Living Life to the Full

This article first appeared in the May '12 issue of Learning Disability Practice.


Natty is living life to the full


Living Life To The Full

Hayley Goleniowska was initially devastated to learn her baby had Down's syndrome, but Natty is reaching her full potential and has taught her parents a lot about what the condition really means.


I am the proud Mother of 2 gorgeous, confident, funny and popular girls.  The youngest, Natty, also has Down’s Syndrome.

All I could think when she was born was ‘This isn’t what I signed up for.  This is not what I want.’  But of course, I had no idea what ‘this’ really was.  

As Natty’s 5th birthday approached, my thoughts turned to the crisp, sun-blessed December days just before her arrival when Mia and I planted bulbs together, enjoying every moment of Mummy and first-born alone time that would never be repeated in quite the same way. 

This was the time before our lives changed forever, the blissfully ignorant, arrogantly complacent time before we understood what life was really all about.  When we shrugged off a 1/297 nuchal fold 'risk' (we now say 'chance' or 'liklihood') of having a baby with Down’s Syndrome as ‘not bad for my age’, (35) and clung to the notion that a healthy, clean-living, vitamin-taking woman would, of course, be expecting another healthy baby.


Diagnosis

She came early, as I felt she would.  2 weeks to be precise, typical for babies with Down’s Syndrome.  The natural home birth was calm and straightforward.  But a small, silent, blue baby was born, all in one easy movement.

What followed is frozen in time. 
The look of desperation on the midwife’s face while my husband waited in shorts in a freezing lane for the ambulance.

Jovial paramedics administering oxygen and helping me to the ambulance.

The midwife repeatedly telling me how beautiful she was as I held the oxygen to her face, a face I could not warm to, could not recognise as being my own baby’s. Hindsight brings sharply into focus that all these professionals instantly knew that Natty had Down’s syndrome, but none of them could, or would, tell us.

Specialist Care 

On arrival at the hospital, our baby was quickly taken from us to SCBU and we were ushered into a side room.  I insisted that my husband stay at the baby’s side while staff worked on her.  Bob still cannot talk to me about exactly what he witnessed and felt during the next 4 hours, save that on several occasions he can recall the code ‘DS’ being used. 

But a strange thing happens when you are faced with your worst nightmare.  You dare not welcome it in.  You dare not let your brain begin to work out that DS of course means Down’s syndrome.  You absolutely will not let your head formulate a question to ask what is wrong, because you are terrified of the answer.  If you don’t ask, it won’t happen. 

I was given no explanation of what was happening and I began to feel that I was being avoided.  The panic rose. 

Finally my husband returned with a smartly-dressed consultant who delivered his pre-diagnosis of Down’s syndrome.  No-one will ever fondly remember the delivery of unexpected news like this, but it felt too formal and too distant.  Too much, too soon and overwhelmingly tragic.  Talk of leaflets, a poem about Holland and meeting a nurse with a daughter with Down’s, and the addage that ‘some of them even go to mainstream school.’   

Our community midwife cried with us.

I wanted to scream at him, make him and what he was saying vanish, but I could not speak.  He asked me if I had suspected.  I nodded.  My core being had known all along.  And all of this was done while ‘she’ lay in a distant incubator in SCUBU.

I now understand the angst of those around me too, for medical professionals are also only human.  But looking back, a gentle word of warning from a familiar friendly face might have taken the sting out of the thunderbolt.
She was our beautiful but vulnerable daughter first, with her fabulous, exciting life ahead of her.  But telling us she had Down’s syndrome amid tears and ‘sorries’ while she was out of sight and reach, meant that she became Downs’ syndrome Personified.  My ignorance made her a frightening sum of all my stereotypes based on outdated glimpses into the lives of strangers with the condition, and the negative language and assumptions used by many in the medical profession compounded that.


Medical Support

Key medical ‘angels' then came to the fore.  The people whose faces and voices remain, whose influences are still felt in our hearts, yet whose names are long forgotten.  Those who made us decide that our lives were far from over and that we would make certain both girls reached their full potential.
The gently persuasive Sister who encouraged us to gradually look at, then touch and finally hold Natty.
The kind nurse with a daughter with Down’s syndrome willing to share a family photo album with us.
The Junior Doctor who announced that he just knew we would be ambassadors for children like Natty one day.
The Midwife who wisely told me that my baby need my love whether she lived or died.
The GP, whose grandson has Down’s syndrome. A no-nonsense man who welcomed her into his arms and coined her nickname Natty.
Knowing Health Visitor no.2 (Insensitive no.1 was quickly bypassed) who had a child with a disability herself, who just ‘got it’.
The calm breastfeeding specialist who guided us through 3 tube-fed, milk-expressing months until Natty finally succeeded for herself.


The Future

Natty won our hearts, grew stronger, survived heart surgery and flourished, as her father always predicted.  Her doting sister developed into a senitive, caring, intuitive young lady, due to, not in spite of, her sibling's disability.  I began writing my blog, Downs Side Up, to offer support and encouragement to professionals and parents alike, for I know many of my initial fears were based in ignorance. Natty is now an ambassador for Down’s Syndrome in her own right, lighting rooms wherever she goes, smashing stereotypes, and even doing clothes' modelling and making advertising more inclusive.
She lives and loves life to the full and shouts out that Down’s syndrome is beautiful and not to be feared.  It is different, it can be unexpected, but it is never bad news, it is never a 'risk'. 



Natty Misses her Big Sister Mia

Mia and Natty are separated for the first time when Mia goes on school camp. But Natty doesn't like it one bit... 


Strong sisterly bond, right from the start

When I was warm and safe inside Mummy's tummy, Mia's was the voice I heard the most.  

More distant than Mummy's, but always there in the background. Sometimes sing-songing, sometimes loud, a tantrum, often laughing, whining or crying, asking questions, talking to Mummy or Daddy, reading a book, whispering to Huggy her teddy.  I often heard music too, shakers, xylophone, castinets, the same song over and over 'Girl, Put Your Records On', or a tune from TV programmes that I now enjoy too.

My favourite times were when she put her mouth close to my warm tummy house, and whispered straight to me, into my ear.  

She told me she loved me, even before she saw me.  
She would tell me what she was eating for tea, and Mummy would pretend I was clapping her when she ate her vegetables. I was doing exactly that of course. 
Then she would hug me by rubbing Mummy's tummy. Tickly.

When I was born, I was a bit tired and not very well. Mia's voice was the only one I could muster the energy to turn my head for. I needed to open my eyes to see her, my beautiful sister who had loved me from the beginning.

Since then, we have been together every single day.  Not all of everyday, but always a part of it.  Even when I was having my heart fixed, she came to be by my side. 

She helps me. Sometimes she gets me dressed or takes me to wash my hands. She reads me stories, and draws amazing pictures. I annoy her at times, but I don't really mean it.  Then she walks away from me and I cry.  We always cuddle on the sofa afterwards though.

I help her too. I hug her when she is sad. I share my dinner with her. I make her giggle with my silly faces and funny noises. I show her little things she has missed, like a daisy in the grass of a bird in a tree. Mia says she wants me to live with her when we are grown up. That might be fun, but I might have others plans.

Today, Mia isn't here. 
I ate my tea with Mummy and Daddy but she wasn't there to kick under the table. 
I had my bath and she wasn't there to splash me.  She didn't wrap me in a fluffy towel afterwards.
She wasn't around to bounce on the bed in our pyjamas which Mummy hates.
I wondered if she was playing hide and seek, but she wasn't in any of our best hiding places.

I kept asking Mummy where she was. 
Mummy said she was on a little school holiday. But she surely can't go on holiday without the rest of us! I asked Mummy if Mia was on a beach with sand.  Mummy laughed and said no.  So where is Mia? Mummy said she was in a big place like a school with all her friends and teachers. Why? (Handily, they have just taught me these question words, so I was putting them to good use.) Mummy said she was learning lots of things on a school trip and that she would be home soon. I bit like when my class visited a farm, only her class were sleeping away from home.

I cried. I cried really hard, and just to make sure Mummy understood, I said that I was sad, that I was crying and that I was missing Mia. I wanted my sister to kiss me goodnight.  I wanted to know she was in bed nearby me. Mummy put Mia's nightlight on so it seemed as if she was there in bed, and gave me one of her teddies to hold while I slept.  It smelt of her but it wasn't the same. Mummy held me until I fell asleep, tired from crying. It was nice, but tonight, I wanted my sister to kiss me goodnight more than anything else in the world.