[Applause] several years ago I was playing a game
several years ago I was playing a game
several years ago I was playing a game of booray when someone peeked at my hand
of booray when someone peeked at my hand
of booray when someone peeked at my hand I had just anteed up with a fistful of
I had just anteed up with a fistful of
I had just anteed up with a fistful of pennies he looks over my shoulder you
pennies he looks over my shoulder you
pennies he looks over my shoulder you can’t win with that he grabs my cards
can’t win with that he grabs my cards
can’t win with that he grabs my cards throws him on the table and my heart
throws him on the table and my heart
throws him on the table and my heart broke
broke
broke it was quite ridiculous I was squeezing
it was quite ridiculous I was squeezing
it was quite ridiculous I was squeezing back tears wanting to play that losing
back tears wanting to play that losing
back tears wanting to play that losing hint it took years to figure out my
hint it took years to figure out my
hint it took years to figure out my reaction I eventually related it to my
reaction I eventually related it to my
reaction I eventually related it to my early days of adapting to motherhood our
early days of adapting to motherhood our
early days of adapting to motherhood our first child was born too soon
first child was born too soon
first child was born too soon amid tornadoes in the night she was
amid tornadoes in the night she was
amid tornadoes in the night she was quickly admitted to the neonatal
quickly admitted to the neonatal
quickly admitted to the neonatal intensive care unit the next morning a
intensive care unit the next morning a
intensive care unit the next morning a doctor told me your daughter has an
doctor told me your daughter has an
doctor told me your daughter has an extremely small head
extremely small head
extremely small head she might have trouble recognizing words
she might have trouble recognizing words
she might have trouble recognizing words and numbers I was confused I had no idea
and numbers I was confused I had no idea
and numbers I was confused I had no idea why we were discussing cognitive skills
why we were discussing cognitive skills
why we were discussing cognitive skills on day one but it wasn’t only her eyes
her head her eyes her intestines were
her head her eyes her intestines were blocked her kidneys were malfunctioning
she would need surgery to live but she
she would need surgery to live but she wasn’t well enough for surgery and her
wasn’t well enough for surgery and her
wasn’t well enough for surgery and her eyes her eyes did not reflect life she
eyes her eyes did not reflect life she
eyes her eyes did not reflect life she would be like when a child is born with
would be like when a child is born with
would be like when a child is born with two or more major anomalies they are
two or more major anomalies they are
two or more major anomalies they are considered to have a syndrome a
considered to have a syndrome a
considered to have a syndrome a worldwide genetics database revealed
worldwide genetics database revealed
worldwide genetics database revealed nine cases like our daughters we didn’t
nine cases like our daughters we didn’t
nine cases like our daughters we didn’t have a name for it
have a name for it
have a name for it we were warned she might not eat walk or
we were warned she might not eat walk or
we were warned she might not eat walk or talk and some syndromes are incompatible
talk and some syndromes are incompatible
talk and some syndromes are incompatible with life incompatible with life
with life incompatible with life
with life incompatible with life I already fiercely loved our perfect
I already fiercely loved our perfect
I already fiercely loved our perfect little broken child who clung to me when
little broken child who clung to me when
little broken child who clung to me when I held her but she might be incompatible
I held her but she might be incompatible
I held her but she might be incompatible with life after two weeks her condition
with life after two weeks her condition
with life after two weeks her condition improved and surgery was scheduled next
improved and surgery was scheduled next
improved and surgery was scheduled next to her incubator we baptized her Julie
to her incubator we baptized her Julie
to her incubator we baptized her Julie Claire and gave her up to God
Claire and gave her up to God
Claire and gave her up to God the mystery of mystery the sacrament was
the mystery of mystery the sacrament was
the mystery of mystery the sacrament was truly a surrendering of our child
truly a surrendering of our child
truly a surrendering of our child there was no white gown trailing to her
there was no white gown trailing to her
there was no white gown trailing to her toes it was just the tubes and the wires
toes it was just the tubes and the wires
toes it was just the tubes and the wires and this green tinged suction apparatus
and this green tinged suction apparatus
and this green tinged suction apparatus that would the gastric juices from her
that would the gastric juices from her
that would the gastric juices from her stomachs so she wouldn’t drown in her
stomachs so she wouldn’t drown in her
stomachs so she wouldn’t drown in her own fluid a baptism mimics a near
own fluid a baptism mimics a near
own fluid a baptism mimics a near drowning after which the baptized rise
drowning after which the baptized rise
drowning after which the baptized rise to live a new life but there was a real
to live a new life but there was a real
to live a new life but there was a real possibility this baby would not survive
possibility this baby would not survive
possibility this baby would not survive surgery and I had little faith in the
surgery and I had little faith in the
surgery and I had little faith in the promise of new life
my mother held on to hope for me she’d
my mother held on to hope for me she’d tell me they don’t know everything
tell me they don’t know everything
tell me they don’t know everything Catherine I see this little girl dancing
Catherine I see this little girl dancing
Catherine I see this little girl dancing and laughing I even think she’s going to
and laughing I even think she’s going to
and laughing I even think she’s going to see I couldn’t feel hope I couldn’t talk
see I couldn’t feel hope I couldn’t talk
see I couldn’t feel hope I couldn’t talk hope but hope was there it was I’m
hope but hope was there it was I’m
hope but hope was there it was I’m wearing my muscles as I fell into the
wearing my muscles as I fell into the
wearing my muscles as I fell into the rhythm of scrubbing in daily to sit with
rhythm of scrubbing in daily to sit with
rhythm of scrubbing in daily to sit with our baby surgery it was a success
our baby surgery it was a success
our baby surgery it was a success even so it would take time for her to
even so it would take time for her to
even so it would take time for her to recover we looked forward to chatting
recover we looked forward to chatting
recover we looked forward to chatting with nurses about her progress and
with nurses about her progress and
with nurses about her progress and helping with her care one morning my
helping with her care one morning my
helping with her care one morning my husband and I were in the elevator with
husband and I were in the elevator with
husband and I were in the elevator with a familiar hospital worker and she turns
a familiar hospital worker and she turns
a familiar hospital worker and she turns to me and says well you’re looking good
to me and says well you’re looking good
to me and says well you’re looking good today
today
today my kind husband quickly respond she
my kind husband quickly respond she
my kind husband quickly respond she looks good every day put the woman’s
looks good every day put the woman’s
looks good every day put the woman’s shoes back oh no she doesn’t it was the
shoes back oh no she doesn’t it was the
shoes back oh no she doesn’t it was the first time we’d laughed in weeks
first time we’d laughed in weeks
first time we’d laughed in weeks and those week felt like years
and those week felt like years
and those week felt like years Julie’s intestines would slowly heal but
Julie’s intestines would slowly heal but
Julie’s intestines would slowly heal but at the same time she developed the signs
at the same time she developed the signs
at the same time she developed the signs of having an incurable liver condition
of having an incurable liver condition
of having an incurable liver condition the doctor calmly detailed what to
the doctor calmly detailed what to
the doctor calmly detailed what to expect just when we had accepted the
expect just when we had accepted the
expect just when we had accepted the idea of raising a cognitively impaired
idea of raising a cognitively impaired
idea of raising a cognitively impaired blind child we were being told we
blind child we were being told we
blind child we were being told we wouldn’t get the chance incompatible
wouldn’t get the chance incompatible
wouldn’t get the chance incompatible with life my losing hand was being taken
with life my losing hand was being taken
with life my losing hand was being taken from me and I almost folded
with nothing more to be done for her
with nothing more to be done for her Jolie was released to the warmth and
Jolie was released to the warmth and
Jolie was released to the warmth and grunge enos of our home friends and
grunge enos of our home friends and
grunge enos of our home friends and family stop by with love and casseroles
family stop by with love and casseroles
family stop by with love and casseroles we continued with medicines
we continued with medicines
we continued with medicines pediatricians scratching their heads
pediatricians scratching their heads
pediatricians scratching their heads prayers tears more tears and hope held
prayers tears more tears and hope held
prayers tears more tears and hope held by The Fearless somehow Joey lived and
by The Fearless somehow Joey lived and
by The Fearless somehow Joey lived and thrived
thrived
thrived she began crawling and uttering sound
she began crawling and uttering sound
she began crawling and uttering sound one day I was walking with her in a
one day I was walking with her in a
one day I was walking with her in a little pink stroller as we passed an art
little pink stroller as we passed an art
little pink stroller as we passed an art museum
museum
museum I heard heart heart heart and I saw her
I heard heart heart heart and I saw her
I heard heart heart heart and I saw her little finger pointing to a sculpture on
little finger pointing to a sculpture on
little finger pointing to a sculpture on the lawn that I Dean before but hadn’t
the lawn that I Dean before but hadn’t
the lawn that I Dean before but hadn’t really taken much note of it’s just
really taken much note of it’s just
really taken much note of it’s just these two circles of red metal tubing
these two circles of red metal tubing
these two circles of red metal tubing slightly bent but with her finger
slightly bent but with her finger
slightly bent but with her finger guiding me I saw for the first time the
guiding me I saw for the first time the
guiding me I saw for the first time the lines rise up forming a pair of hearts
Jolie is now nine years old earlier this
Jolie is now nine years old earlier this year
year
year right here on this stage in a dance
right here on this stage in a dance
right here on this stage in a dance recital she executed seven perfect rolls
recital she executed seven perfect rolls
recital she executed seven perfect rolls and two and a half imperfect
and two and a half imperfect
and two and a half imperfect cartwheels
cartwheels
cartwheels just as my mother suspected she laughs
just as my mother suspected she laughs
just as my mother suspected she laughs she dances and though we’re not sure how
she dances and though we’re not sure how
she dances and though we’re not sure how clearly she does see reading and math
clearly she does see reading and math
clearly she does see reading and math giver fit but she loves telling me about
giver fit but she loves telling me about
giver fit but she loves telling me about what she’s learning in science
what she’s learning in science
what she’s learning in science her younger sister Cecile’s only
her younger sister Cecile’s only
her younger sister Cecile’s only imperfection at birth was a small red
imperfection at birth was a small red
imperfection at birth was a small red fish shaped mark on her belly and her
fish shaped mark on her belly and her
fish shaped mark on her belly and her typical behaviors have taught me just
typical behaviors have taught me just
typical behaviors have taught me just how much of joeys development has been
how much of joeys development has been
how much of joeys development has been close to normal
close to normal
close to normal our third child she was born with the
our third child she was born with the
our third child she was born with the same rare condition as surely all the
same rare condition as surely all the
same rare condition as surely all the fears and doubts came back we now had a
fears and doubts came back we now had a
fears and doubts came back we now had a name for it it’s called strong syndrome
name for it it’s called strong syndrome
name for it it’s called strong syndrome but we still had little information due
but we still had little information due
but we still had little information due to its rarity
to its rarity
to its rarity like many syndromes there are variations
like many syndromes there are variations
like many syndromes there are variations and omlie with fair the eye problem
and omlie with fair the eye problem
and omlie with fair the eye problem which seems to have made a difference in
which seems to have made a difference in
which seems to have made a difference in her development my early years of
her development my early years of
her development my early years of motherhood were heavy with fears fears
motherhood were heavy with fears fears
motherhood were heavy with fears fears of blindness fears of disabilities fears
of blindness fears of disabilities fears
of blindness fears of disabilities fears of caring for sick leave children living
of caring for sick leave children living
of caring for sick leave children living through these fears transformed me I no
through these fears transformed me I no
through these fears transformed me I no longer pity people who endure major
longer pity people who endure major
longer pity people who endure major setbacks I stand in awe how they
setbacks I stand in awe how they
setbacks I stand in awe how they struggle and thrive I have learned to
struggle and thrive I have learned to
struggle and thrive I have learned to not trust my fears and to stick tightly
not trust my fears and to stick tightly
not trust my fears and to stick tightly to people who hope because on the other
to people who hope because on the other
to people who hope because on the other side of the dark days there is new life
side of the dark days there is new life
side of the dark days there is new life there is joy and yes even dancing
you
you [Applause]
[Applause]
[Applause] [Music]
”
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