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