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.
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'.