[Music]
[Applause]
[Music]
[Applause]
July 25, 2015
for louis and me it’s the most beautiful
day of our life January 5, 2016
the worst day of our life between the
birth of our amber daughter and 1 and
the announce of the first diagnosis we
live five months of carefree life
almost normal
we already request it everywhere with us
maybe to prepare her for this turn of
world we’re going to do at 3 and then
quickly we understand that something
do not go that our life will not be
that of others
at these ten months the chopper falls
and the verdict is without appeal andrea a
rare genetic disease
neurodegenerative
maybe when you will see
this conference next year
machine will no longer be 3 years old a little
baby should not be sick a little
baby has all life in front of him a little
baby will become big
this normality all imagine it stop
for louis is less at these five months
it does not just happen to others
it happens to us it’s now I’m going
give you a secret
before I was like you I was
reluctant
just put doliprane a child
who is teething today I
coordinates five pharmacies for empire
Laugh and my daughter
I was afraid to cut his nails and
then for four months
every week I will hand over his probe
nasogastric and today I change
the extensions of its gastronomy
I wondered what night light
montessori I could have him
buy
and then here I am, the ford
not that she wakes up in the tunnel
of the irm the wiki five months ago is
asked how to carry your baby for
his first bath end up by train
to try to hold on properly
so that she does not move when she
lumbar puncture the first days
of hospitalization I want to talk to
nobody I’m not like you it’s
not happening to me my daughter will go
well she Thursday in louis I do not want
become a corridor a zombie of colors
of neurology
I did not leave the room during
a fortnight I did not want to miss
passage of neurologists I am not
out of the hospital for 20 days
I had to take three showers in total
finally quickly I became
zombies of those who yesterday of assistant
social worker in the social worker
fog of mysterious acronyms for
have her baby recognized as a
disabled without knowing why
justifying by certificates
medical evolutionary by the drafting of a
badly named project of life for
hope to have the right allocation the
good place in the right place
in the good nursery near the good
health professional the right card
disability the right mobility card
inclusion and then redo everything because
his record has lost and understand
quickly very quickly to see bac
+10 to 2 will not serve you strictly in
laughing in this world apart for
sinking like everyone else in the
well named administrative wandering then
like everyone in this world apart
we meet the famous professionals
clumsy health
whoever at midnight in the emergency room looks
your baby is watching you one after
the other but you are the same
family you have to go wrong actually
I come for a gastric reflux
like everyone in this world apart
we crossed the human being in need of
thrills
imagine walking in a stroller with
your son when suddenly a lady pops up
how happy I am to see you
I was at the party the other day I
heard your story
it’s great it’s your daughter not
the time to answer and throw themselves on
she is tugging her belly to her
tube to feed her like everyone
in this world apart
we are tired and go back and all that
finished the freedom of an aperitif out of
office
I can not andree crying she screams
she vomits a lot I can not the
let me come next time
the next
finished the social life the expos them am
born museums I can not I hospital
then weekends improvised trips
surprise
shame we even had the hiking bag
adapted for the road trip next summer
finished career starts pole employment
we are transformed we are damaged
we even wonder if we should not be better
to separate as 80% of parents of this
world apart
you know to try to keep at
minus half a normal life each and
finally if we had everything wrong
Lacan said the real is when we
bangs
we hit the real hard
we took it full face andrea do not
will never walk she will never eat
by the mouth she will never call us
dad mom since she will never speak
so what abandoned
what is the use of persevering in the same mold
since anyway since the announcement of the
first diagnosis had already been
even so no choice must bounce back to
this time andré smiled again the
to smile is our engine we go
to the irm dancing on michael jackson
for electroencephalograms one
prefers david bowie to fires
musical awakening sessions planned at the
Philharmonic of Paris
we explore all sounds and songs
possible to distract her when the
nurses looking on this tiny
mans and it’s very small foot good
vein for sometimes taking blood
for an hour without success I very
early understood which is better to act rather
that procrastinate good but in ten meters
squares of a hospital room how
act eh ben to hold
I have not found better than the dream the
dream the imaginary the one that allows you
to escape the one you are
relate more and more the one to which
you relate more and more your
readings
I wanted to look kind of nature so I
learned permaculture in books to
the hospital not without putting a single time
hands in the ground
I learned culture associations
at the same time as the words atrophy
dystonia mitochondria gastrostomy of
the air elsewhere especially elsewhere andré has
been a detonator in our lives a
real devastating bomb but she we
grows every day to build on
our wasteland losing its bearings
it’s also an opportunity to build it
again lose his carelessness for
gain resilience
it is precisely outside our zone of
comfort that we reveal ourselves the
disease disability puts us at the foot of the
wall they hang you they push you to
think the world differently to unlearn
to deconstruct everything you thought
carefully and durably established
you become short termist you do not
plan more everything you thought
no longer will you become pure moment
so when everything is already father god of
anyway you can buy a body
from farm to ruin and that’s what we have
done with louis we decided to
redraw the short time cambria
would pass by us when I
plans two years back when I
we see bought this farmhouse with
andrea who was one year old
not if she will still be with us at the
end of the works
I do not see acting perhaps with
the energy of despair but certainly
more with that of the moment because
this choice of life can not be measured
reasonably weighing it for the
against by putting more of the less
in excel paintings he tolerates no
outside notice he had to leave refuse
the chronicle of social death announced
seek a social utility
refuse to flow build a
new life this elsewhere which has us
always made you want and that we
could touch so easily
before taking a plane ticket to
sailing to other horizons but we have
quickly realized that it was over
new life imposed on us t2
makes liberticide
I have never been able to resolve this
deprivation of liberty
absolutely build this new
elsewhere in this new scheme that we
was imposed two years ago when we
left paris
we ended up in a village in
full countryside as many inhabitants in
the village only in the buildings
we had left the
watch pastures lose sight of a
cat a dog a cock a horse but you
know what that made me crazy
against the city bustle and my
inner turmoil that echoed me
find in nature in the calm
and the verb to appease open the field
possibilities for serenity
that’s what we want to offer our
why do not you wonder why
lives when cuddling to your baby does
are enough more and who live or fake him
urgently administer a neuroleptic
I challenge you to re-read
education tips according to viola
when your child can scream 15 hours
in a row I challenge you to take
benevolence at the 16th hour
like that was born the idea of the bobos to
the farm
the bobos on the farm is our project
with oxygen bubbles in this daily
anxiety to which we refuse the meaning
that we decide to give the opinion
of andré we do not abandon our ideals or
the sublime by creating this project of
heart what we create rather what
we try to create it’s a place of
inclusive respite the respite run out of breath
it’s a break but it’s also
a place the right to respite that is
registered in the Disability Act 2005 for
family caregivers
family carers these are his 11
million people in France yes 11
million caring for a loved one in
loss of autonomy handicap disease
old age dependency
we wanted to lean on it for
create respite stays in the middle
ordinary tourist is not it so
important to educate children
who can in ordinary environment
then at us children’s sores
it is on the farm an omnipresent nature
suitable accommodation of
attentive professionals to afford
a break out of his time space for
disconnect from his daily life and
reconnect to the ground the kids are
sponges and offer their parents a
benevolent frame to appease them
it’s more than essential it’s
good treatment
I am sometimes asked in relation to
project but how are you going to do
to accommodate normal tourists
with children with disabilities
I ask myself is that when you
go on vacation when you book
your hotel room call you for
know what will be the kind of orientation
sexual or the color of your neighbor
is that before school starts
you call the school to find out if there
will have a handicapped child in the class
of your child
I hope not to accept the inclusion was
refused the exclusion I was asked
recently how to go from madness to
the reality on this project is not the
craziness madness for us it was from
to stubborn in our life before with
the occurrence of the disease for years andre
it’s not easy I tell you you lose
had to give up
so I know why it’s not
easy because it’s a paragraph that
is very moving for me
once the direction from the disability
quote it upsets everything it upsets
the report at night the report to the other
wing compared to others it redefines your
priorities
there will always be a before and after
he’s back to basics a
purge at futilities a funnel that
gradually reduces the field of possibilities
and reveals you unveils and stood up
the veil is to see through the prism of
our vulnerability of our fragilities
it’s discovering our loved ones differently and
they too reveal themselves to welcome him in
our lives new people and
to receive a lot of love
our feelings are increased tenfold
emotional makes us go up very high
when we dream goes well and plunges us
in deep anxieties
when his illness progresses to be at
the listened to weak signals keep
this flexibility as to the response to
give to life and its unpredictability
this is what the handicap teaches us
every day for three years andréa
reveals to us herself we
learn mastery of ourselves is
besides very demanding on it
for three years we have been walking to his
sides too I changed little by little
I accept with our association even
created parent appointments
extraordinary and we meet every
month between us I discuss I discover
incredible life stories of
parents who lost their job
sometimes all their friends and who are
became administrator of the medical opinion
of the coordinating child of their agents
administers with professionals of
health administration experts
french swiss army knife solutions
who does not exist parents of children
disabled people have a life force and
unsuspected resilience do you know
that a study has proved that moms
of autistic children or stress
equivalent to that of a soldier in combat
she never lets go with the bobsledders
farms we are not an exception
do you know that disability is a
inexhaustible source of creativity
sunglasses for example have
been invented at the base for the
visually impaired
remotes for people to
reduced mobility
sms for people
hearing impaired every day on
disability is at the origin of initiatives
and impressive innovations that
deserve to be highlighted because
that so important and useful to the
society as a whole
I do not know if I have my place here tonight
I do not feel like I’m feeling
rather off center and more aligned despite
the occurrence of amber disease 1
I feel that today more
that yesterday we do n it comes in agreement with
ourselves and with our values andrea and
on this earth for you to do this
you are doing
nathan said recently every day my
doubt but we know that we have
the more we choose to move towards a
deadline that upsets us will be
definitively and it is unclear as
we will leave but in the meantime we
built and in the meantime especially we
continue to make our princess dance
on his chair
thank you
[Applause]
[Applause]
[Music]
[Applause]
July 25, 2015
for louis and me it’s the most beautiful
day of our life January 5, 2016
the worst day of our life between the
birth of our amber daughter and 1 and
the announce of the first diagnosis we
live five months of carefree life
almost normal
we already request it everywhere with us
maybe to prepare her for this turn of
world we’re going to do at 3 and then
quickly we understand that something
do not go that our life will not be
that of others
at these ten months the chopper falls
and the verdict is without appeal andrea a
rare genetic disease
neurodegenerative
maybe when you will see
this conference next year
machine will no longer be 3 years old a little
baby should not be sick a little
baby has all life in front of him a little
baby will become big
this normality all imagine it stop
for louis is less at these five months
it does not just happen to others
it happens to us it’s now I’m going
give you a secret
before I was like you I was
reluctant
just put doliprane a child
who is teething today I
coordinates five pharmacies for empire
Laugh and my daughter
I was afraid to cut his nails and
then for four months
every week I will hand over his probe
nasogastric and today I change
the extensions of its gastronomy
I wondered what night light
montessori I could have him
buy
and then here I am, the ford
not that she wakes up in the tunnel
of the irm the wiki five months ago is
asked how to carry your baby for
his first bath end up by train
to try to hold on properly
so that she does not move when she
lumbar puncture the first days
of hospitalization I want to talk to
nobody I’m not like you it’s
not happening to me my daughter will go
well she Thursday in louis I do not want
become a corridor a zombie of colors
of neurology
I did not leave the room during
a fortnight I did not want to miss
passage of neurologists I am not
out of the hospital for 20 days
I had to take three showers in total
finally quickly I became
zombies of those who yesterday of assistant
social worker in the social worker
fog of mysterious acronyms for
have her baby recognized as a
disabled without knowing why
justifying by certificates
medical evolutionary by the drafting of a
badly named project of life for
hope to have the right allocation the
good place in the right place
in the good nursery near the good
health professional the right card
disability the right mobility card
inclusion and then redo everything because
his record has lost and understand
quickly very quickly to see bac
+10 to 2 will not serve you strictly in
laughing in this world apart for
sinking like everyone else in the
well named administrative wandering then
like everyone in this world apart
we meet the famous professionals
clumsy health
whoever at midnight in the emergency room looks
your baby is watching you one after
the other but you are the same
family you have to go wrong actually
I come for a gastric reflux
like everyone in this world apart
we crossed the human being in need of
thrills
imagine walking in a stroller with
your son when suddenly a lady pops up
how happy I am to see you
I was at the party the other day I
heard your story
it’s great it’s your daughter not
the time to answer and throw themselves on
she is tugging her belly to her
tube to feed her like everyone
in this world apart
we are tired and go back and all that
finished the freedom of an aperitif out of
office
I can not andree crying she screams
she vomits a lot I can not the
let me come next time
the next
finished the social life the expos them am
born museums I can not I hospital
then weekends improvised trips
surprise
shame we even had the hiking bag
adapted for the road trip next summer
finished career starts pole employment
we are transformed we are damaged
we even wonder if we should not be better
to separate as 80% of parents of this
world apart
you know to try to keep at
minus half a normal life each and
finally if we had everything wrong
Lacan said the real is when we
bangs
we hit the real hard
we took it full face andrea do not
will never walk she will never eat
by the mouth she will never call us
dad mom since she will never speak
so what abandoned
what is the use of persevering in the same mold
since anyway since the announcement of the
first diagnosis had already been
even so no choice must bounce back to
this time andré smiled again the
to smile is our engine we go
to the irm dancing on michael jackson
for electroencephalograms one
prefers david bowie to fires
musical awakening sessions planned at the
Philharmonic of Paris
we explore all sounds and songs
possible to distract her when the
nurses looking on this tiny
mans and it’s very small foot good
vein for sometimes taking blood
for an hour without success I very
early understood which is better to act rather
that procrastinate good but in ten meters
squares of a hospital room how
act eh ben to hold
I have not found better than the dream the
dream the imaginary the one that allows you
to escape the one you are
relate more and more the one to which
you relate more and more your
readings
I wanted to look kind of nature so I
learned permaculture in books to
the hospital not without putting a single time
hands in the ground
I learned culture associations
at the same time as the words atrophy
dystonia mitochondria gastrostomy of
the air elsewhere especially elsewhere andré has
been a detonator in our lives a
real devastating bomb but she we
grows every day to build on
our wasteland losing its bearings
it’s also an opportunity to build it
again lose his carelessness for
gain resilience
it is precisely outside our zone of
comfort that we reveal ourselves the
disease disability puts us at the foot of the
wall they hang you they push you to
think the world differently to unlearn
to deconstruct everything you thought
carefully and durably established
you become short termist you do not
plan more everything you thought
no longer will you become pure moment
so when everything is already father god of
anyway you can buy a body
from farm to ruin and that’s what we have
done with louis we decided to
redraw the short time cambria
would pass by us when I
plans two years back when I
we see bought this farmhouse with
andrea who was one year old
not if she will still be with us at the
end of the works
I do not see acting perhaps with
the energy of despair but certainly
more with that of the moment because
this choice of life can not be measured
reasonably weighing it for the
against by putting more of the less
in excel paintings he tolerates no
outside notice he had to leave refuse
the chronicle of social death announced
seek a social utility
refuse to flow build a
new life this elsewhere which has us
always made you want and that we
could touch so easily
before taking a plane ticket to
sailing to other horizons but we have
quickly realized that it was over
new life imposed on us t2
makes liberticide
I have never been able to resolve this
deprivation of liberty
absolutely build this new
elsewhere in this new scheme that we
was imposed two years ago when we
left paris
we ended up in a village in
full countryside as many inhabitants in
the village only in the buildings
we had left the
watch pastures lose sight of a
cat a dog a cock a horse but you
know what that made me crazy
against the city bustle and my
inner turmoil that echoed me
find in nature in the calm
and the verb to appease open the field
possibilities for serenity
that’s what we want to offer our
why do not you wonder why
lives when cuddling to your baby does
are enough more and who live or fake him
urgently administer a neuroleptic
I challenge you to re-read
education tips according to viola
when your child can scream 15 hours
in a row I challenge you to take
benevolence at the 16th hour
like that was born the idea of the bobos to
the farm
the bobos on the farm is our project
with oxygen bubbles in this daily
anxiety to which we refuse the meaning
that we decide to give the opinion
of andré we do not abandon our ideals or
the sublime by creating this project of
heart what we create rather what
we try to create it’s a place of
inclusive respite the respite run out of breath
it’s a break but it’s also
a place the right to respite that is
registered in the Disability Act 2005 for
family caregivers
family carers these are his 11
million people in France yes 11
million caring for a loved one in
loss of autonomy handicap disease
old age dependency
we wanted to lean on it for
create respite stays in the middle
ordinary tourist is not it so
important to educate children
who can in ordinary environment
then at us children’s sores
it is on the farm an omnipresent nature
suitable accommodation of
attentive professionals to afford
a break out of his time space for
disconnect from his daily life and
reconnect to the ground the kids are
sponges and offer their parents a
benevolent frame to appease them
it’s more than essential it’s
good treatment
I am sometimes asked in relation to
project but how are you going to do
to accommodate normal tourists
with children with disabilities
I ask myself is that when you
go on vacation when you book
your hotel room call you for
know what will be the kind of orientation
sexual or the color of your neighbor
is that before school starts
you call the school to find out if there
will have a handicapped child in the class
of your child
I hope not to accept the inclusion was
refused the exclusion I was asked
recently how to go from madness to
the reality on this project is not the
craziness madness for us it was from
to stubborn in our life before with
the occurrence of the disease for years andre
it’s not easy I tell you you lose
had to give up
so I know why it’s not
easy because it’s a paragraph that
is very moving for me
once the direction from the disability
quote it upsets everything it upsets
the report at night the report to the other
wing compared to others it redefines your
priorities
there will always be a before and after
he’s back to basics a
purge at futilities a funnel that
gradually reduces the field of possibilities
and reveals you unveils and stood up
the veil is to see through the prism of
our vulnerability of our fragilities
it’s discovering our loved ones differently and
they too reveal themselves to welcome him in
our lives new people and
to receive a lot of love
our feelings are increased tenfold
emotional makes us go up very high
when we dream goes well and plunges us
in deep anxieties
when his illness progresses to be at
the listened to weak signals keep
this flexibility as to the response to
give to life and its unpredictability
this is what the handicap teaches us
every day for three years andréa
reveals to us herself we
learn mastery of ourselves is
besides very demanding on it
for three years we have been walking to his
sides too I changed little by little
I accept with our association even
created parent appointments
extraordinary and we meet every
month between us I discuss I discover
incredible life stories of
parents who lost their job
sometimes all their friends and who are
became administrator of the medical opinion
of the coordinating child of their agents
administers with professionals of
health administration experts
french swiss army knife solutions
who does not exist parents of children
disabled people have a life force and
unsuspected resilience do you know
that a study has proved that moms
of autistic children or stress
equivalent to that of a soldier in combat
she never lets go with the bobsledders
farms we are not an exception
do you know that disability is a
inexhaustible source of creativity
sunglasses for example have
been invented at the base for the
visually impaired
remotes for people to
reduced mobility
sms for people
hearing impaired every day on
disability is at the origin of initiatives
and impressive innovations that
deserve to be highlighted because
that so important and useful to the
society as a whole
I do not know if I have my place here tonight
I do not feel like I’m feeling
rather off center and more aligned despite
the occurrence of amber disease 1
I feel that today more
that yesterday we do n it comes in agreement with
ourselves and with our values andrea and
on this earth for you to do this
you are doing
nathan said recently every day my
doubt but we know that we have
the more we choose to move towards a
deadline that upsets us will be
definitively and it is unclear as
we will leave but in the meantime we
built and in the meantime especially we
continue to make our princess dance
on his chair
thank you
[Applause]
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