five o’clock somewhere right and I am
Irish after all we’re just meeting for
the first time and getting to know each
other one of the first questions you’ll
probably we’ve learned that we’re both
parents and one of the first questions
you’ll probably ask me is so how many
kids do you have
and I’ll say five the conversation will
move on
most likely with me telling you all
about my five kids and you’re telling me
all about yours well smile will sip our
wine and you’ll never know that your
question has just kicked me in the belly
or that I feel like I’ve just lied to
you because I rarely give the correct
answer to that question how many kids do
I have usually i sidestep it I don’t
want to watch your face crumple or hear
you say I’m so sorry
like so many other people before you I
like to laugh and I want to keep things
light hearted but every time I do that I
feel guilty because I do believe we
should share our stories maybe not at
cocktail parties with glasses of wine in
our hands but somewhere sometime somehow
the correct answer to that question is
that I’ve been pregnant thirteen times
I’ve delivered seven babies into this
world but I only have five living
children in 1997 our fourth child Noah
was run over when he was 15 months old
and nine months later his brother Jonah
was stillborn it was a terrible terrible
year that completely redefined life for
me I literally forgot how to breathe and
I think about it every single day
happily I gave birth to another son
Isaiah who’s 16 today
and then to his sister Bella who I like
to call the exclamation point at the end
of our family for obvious reasons but in
between those babies I had more
miscarriages than I care to count one in
four pregnancies end in miscarriage and
26,000 babies are still born in the US
alone each year and yet we rarely talk
about them miscarriage and stillbirth
are largely taboo subjects not mentioned
in polite company or over glasses of
wine at cocktail parties they say
there’s no greater agony than baring an
untold story inside of you and for me
this was that story I held my babies for
about a decade cleaved to my heart and I
didn’t talk about them much I always
knew that someday I would write a book
but I certainly never dreamed that life
would place this particular tale in my
hands but one day I sat down and I
started to write and it took me seven
years but finally I got their stories
out of me and out into the world my book
is called breathe and I wrote it to tell
the story of my sons and to help other
people because that is probably the most
important reason why we should share our
stories to help each other when Noah
died
I searched desperately for other
bereaved parents in those days before
social media I called them I wrote
letters to them I accosted them in
person and I’m sure some of them thought
I was crazy because I was crazy I was
crazy with grief and I was crazy with
pain and when you’re in pain all you can
think about is getting out of pain when
we were little and we come running in
the house crying with skinned knees my
grandmother would always say you can
stand any pain as long as you know it’s
not forever as she stuck a bandaid on
he’s wiped our tears away and sent us
back out to play so I searched for
survivors because I needed to know that
the pain I was in wasn’t going to last
forever
it’s important that we share what I like
to call our war stories we don’t all go
off to war but we fight our battles
every day right here on the homefront
family friends marriage in-laws careers
all these things can wind us and leave
their scars but by daring to open
ourselves up by daring to be vulnerable
we find others who have walked in our
shoes and who understand and we in turn
can reach back and lend a hand to those
who are walking the path behind us we
can give them hope that like seaglass
after lots and lots of tumbling someday
the sharp painful edges will be worn
smooth another reason we should share
our stories is to keep our loved ones
alive
my family has a saying that we carve on
our gravestones to live in the hearts of
those we leave behind is not to die as
long as we are walking this earth our
loved ones will never truly be dead
because we are holding them in our
hearts we still hear their voices in our
heads as they bandage our knees and they
live in us before I wrote my book the
only thing most people really knew about
Noah and Jonah was that they had died
that was the most definitive
characteristic of their short little
lives but because I shared their stories
reader after reader now knows that they
also lived they’ve met them they hold
them in their hearts we talk about them
and it is like they have become manifest
you know one of the biggest fears
bereaved parents have is that
child will be forgotten it’s one of the
great ironies of surviving a tragedy
like losing your baby other people don’t
want to bring them up they’re afraid to
remind us in case we’ve forgotten and we
in turn don’t mention them because we
get really good at protecting other
people from our stories we get really
good at sidestepping their hard
questions but every single time we do
that we feel guilty and we feel guilty
not just because we feel like we’ve lied
to you we feel guilty because we feel
like we’re neglecting them like we’re
forgetting them we haven’t forgotten our
children and we never will and when you
don’t mention them mostly we’re just
wondering if you have so share your
stories and share them in whatever way
works for you I share best by writing
maybe you’re better at sculpting or
painting or singing or photography or
giving a TED talk even we share our
stories to save our lives if we don’t
share them they can suffocate us so take
a deep breath and shatter the silence
because you never know how your story
and your words will impact others and
you never know where that journey will
lead of you dare to take the first step
it might just be to some place that’s so
incredible you can’t even imagine it
like this story I’m gonna tell you right
now so there’s a passage in my book
where I write that it’s my terrible
misfortune to be able to compare losing
Noah who was a toddler
learning to walk and to talk and was
loved and tickled and held by so many
with losing Jonah a baby who was still
in my belly and who was mostly only
known to me and I share how people have
asked me which was harder losing Noah or
losing Jonah to which I replied which
would you miss more your right arm or
your left my book ends with an epilogue
called the book of Bela Bela is 12 years
old now and she’s been dancing most of
her life last year one of her dance
teachers
Pamela Mateus read my book and that
particular passage which would you miss
more stuck in her mind where it grew
into a dance because choreography is how
miss Pam best shares her stories so she
asked me if I would write my story as a
dance and record the voiceover to a
lovely instrumental piece by ólafur
Arnalds called epilogue and so epilogue
the dance was born as Miss Pam
envisioned in this dance half of the
girls can only move their arms and the
other half can only move their legs and
that physical limitation is suspended
only during a brief pas Dada
that’s danced by Bella and my niece Ava
who represent Noah and Jonah in the
dance miss Pam and these girls have
transformed the story of my sons and of
this part of my life into art where once
there was only pain and sorrow now there
is beauty and joy when your baby dies
you wonder so many things including how
you can possibly get through the next
painful breath never mind the rest of
your life your life without your son and
then without your next son stretches
infinitely on beyond you you ask all the
terrible questions for which there will
never be any earthly answers
the whys and the why nots the why means
and the what-ifs and somehow you resign
yourself to living without understanding
but to sit in a darkened theater and
watch Noah and Jonah’s baby’s sister the
epilogue herself dancing their story
with these other beautiful girls almost
two decades after their deaths well you
think to yourself this may be this and
now ladies and gentlemen it is my
distinct honor and my great privilege to
introduce to you now sixteen of the
original 36 girls from Aaron Ray’s
School of Dance
here to share with you now the dance
I am part fish I grew up on an island
submerged in water which perhaps
explains why I became a fish biologist
I’ve spent the better part of my life
swimming and studying fish in one way or
water is the symbol of the womb we all
begin life swimming around in our
mothers bellies from water springs life
as from the biblical flood of Noah we
emerged you are part fish – for billions
of years
animal life on Earth was found only in
the water survival depended on getting
big getting tough or getting out of the
way some three hundred and sixty-five
million years ago our ancestral fish
climbed out of the sea and onto dry land
in 2004 scientists found the fossil
record of Tiktaalik our ancestral fish
Tiktaalik was a fish with the wrist
the first critter that could do push-ups
the evidence of our fishy selves still
remains in our bodies deep deep down in
our DNA we begin life like sea anemones
jellyfish and sharks our hands are
modified fins formed when we are just
three to eight weeks old
micro Kaymer ism is the presence of
cells in one person’s bloodstream which
originated in the blood of a different
person
therefore they are genetically distinct
from the other cells swimming around
them in humans the most common form of
this is called Phaedo maternal micro
chimerism this occurs when cells from a
fetus pass through the placenta and
establish cell families within the
mother these cells remain and multiply
for decades even forever fish are a
symbol of fertility and I’ve been
pregnant 13 times
swimming around in my body could be the
cells from 13 different babies I have
five living children losing babies is
something I know a lot about when Noah
and Jonah had both died people asked
which do you miss more which would you
miss born your right arm or your left
I am the embodiment of my children most
of who are otherwise dead
and as I’m carrying them they too are
carrying me when my children died a part
of me died too I knew this I felt this I
just didn’t know exactly why but now I do and I’ll keep swimming