[Music]
my tis a very personal and often
emotional story but it’s actually a
really ordinary story – and one whose
threads I think might be shared by some
of you here today 11 years ago I was
expecting our second much wanted baby
the one we’d imagined in our minds eye
and who’d clung to pregnancy as sadly
several before her had not with big
sister Mia we toddled and waddled around
talking about the baby in mommy’s tummy
what an amazing big sister she was going
to be and washing and folding tiny
clothing in anticipation
we didn’t care what the sex of the baby
was as long as it was healthy and in our
naivety we thought that was all that was
important
scans expensive multivitamins and a
doula on standby had quite literally
bought us the peace of mind we thought
we needed two weeks before her Christmas
to date youngest decided to make an
early appearance so we calmly put into
place our plans for a home birth Mia
went to stay with her beloved godmother
and my husband Bob set about warming our
drafty whole old house and for some
reason covering all the furniture in
industrial plastic sheeting I noticed a
wave was expecting some kind of baby
cannon I think warm words of
encouragement welcomed our newborn onto
a nest of pillows she was born easily
all at once but floppy silent and blue
there was immediate
tangible sense of panic from the medical
professionals in the room but actually
looking back I think maybe that was more
a sense of urgency an emergency my mind
shut down completely or my husband went
out into the freezing December Lane in
his shorts to wait for the ambulance
he’d been instructed to call it wasn’t
just his breath that froze that morning
time to Stood Still as he waited for
that medical assistance to arrive not
knowing whether his newborn was clinging
to life inside the family home on
arrival at the hospital he carried her
proudly in from where she was taken away
to the neonatal intensive care unit he
insisted on staying nearby while I was
left in a side room to recover with our
doula I very quickly began to realize
that I was being avoided not completely
midwives were floating through my space
engaging in that kind of jovial small
talk and wearing that kind of smile that
people wear when they feel sorry for you
or when they’re preparing themselves to
tell you some unexpected news it had to
be bad news as time ticked on the
urgency became greater and I began to
desperately ask question after question
where was my baby could I see my husband
what was happening was she alive and
after an eternity which was I think
close to around five hours and I had
reached panic stage my husband and I
were rejoined in that clinical maternity
room distant and far removed from our
baby
a consultant came into the room and
nervously and formally uttered the words
we’d dared not allow ourselves to
contemplate I’ve looked at your baby and
I think she has down syndrome
our midwife cried a congenital heart
condition was later identified which was
in actual fact the cause of her early
fragility my body shut my brain shut
down and my body went into physical
shock
but my mind went into overdrive had I
missed a vital supplement was it my age
or maybe those shell on prawns for I’d
eaten it had to be my fault I
immediately wondered what the impact
would be on Mir would her daddy leave us
would we ever have a family holiday
again would natty ever marry or even go
to school
my ablest subconscious had completely
taken over I think it’s really important
to pick apart exactly why I felt that
all-consuming fear that day where this
one-size-fits-all stereotype had come
from you see I think we all have created
a tragic myth with a central character
called Down’s there in the medical
professionals who tell us they’re sorry
when they give us a risk factor of our
babies having Down syndrome
a condition they like to list as a list
of medical characteristics which they
cheerfully refer to as comorbidities
then there are we women who when
pregnant passed the baton of fear from
one to the other without any real lived
experience whatsoever as society tends
to either pity patronize or punish those
with a disability and our mainstream
media refer to Down syndrome as being
akin to a cancer to be eradicated and in
my case I have the distant and slightly
unsure memory of my grandmother
Gladys taking me by the hand at about
the age of five and steering me firmly
across the road as she saw a young man
with Down syndrome and his mother walked
towards us their heads bent in
realization of what was happening he’s
not quite all there she whispered to me
you see words shape our thinking and the
picture portrayed for me was certainly
one of no hope not because of an
additional chromosome but because of her
constrictive narrative built up around
that a safety net was immediately thrown
around us by those who cared not the
people who told me that only special
people receive special babies or that
God wouldn’t have given me any more than
I could handle
neither though
who showed me very quickly that Down
syndrome is a condition that absolutely
everybody has an opinion about and you
are going to hear their outdated nuggets
of misinformation within the first few
weeks of your baby’s life whether you
want to or not I can give you countless
examples but these two exemplify the
most common themes all this so musical
loving aren’t they I wish I had one I
often wonder if that person has ever
heard natty saying now and whether she
got herself a puppy and the comment that
really stung the most from a pregnant
acquaintance pointing to nutty in her
pushchair and proudly announcing to me
I’m having all the tests going you know
because I wouldn’t have time for one of
them no I digress the safety net was
those mentors such as parents further
along the journey than us who told us
they were there for us that everything
would be okay our family such as my
brother in the front row here who drove
through the night with my mom to be with
us and to see the new arrival friends
who pitched up on our doorstep with food
to cook us a hearty meal when we didn’t
feel like eating at all and to celebrate
our baby’s arrival the medics who not
only made nutty strong and well but let
us know that we were up to the job of
being her parents that we’d got this
usually during late-night chats over
mugs of milky tea and of course our
greatest educators of all
we’re Mia and Nattie themselves Natalya
hope as we decided to call her these two
small girls broke apart the fear and
replaced it with oodles of love fun
pride and acceptance they had absolutely
no idea of the stigma attached to
nutty’s genetic make up the words held
no meaning for them their bond was
immediate and Mia’s only question at two
was when her baby sister was coming home
so we could birth her together for the
first time and so while I was trying to
map out nutty’s entire life in her first
weeks of being in our world they were
just taking each moment as it came
together we’ve learnt that Down syndrome
is just one aspect of what makes Nattie
the unique individual she is but for her
it means beauty as a baby people would
cross the street literally to come and
have a closer look at this baby who
looked like a china doll and she grew up
and flourished and became the UK’s first
model with a disability to appear in a
national supermarket back-to-school
campaign she’s caring instinctively
sa-do’s she has a radar for people that
need a bit of nutty once going up to a
lady in a doctor’s waiting room laying
her hands on her knees looking her in
the face and saying it’s okay lady that
lady told me in the car park afterwards
that she was going through cancer
treatment nutty is fiercely determined
in fact her favorite phrases I do it by
myself
she’s had to work harder and a little
bit longer to reach those milestones
like walking talking learning to ride
her bike and this summer having a go at
scuba diving but what she has soon as
this that when there’s an obstacle in
her way she’ll just find a way around it
so before she could say I love you at
bedtime she worked out a little fray
assigned phrase which means you happy me
she’s also brutally honest too with
often hilarious and embarrassing
consequences so a couple of years ago we
took her to meet some former colleagues
and she met this lovely lady and said I
love your breasts dress it’s a lovely
dress isn’t it naughty I love your dress
too it’s a great as she said dress no
mommy I said I liked your breasts there
have been challenges of course Nattie
underwent corrective heart surgery at
the age of two the single most
terrifying time of our lives
she’s a little small for her age and she
needs support when communicating but
what this young lady has shown us is
that nothing will stop her from being
the very best she can be
if given the right opportunities and
when the limits in other’s minds are
lifted this makes me reassess what it is
we value in one another
why is it that the ability to pass exams
with flying colors is so much more
prized than the ability to make a room
this size erupt with laughter with a
funny face and a well-timed purposeful
fart
which I’m not going to demonstrate
surely in the perfect blend each should
be equally revered and valued what
frightens me most is that I might not
have had the privilege of being the mom
to such an incredible young lady because
this might not have been what I chose to
sign up for and I wish that grammar
GLaDOS had lived to meet her I know
she’d have boasted to all who’d listen
about each of her great grandchildren’s
achievements and their photographs would
have been proudly displayed on her
living room wall but I know something
for certain I know that natty would have
taught her not to fear those on the
other side of the road thank you
you
[Applause]
my tis a very personal and often
emotional story but it’s actually a
really ordinary story – and one whose
threads I think might be shared by some
of you here today 11 years ago I was
expecting our second much wanted baby
the one we’d imagined in our minds eye
and who’d clung to pregnancy as sadly
several before her had not with big
sister Mia we toddled and waddled around
talking about the baby in mommy’s tummy
what an amazing big sister she was going
to be and washing and folding tiny
clothing in anticipation
we didn’t care what the sex of the baby
was as long as it was healthy and in our
naivety we thought that was all that was
important
scans expensive multivitamins and a
doula on standby had quite literally
bought us the peace of mind we thought
we needed two weeks before her Christmas
to date youngest decided to make an
early appearance so we calmly put into
place our plans for a home birth Mia
went to stay with her beloved godmother
and my husband Bob set about warming our
drafty whole old house and for some
reason covering all the furniture in
industrial plastic sheeting I noticed a
wave was expecting some kind of baby
cannon I think warm words of
encouragement welcomed our newborn onto
a nest of pillows she was born easily
all at once but floppy silent and blue
there was immediate
tangible sense of panic from the medical
professionals in the room but actually
looking back I think maybe that was more
a sense of urgency an emergency my mind
shut down completely or my husband went
out into the freezing December Lane in
his shorts to wait for the ambulance
he’d been instructed to call it wasn’t
just his breath that froze that morning
time to Stood Still as he waited for
that medical assistance to arrive not
knowing whether his newborn was clinging
to life inside the family home on
arrival at the hospital he carried her
proudly in from where she was taken away
to the neonatal intensive care unit he
insisted on staying nearby while I was
left in a side room to recover with our
doula I very quickly began to realize
that I was being avoided not completely
midwives were floating through my space
engaging in that kind of jovial small
talk and wearing that kind of smile that
people wear when they feel sorry for you
or when they’re preparing themselves to
tell you some unexpected news it had to
be bad news as time ticked on the
urgency became greater and I began to
desperately ask question after question
where was my baby could I see my husband
what was happening was she alive and
after an eternity which was I think
close to around five hours and I had
reached panic stage my husband and I
were rejoined in that clinical maternity
room distant and far removed from our
baby
a consultant came into the room and
nervously and formally uttered the words
we’d dared not allow ourselves to
contemplate I’ve looked at your baby and
I think she has down syndrome
our midwife cried a congenital heart
condition was later identified which was
in actual fact the cause of her early
fragility my body shut my brain shut
down and my body went into physical
shock
but my mind went into overdrive had I
missed a vital supplement was it my age
or maybe those shell on prawns for I’d
eaten it had to be my fault I
immediately wondered what the impact
would be on Mir would her daddy leave us
would we ever have a family holiday
again would natty ever marry or even go
to school
my ablest subconscious had completely
taken over I think it’s really important
to pick apart exactly why I felt that
all-consuming fear that day where this
one-size-fits-all stereotype had come
from you see I think we all have created
a tragic myth with a central character
called Down’s there in the medical
professionals who tell us they’re sorry
when they give us a risk factor of our
babies having Down syndrome
a condition they like to list as a list
of medical characteristics which they
cheerfully refer to as comorbidities
then there are we women who when
pregnant passed the baton of fear from
one to the other without any real lived
experience whatsoever as society tends
to either pity patronize or punish those
with a disability and our mainstream
media refer to Down syndrome as being
akin to a cancer to be eradicated and in
my case I have the distant and slightly
unsure memory of my grandmother
Gladys taking me by the hand at about
the age of five and steering me firmly
across the road as she saw a young man
with Down syndrome and his mother walked
towards us their heads bent in
realization of what was happening he’s
not quite all there she whispered to me
you see words shape our thinking and the
picture portrayed for me was certainly
one of no hope not because of an
additional chromosome but because of her
constrictive narrative built up around
that a safety net was immediately thrown
around us by those who cared not the
people who told me that only special
people receive special babies or that
God wouldn’t have given me any more than
I could handle
neither though
who showed me very quickly that Down
syndrome is a condition that absolutely
everybody has an opinion about and you
are going to hear their outdated nuggets
of misinformation within the first few
weeks of your baby’s life whether you
want to or not I can give you countless
examples but these two exemplify the
most common themes all this so musical
loving aren’t they I wish I had one I
often wonder if that person has ever
heard natty saying now and whether she
got herself a puppy and the comment that
really stung the most from a pregnant
acquaintance pointing to nutty in her
pushchair and proudly announcing to me
I’m having all the tests going you know
because I wouldn’t have time for one of
them no I digress the safety net was
those mentors such as parents further
along the journey than us who told us
they were there for us that everything
would be okay our family such as my
brother in the front row here who drove
through the night with my mom to be with
us and to see the new arrival friends
who pitched up on our doorstep with food
to cook us a hearty meal when we didn’t
feel like eating at all and to celebrate
our baby’s arrival the medics who not
only made nutty strong and well but let
us know that we were up to the job of
being her parents that we’d got this
usually during late-night chats over
mugs of milky tea and of course our
greatest educators of all
we’re Mia and Nattie themselves Natalya
hope as we decided to call her these two
small girls broke apart the fear and
replaced it with oodles of love fun
pride and acceptance they had absolutely
no idea of the stigma attached to
nutty’s genetic make up the words held
no meaning for them their bond was
immediate and Mia’s only question at two
was when her baby sister was coming home
so we could birth her together for the
first time and so while I was trying to
map out nutty’s entire life in her first
weeks of being in our world they were
just taking each moment as it came
together we’ve learnt that Down syndrome
is just one aspect of what makes Nattie
the unique individual she is but for her
it means beauty as a baby people would
cross the street literally to come and
have a closer look at this baby who
looked like a china doll and she grew up
and flourished and became the UK’s first
model with a disability to appear in a
national supermarket back-to-school
campaign she’s caring instinctively
sa-do’s she has a radar for people that
need a bit of nutty once going up to a
lady in a doctor’s waiting room laying
her hands on her knees looking her in
the face and saying it’s okay lady that
lady told me in the car park afterwards
that she was going through cancer
treatment nutty is fiercely determined
in fact her favorite phrases I do it by
myself
she’s had to work harder and a little
bit longer to reach those milestones
like walking talking learning to ride
her bike and this summer having a go at
scuba diving but what she has soon as
this that when there’s an obstacle in
her way she’ll just find a way around it
so before she could say I love you at
bedtime she worked out a little fray
assigned phrase which means you happy me
she’s also brutally honest too with
often hilarious and embarrassing
consequences so a couple of years ago we
took her to meet some former colleagues
and she met this lovely lady and said I
love your breasts dress it’s a lovely
dress isn’t it naughty I love your dress
too it’s a great as she said dress no
mommy I said I liked your breasts there
have been challenges of course Nattie
underwent corrective heart surgery at
the age of two the single most
terrifying time of our lives
she’s a little small for her age and she
needs support when communicating but
what this young lady has shown us is
that nothing will stop her from being
the very best she can be
if given the right opportunities and
when the limits in other’s minds are
lifted this makes me reassess what it is
we value in one another
why is it that the ability to pass exams
with flying colors is so much more
prized than the ability to make a room
this size erupt with laughter with a
funny face and a well-timed purposeful
fart
which I’m not going to demonstrate
surely in the perfect blend each should
be equally revered and valued what
frightens me most is that I might not
have had the privilege of being the mom
to such an incredible young lady because
this might not have been what I chose to
sign up for and I wish that grammar
GLaDOS had lived to meet her I know
she’d have boasted to all who’d listen
about each of her great grandchildren’s
achievements and their photographs would
have been proudly displayed on her
living room wall but I know something
for certain I know that natty would have
taught her not to fear those on the
other side of the road thank you
you
[Applause]
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