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