I was born here in this city my father’s family is from here so long as my home
family is from here so long as my home
family is from here so long as my home and today I am here with all of you to
and today I am here with all of you to
and today I am here with all of you to share an idea to have a conversation
share an idea to have a conversation
share an idea to have a conversation about something I am passionate about
about something I am passionate about
about something I am passionate about first of all though have you ever played
first of all though have you ever played
first of all though have you ever played stuck in the mud in this game everyone
stuck in the mud in this game everyone
stuck in the mud in this game everyone is running around and there are someone
is running around and there are someone
is running around and there are someone whose job it is to take people and when
whose job it is to take people and when
whose job it is to take people and when they attacked they had to stand still
they attacked they had to stand still
they attacked they had to stand still with their legs apart stuck and so
with their legs apart stuck and so
with their legs apart stuck and so someone who is still free can scramble
someone who is still free can scramble
someone who is still free can scramble underneath the leaks and this frees them
underneath the leaks and this frees them
underneath the leaks and this frees them to run and join back in the game have
to run and join back in the game have
to run and join back in the game have you ever felt like that
you ever felt like that
you ever felt like that stuck in mud stuck in life as though you
stuck in mud stuck in life as though you
stuck in mud stuck in life as though you are unable to participate join in and
are unable to participate join in and
are unable to participate join in and feel the freedom that those around you
feel the freedom that those around you
feel the freedom that those around you to look like they’re experiencing I’ve
to look like they’re experiencing I’ve
to look like they’re experiencing I’ve felt like that throughout my life
felt like that throughout my life
felt like that throughout my life I was born with my hearts on the outside
I was born with my hearts on the outside
I was born with my hearts on the outside of my chest yes it’s still on the
of my chest yes it’s still on the
of my chest yes it’s still on the outside of my body beating a little bit
outside of my body beating a little bit
outside of my body beating a little bit quickly at the moment underneath my
quickly at the moment underneath my
quickly at the moment underneath my clothes I was also born with clubs feats
clothes I was also born with clubs feats
clothes I was also born with clubs feats and yes they are still club feet which
and yes they are still club feet which
and yes they are still club feet which proved to make walking difficult medical
proved to make walking difficult medical
proved to make walking difficult medical professionals describes my heart
professionals describes my heart
professionals describes my heart condition as ectopia cordis and further
condition as ectopia cordis and further
condition as ectopia cordis and further issues within my heart
issues within my heart
issues within my heart tetralogy a fellow a left-to-right shunt
tetralogy a fellow a left-to-right shunt
tetralogy a fellow a left-to-right shunt a hole in my heart and most Aminah death
a hole in my heart and most Aminah death
a hole in my heart and most Aminah death within the first day of my life standing
within the first day of my life standing
within the first day of my life standing before you
before you
before you a 37 year old woman alive and well
a 37 year old woman alive and well
a 37 year old woman alive and well [Applause]
[Applause]
[Applause] [Music]
and I am living out the idea of this
and I am living out the idea of this conversation today that stuck doesn’t
conversation today that stuck doesn’t
conversation today that stuck doesn’t mean today I am the only person living
mean today I am the only person living
mean today I am the only person living here in New Zealand with this extremely
here in New Zealand with this extremely
here in New Zealand with this extremely rare condition being born with my heart
rare condition being born with my heart
rare condition being born with my heart hanging on the outside of my chest
hanging on the outside of my chest
hanging on the outside of my chest totally exposed shocked everyone I was
totally exposed shocked everyone I was
totally exposed shocked everyone I was placed in an incubator and rushed to
placed in an incubator and rushed to
placed in an incubator and rushed to Green Lane hospital and Auckland my
Green Lane hospital and Auckland my
Green Lane hospital and Auckland my parents were told to prepare for the
parents were told to prepare for the
parents were told to prepare for the phone call that would tell them I had
phone call that would tell them I had
phone call that would tell them I had died skin was grafted from my leg and
died skin was grafted from my leg and
died skin was grafted from my leg and placed on my heart nothing else was done
placed on my heart nothing else was done
placed on my heart nothing else was done my chest cavity is not properly formed
my chest cavity is not properly formed
my chest cavity is not properly formed and so operating to try and put my heart
and so operating to try and put my heart
and so operating to try and put my heart back inside my chest would not be
back inside my chest would not be
back inside my chest would not be possible in highly risky for nine months
possible in highly risky for nine months
possible in highly risky for nine months I was there in Auckland away from my
I was there in Auckland away from my
I was there in Auckland away from my family
family
family my mother would commute once a week from
my mother would commute once a week from
my mother would commute once a week from Tauranga to Auckland to come and visit
Tauranga to Auckland to come and visit
Tauranga to Auckland to come and visit me and on that day I was a good girl and
me and on that day I was a good girl and
me and on that day I was a good girl and so my parents were ready to take me home
so my parents were ready to take me home
so my parents were ready to take me home they were told by some family members
they were told by some family members
they were told by some family members she is a curse for everything you’ve
she is a curse for everything you’ve
she is a curse for everything you’ve ever done wrong you should put her in a
ever done wrong you should put her in a
ever done wrong you should put her in a home and forget that she exists my
home and forget that she exists my
home and forget that she exists my appearance to fight those people because
appearance to fight those people because
appearance to fight those people because of a strong conviction that I had been
of a strong conviction that I had been
of a strong conviction that I had been born and given life for a purpose they
born and given life for a purpose they
born and given life for a purpose they had encountered faith in God and they
had encountered faith in God and they
had encountered faith in God and they raised me in this faith too which has
raised me in this faith too which has
raised me in this faith too which has secured me in the FIR cook times I
secured me in the FIR cook times I
secured me in the FIR cook times I walked at the age of four and started
walked at the age of four and started
walked at the age of four and started school at five so family members again
school at five so family members again
school at five so family members again saying you should put her in a special
saying you should put her in a special
saying you should put her in a special school because she’s probably dumb I
school because she’s probably dumb I
school because she’s probably dumb I went to a regular primary school wearing
went to a regular primary school wearing
went to a regular primary school wearing a fiberglass shield that strapped around
a fiberglass shield that strapped around
a fiberglass shield that strapped around my chest
my chest
my chest underneath my clothes that had to be
underneath my clothes that had to be
underneath my clothes that had to be bigger to stretch over I also wore
bigger to stretch over I also wore
bigger to stretch over I also wore calipers strapped around my legs and I
calipers strapped around my legs and I
calipers strapped around my legs and I had specially built shoes made at the
had specially built shoes made at the
had specially built shoes made at the hospital no not the most flattering
hospital no not the most flattering
hospital no not the most flattering ensemble all topped off with a pink bag
ensemble all topped off with a pink bag
ensemble all topped off with a pink bag because I am the only girl and my family
because I am the only girl and my family
because I am the only girl and my family and naturally everything I owned was
and naturally everything I owned was
and naturally everything I owned was pink and five years old I quickly
pink and five years old I quickly
pink and five years old I quickly learned that I was physically slower
learned that I was physically slower
learned that I was physically slower than other kids look different to other
than other kids look different to other
than other kids look different to other kids could not do some of the things
kids could not do some of the things
kids could not do some of the things like other kids I could not understand
like other kids I could not understand
like other kids I could not understand why I was so different what was wrong
why I was so different what was wrong
why I was so different what was wrong with me and why couldn’t it be fixed why
with me and why couldn’t it be fixed why
with me and why couldn’t it be fixed why did kids tell me I was a freak or ugly
did kids tell me I was a freak or ugly
did kids tell me I was a freak or ugly or slow going out in public people would
or slow going out in public people would
or slow going out in public people would point and steer shopkeepers would accuse
point and steer shopkeepers would accuse
point and steer shopkeepers would accuse me of stealing things and putting them
me of stealing things and putting them
me of stealing things and putting them inside my Jersey like a shopkeeper in a
inside my Jersey like a shopkeeper in a
inside my Jersey like a shopkeeper in a fruit shop one stood when she asked me
fruit shop one stood when she asked me
fruit shop one stood when she asked me to put that Apple I had under my Jersey
to put that Apple I had under my Jersey
to put that Apple I had under my Jersey back on the Shelf lease she didn’t
back on the Shelf lease she didn’t
back on the Shelf lease she didn’t believe me or my mother when we both
believe me or my mother when we both
believe me or my mother when we both told her that in fact it was my heart so
told her that in fact it was my heart so
told her that in fact it was my heart so I had to pull up my Jersey and show her
I had to pull up my Jersey and show her
I had to pull up my Jersey and show her my heart in the middle with the fruit
my heart in the middle with the fruit
my heart in the middle with the fruit shop she got a fright and began offering
shop she got a fright and began offering
shop she got a fright and began offering me all this free fruits
me all this free fruits
me all this free fruits and I thought to myself me I could use
and I thought to myself me I could use
and I thought to myself me I could use this
[Applause]
[Applause] it seemed everywhere I went people were
it seemed everywhere I went people were
it seemed everywhere I went people were curious about me or afraid of me and I
curious about me or afraid of me and I
curious about me or afraid of me and I grew frustrated at my limits of body in
grew frustrated at my limits of body in
grew frustrated at my limits of body in these stupid leagues that would have
these stupid leagues that would have
these stupid leagues that would have moved the way I wanted them to by the
moved the way I wanted them to by the
moved the way I wanted them to by the age of 10 I had decided it was too hot I
age of 10 I had decided it was too hot I
age of 10 I had decided it was too hot I and I sought a way out I wanted to end
and I sought a way out I wanted to end
and I sought a way out I wanted to end my life and I went into the bathroom and
my life and I went into the bathroom and
my life and I went into the bathroom and got a razor blade out of the cupboard I
got a razor blade out of the cupboard I
got a razor blade out of the cupboard I didn’t know exactly what to do with it I
didn’t know exactly what to do with it I
didn’t know exactly what to do with it I just knew that I could seriously harm
just knew that I could seriously harm
just knew that I could seriously harm myself
myself
myself oh I desperately desperately needed an
oh I desperately desperately needed an
oh I desperately desperately needed an answer needed a sense of hope a reason
answer needed a sense of hope a reason
answer needed a sense of hope a reason to keep going and in that moment I
to keep going and in that moment I
to keep going and in that moment I prayed and suddenly an image of my
prayed and suddenly an image of my
prayed and suddenly an image of my younger brother came into my mind Joshua
younger brother came into my mind Joshua
younger brother came into my mind Joshua is his name he with his hopeful dice in
is his name he with his hopeful dice in
is his name he with his hopeful dice in life-giving smile he was five and I
life-giving smile he was five and I
life-giving smile he was five and I began to think about him about how my
began to think about him about how my
began to think about him about how my decisions in my life would affect him
decisions in my life would affect him
decisions in my life would affect him what kind of example would I be sitting
what kind of example would I be sitting
what kind of example would I be sitting for him he was my reason to keep going I
for him he was my reason to keep going I
for him he was my reason to keep going I would choose to live for him and for all
would choose to live for him and for all
would choose to live for him and for all of the things that I could impart to him
of the things that I could impart to him
of the things that I could impart to him so that he would know that no matter how
so that he would know that no matter how
so that he would know that no matter how hard life gods I would be here for him
hard life gods I would be here for him
hard life gods I would be here for him my name is aja
my name is aja
my name is aja and I am here now at the age of 10 the
and I am here now at the age of 10 the
and I am here now at the age of 10 the decision to be here today wasn’t what
decision to be here today wasn’t what
decision to be here today wasn’t what was in my mind but a dilemma of how to
was in my mind but a dilemma of how to
was in my mind but a dilemma of how to choose not to be stuck on the inside at
choose not to be stuck on the inside at
choose not to be stuck on the inside at the age of eleven the doctors came and
the age of eleven the doctors came and
the age of eleven the doctors came and told my family and I there is an
told my family and I there is an
told my family and I there is an operation we can do on your legs
operation we can do on your legs
operation we can do on your legs to make them like everyone else’s my
to make them like everyone else’s my
to make them like everyone else’s my family and I said yes we said yes to
family and I said yes we said yes to
family and I said yes we said yes to what looked like a Meccano set encasing
what looked like a Meccano set encasing
what looked like a Meccano set encasing my foot and my ankle
my foot and my ankle
my foot and my ankle the Elizabeth apparatus consists of pins
the Elizabeth apparatus consists of pins
the Elizabeth apparatus consists of pins going through my leg attached to a metal
going through my leg attached to a metal
going through my leg attached to a metal frame with screws on it then had to be
frame with screws on it then had to be
frame with screws on it then had to be screwed a quarter of the way around
screwed a quarter of the way around
screwed a quarter of the way around every day it was painful
every day it was painful
every day it was painful what followed was two years of pain two
what followed was two years of pain two
what followed was two years of pain two years of in and out of hospital two
years of in and out of hospital two
years of in and out of hospital two years of waiting and enduring I wore the
years of waiting and enduring I wore the
years of waiting and enduring I wore the apparatus for six months on each leg
apparatus for six months on each leg
apparatus for six months on each leg followed by my legs being in plaster in
followed by my legs being in plaster in
followed by my legs being in plaster in the long hard road of physio and
the long hard road of physio and
the long hard road of physio and learning to walk again and a trip to
learning to walk again and a trip to
learning to walk again and a trip to Peru rubber to buy my first pair of
Peru rubber to buy my first pair of
Peru rubber to buy my first pair of shoes from the shop I don’t know if
shoes from the shop I don’t know if
shoes from the shop I don’t know if anybody else buys their shoes from Peru
anybody else buys their shoes from Peru
anybody else buys their shoes from Peru rubber those purple and black shoes
rubber those purple and black shoes
rubber those purple and black shoes we’re a dream come true
we’re a dream come true
we’re a dream come true that soon turned into heartbreak when
that soon turned into heartbreak when
that soon turned into heartbreak when shortly after I went through a growth
shortly after I went through a growth
shortly after I went through a growth spurt and my legs went back to how they
spurt and my legs went back to how they
spurt and my legs went back to how they were before the operation started what
were before the operation started what
were before the operation started what do you do when the dream doesn’t come
do you do when the dream doesn’t come
do you do when the dream doesn’t come true what do I do when it seems that
true what do I do when it seems that
true what do I do when it seems that this disabled deformed body is going to
this disabled deformed body is going to
this disabled deformed body is going to become my permanent frame what do I do
become my permanent frame what do I do
become my permanent frame what do I do when stuck is threatening to become stay
when stuck is threatening to become stay
when stuck is threatening to become stay I keep going just so it doesn’t it 26
I keep going just so it doesn’t it 26
I keep going just so it doesn’t it 26 years of age I’ve got a brain abscess
years of age I’ve got a brain abscess
years of age I’ve got a brain abscess and from this I learned about the true
and from this I learned about the true
and from this I learned about the true magnitude of my heart condition I
magnitude of my heart condition I
magnitude of my heart condition I learned that my heart and my lungs don’t
learned that my heart and my lungs don’t
learned that my heart and my lungs don’t filter around and fiction very well
filter around and fiction very well
filter around and fiction very well which is how I got the brain abscess
which is how I got the brain abscess
which is how I got the brain abscess because of an infection
because of an infection
because of an infection my teeth they traveled to my brain I
my teeth they traveled to my brain I
my teeth they traveled to my brain I learned that my heart is not like a
learned that my heart is not like a
learned that my heart is not like a normal heart the good blood doesn’t
normal heart the good blood doesn’t
normal heart the good blood doesn’t separate properly from the bad blood I
separate properly from the bad blood I
separate properly from the bad blood I learned that the valve that takes oxygen
learned that the valve that takes oxygen
learned that the valve that takes oxygen to my lungs is narrow
to my lungs is narrow
to my lungs is narrow that’s why my fingernails are my lips
that’s why my fingernails are my lips
that’s why my fingernails are my lips are blue I learned that I should not
are blue I learned that I should not
are blue I learned that I should not have children because it’s a risk to my
have children because it’s a risk to my
have children because it’s a risk to my life and to this many times I have
life and to this many times I have
life and to this many times I have bettered the game of stuck in the mud
bettered the game of stuck in the mud
bettered the game of stuck in the mud and have had to pull myself out of the
and have had to pull myself out of the
and have had to pull myself out of the mud of people’s opinions and cruel
mud of people’s opinions and cruel
mud of people’s opinions and cruel remarks out of the mire of my own fears
remarks out of the mire of my own fears
remarks out of the mire of my own fears and insecurities out of the matter of
and insecurities out of the matter of
and insecurities out of the matter of doubt and self-pity out of the mud of
doubt and self-pity out of the mud of
doubt and self-pity out of the mud of inadequacy and self-hatred stuck in the
inadequacy and self-hatred stuck in the
inadequacy and self-hatred stuck in the mud would only become stay in the mud if
mud would only become stay in the mud if
mud would only become stay in the mud if I leave it to choose to not let this
I leave it to choose to not let this
I leave it to choose to not let this happen is what makes my life worth
happen is what makes my life worth
happen is what makes my life worth living from birth to a five-year-old at
living from birth to a five-year-old at
living from birth to a five-year-old at a primary school to a 10 year old
a primary school to a 10 year old
a primary school to a 10 year old wanting to give up to a 13 year old
wanting to give up to a 13 year old
wanting to give up to a 13 year old struggling with my identity so a 26 year
struggling with my identity so a 26 year
struggling with my identity so a 26 year old battling with the true nature of
old battling with the true nature of
old battling with the true nature of what I have to live with stuck in the
what I have to live with stuck in the
what I have to live with stuck in the mud will only become stay in the mud if
mud will only become stay in the mud if
mud will only become stay in the mud if I choose to live it over 37 years I have
I choose to live it over 37 years I have
I choose to live it over 37 years I have been ridiculed mocked laughed it left
been ridiculed mocked laughed it left
been ridiculed mocked laughed it left behind left out I have been poked
behind left out I have been poked
behind left out I have been poked prodded accused of stealing things
prodded accused of stealing things
prodded accused of stealing things I’ve been scanned written about observed
I’ve been scanned written about observed
I’ve been scanned written about observed Marvelettes
at any points and 37 years what could
at any points and 37 years what could have had me stuck and at any point in
have had me stuck and at any point in
have had me stuck and at any point in your life to just kind and different
your life to just kind and different
your life to just kind and different kinds of mud could have had you stuck to
kinds of mud could have had you stuck to
kinds of mud could have had you stuck to but you’re here and I’m here because I
but you’re here and I’m here because I
but you’re here and I’m here because I chose not to stay moving with mud on me
chose not to stay moving with mud on me
chose not to stay moving with mud on me it’s the story of my life the difference
it’s the story of my life the difference
it’s the story of my life the difference between stuck and stay is 37 years of
between stuck and stay is 37 years of
between stuck and stay is 37 years of choosing that no matter what the
choosing that no matter what the
choosing that no matter what the transition past the point of stuck and
transition past the point of stuck and
transition past the point of stuck and the transition past the point of stay is
the transition past the point of stay is
the transition past the point of stay is always the destination thank you very
always the destination thank you very
always the destination thank you very much
”
Be First to Comment