversation with Natty, who may or may not understand the whys and wherefores. 
We will have to explain to a young woman who loves babies, that she cannot become a mother, as her elder sister is likely to.
I hope the realisation doesn't crush her.

Perhaps she will fill her life in other ways, get a job in a childcare capacity, or maybe it will never cross her mind to be a mother and I am overthinking the whole thing. It's all a long way off and I don't know any of the answers yet. I don't even know what all the questions are. I will look to the families I know and respect who have led the way for advice and support.

I do know we will have to turn being an aunty (which she and Mia are already) into an important and valued starring role, just as we view motherhood.

Aunty Natty teaches nephew Baby Max to say 'Oooo'.



So if you see me sobbing in a village hall at 6pm tomorrow evening, please excuse me. You now know it's not because I am over proud or pathetically pushy or super soppy. 
You'll know it's because I am taking in and assimilating all of Natalia's unique star qualities





See the photos taken during the nativity performance here. 
It was 'alright on the night' as they say. 






Welcome to the World Precious Baby Porter


I came across the wonderful Porter family on Twitter a couple of weeks before their second daughter Kara was born. Kara has Down syndrome and her parents were prepared for this before she arrived in their world. I was immediately struck by the calm excitement, love and pride that already emanated from her parents before her arrival. I thought back to our shaky beginnings with Natty in our lives, a sharp contrast to their experience and I felt nothing but admiration and respect for these wonderful new parents. They had felt and overcome their shock and grief antenatally and were ready to welcome this beautiful daughter with open arms, one of the 6% of babies with Down syndrome who are not terminated or miscarried during pregnancy. 

I waited anxiously for new tweets after the news that labour had begun, I held them in my thoughts, conscious of the flagged heart and digestive problems. I was overjoyed to see the first new pictures of the beautiful and perfect little bundle when she made her debut appearance. Many of you joined in sending your congratulations. Kara is doing brilliantly, feeding and home safe and sound where she is getting to know her older sister Eloise. I am delighted that Craig and Sara have kindly agreed to write and share their story with Downs Side Up readers, despite that early baby haze of exhaustion that we all find ourselves in.

H x







Wow no wires!

"I am currently covered in bits of food, trying to organise my living room despite toys, books and a changing mat. I am tired after broken sleep and cluster feeding a new born baby. This is the typical scene any parent can recognise - those first few weeks always seem to last forever. Kara is sleeping in her moses basket and Eloise my eldest is settling down to bed. We should not be here - it should not be like this.

Kara is a baby with Downs  - one of the 750 children born each year and one of the very few that are not terminated from the result from the Nuchal scan at thirteen weeks. We also had an amniocentesis. 

There is a passage in Wolf Hall from which describes how Cromwell feels when the ceiling crashes in - that is the nearest reaction I can give when you hear the results. I remember the shock, the question - Why? I was 37 but not that old, I did not smoke and was fairly healthy. What did this mean ? How could I have a disabled child ? What about my eldest child ? What about my life? The fetal medicine team were amazing - they explained all my options. I could not think - it was like a cloud of grief. We elected to have scans - and to research this to the nth degree. 

I called people who had children who had T21 , scoured the internet trying to assess what this  meant. I asked advice of friends, relatives, experts. The Downs Syndrome Association hand out huge packs of information at the hospital. I read, examined and weighed up all the options. A couple of things made me think - my Granny just turned round and said " The child will never lack friends" and a very close friend stated it very clearly "Its going to look a bit different and it will learn at a slower pace".  I just felt that this child had a right to life and from the scans it looked like a baby.


Its not been plain sailing - heart defects were detected and so were digestive issues. We were prepared to have child in neonatal with tubes sticking out at all angles. But it was not like that. The birth was quick and normal - (it hurts). Straight away Kara breast fed. She sleeps well and hates to be cold. She cries less than other babies so you have to read her but she is feeding so well. Her heart defects had healed, there was no digestive problems and she is hearing like any normal baby. So as I explained at the beginning we really should not be here and I am going to grab five minutes to have a lovely long bath."

Sara Porter