Living with diabetes - Safely in the Rainbow (documentary)

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you see Tabasco bag
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life it's a process it's a process of
discovery of uncovering the myriad of
wonders that surround us it's a process
of balance it's a process of exploring
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and coming back to our center again
Frederic and I were in the middle of
raising three small children what are we
doing in our role as parents we were
trying to create a peaceful and playful
environment we're learning about the
world could unfold
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who is we
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[Applause]
it all began at the little show of
Paris's nursery school before summer
vacation I remember looking at him
through the video camera and thinking
that's strange he doesn't seem very
happy which was so rare for him one day
to another almost a few years after he
turned 2 we noticed he started asking
for water and he would come and he would
guzzle
two or three full glasses and I didn't
think anything of it because it's July
it's summer we're in Spain he's home
running around after his sister and then
it only made sense that drinking so much
water he would make big diapers and he
started melting away the next night
Paris collapses to the floor and I
remember driving to the hospital running
in with him in my arms and saying to the
nurses she's losing weight he's melting
before our eyes and one minute later a
doctor came back to me and said your son
seems to have type 1 diabetes
and I remember thinking I don't know
anything about diabetes I'd heard the
word I knew it had something to do with
something called insulin and it had to
do with getting shots every day that's
all I knew for the next seven days Paris
and I lived at the hospital while I
learned how to take care of him there's
no time to get used to diabetes your
child needs injections to survive that
first night in the hospital
i tearfully asked the doctor if it was
something I'd done had I caused diabetes
by giving Paris too much sugar he said
every parent asks that question but the
answer is no might Paris outgrow it
no he said again once the pancreas stops
making insulin it never regains that
function Paris will have diabetes for
life
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in those first few days the outside
world ceased existing for me learning to
give injections was painful for all of
us oh I'm recording this but just for I
guess documentation sake it was
overwhelming because there was so much
to learn
weighing food counting rations
calculating insulin doing tests to
measure his blood sugar learning when he
needed extra insulin to correct a high
number and when his numbers were too low
and needed fast sugar and food sometimes
all we could do was make it from one
meal to the next
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when Paris was sleeping I didn't feel
very brave but then Frederic and the
girls would visit and he'd remind me I
wasn't alone we were a whole family
and that made a big difference
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frederik would leave work everyday to
attend classes with me to learn how to
manage diabetes we were really a team
taking care of him the situation I found
myself in was being alone in an almost
empty Hospital in July and having a
two-year-old to entertain all day kids
are so resilient able to have fun in the
most unusual of circumstances I was so
grateful to family and friends who took
care of the girls because I couldn't be
in two places at once when I learned the
Paris absorbed insulin much better when
he exercised we began exploring the
halls for adventure we could just put
chairs here and just hang out but on the
morning of the third day though I still
felt in a state of shock
I slipped out of bed while Paris was
sleeping and stood looking at myself in
the bathroom mirror
and something happened I felt the power
of life striving to lift my heart up
suddenly I understood all I had to do
was put my arms around this present
moment take care of just one moment one
day at a time
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you're so fast armed with our new
knowledge I knew we were going to be
living a different life but I also
believed we were going to find our way
back to joy
these are the kind of restaurants we can
go to that they're empty
it was indeed a new lifestyle no meal
was carefree anymore
we had to weigh measure count calculate
and administer insulin at every meal but
no one said we couldn't still have fun
besides administering insulin constantly
measuring Paris's blood sugar was the
most important thing we did
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people living without diabetes have
blood sugar levels naturally maintained
around 100 all day long for Paris a
healthy range extends between 70 and a
hundred and 70
symptoms of low blood sugar can be
sweating dizziness fatigue and sudden
changes in personality such as being
aggressive or sad if Paris was lower
than 70
we gave him a form of fast sugar such as
fruit juice
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symptoms of high blood sugar can be
extreme hunger and thirst frequent
urination followed by nausea and
vomiting if his blood sugar was higher
than 200 we gave him an extra dose of
insulin well since you're not honest I
might even take it up diabetes occurs
when the pancreas has stopped producing
insulin for reasons still not completely
understood so insulin is needed from an
outside source for Paris to survive once
just a few weeks out of the hospital
when I was still learning how to manage
diabetes I accidentally gave Paris an
overdose of insulin his blood sugar
level at bedtime had been very high over
300 so I had given him an extra
injection yet when I measured his blood
sugar one hour later it hadn't gone down
so I gave him another injection of
insulin it was the middle of the night
and I knew I had to do an additional
test in half an hour to make sure he was
going down but not dropping too fast but
I fell asleep I didn't hear my alarm go
off only 15 minutes later I woke up on
my own and in a panic raced into Paris's
room where he was sound asleep I did a
test and the monitor said low which
meant his blood sugar was so low the
monitor couldn't even find enough sugar
to measure
I remember thinking don't panic stay
calm
sink it quickly score did to glucose
sports into his mouth which he swallowed
even though he was sleeping and I lay
down next to him and gave him a bottle
of chocolate milk which he also drank as
I stayed there with my arms around him
grateful I had wakened up to find him
that low suddenly his whole body went
rigid and he screamed mama terrified and
I realized he was having convulsions I
yelled for Frederick and when he saw
what was happening he raced to get the
emergency glucagon shot we always keep
in a
reader Frederick immediately gave Paris
the injection in his thigh and his whole
body went limp we didn't know what had
just happened and I thought I've killed
my son
an eternal minute later Paris opened his
eyes and said I'm a little bit okay now
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his next blood sugar test showed he was
up to 50 he was safe
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after one year of Paris receiving daily
injections we began trying an
alternative method to giving him insulin
the insulin pump the pumps mechanism
pushes insulin from an inside reservoir
through a cable and into a tiny silicon
catheter that has been inserted just
below the skin the catheter is inserted
with a tiny needle which is immediately
withdrawn and for the next two to three
days
Harris was pain-free while he received
the precisely measured doses of insulin
he needed to survive we were relieved at
his bravery but Paris was more thrilled
with his birthday skates
what is this and do we do cliques now
why because we have the what the West
magic blue box okay no put it in there
sweetheart
show and where's your magic blue box
okay this is do I have a kiss for you it
was the beginning of a new chapter in
all our lives the pumpkin deliver
different rates of insulin to follow
Paris's biorhythms that change
throughout today the pump is sturdy and
can withstand stress insulin could be
suspended while Paris left over the edge
it was waterproof and though the pump
eliminated the need for daily injections
its pain-free delivery system alone
would not keep Paris safe ten finger
click tests a day helped ensure his
blood sugar stayed within a healthy
range gradually as he grew so did his
abilities
and with new abilities King knew freedom
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a freedom to take more responsibility
for his own safety and keep his balance
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GaN was the little boy wholly dependent
upon his parents for his
moment-to-moment well-being with every
passing year he was learning to listen
to the signals of his body
Paris was on the road to independence
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at school he was treated as any other
student by teachers and any other friend
by classmates he was just one of the
crowd no more no less he was someone
with a special condition who might need
to drink juice in the middle of class if
he was low or get up to drink water if
his number was high finally having
diabetes was only one part of him I
helped my brother by making it fun for
him cuz it's not it's like a scary thing
to write your numbers down on a graph
like you don't want to do that every day
so you have to make it colorful and fun
and sometimes I offer to do him a
control or he's a good number and I know
it then I had the number and then I make
him guess so I just try my hardest to
keep him actually stable and happy the
hardest thing for me to have a brother
living with diabetes is when he gets a
lower high imagine I'm 500 just Orson
210 days later I'm 100 you won't think
that's that's that much but if you look
at it on a graph it's like a rock
falling out from the sky every three
months Paris went to the hospital for a
revision a special blood test averaged
his blood Sugar's over the previous
months
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perfect for me between 150 145 so 60 we
made this rainbow chart and he didn't
want to go down below which was the
fishies and mermaids into the sea and he
didn't want to go up high into space he
wanted to say in the rainbow when he was
little and about to get his injections I
would distract him by dancing around the
room sometimes it can be pretty
difficult when I'm doing something with
my mother or with Parris birth my sister
and whenever he's low we have to stop
whatever we're doing and take care of
him until we know he's okay to just pick
up where we left off
and living with a child with diabetes
itself first of all it's complicated
because it requires attention a lot of
attention which you know parents should
give most of the time they can't or they
they know they cannot you know sure you
know we have the chance he has the
chance of having a fighting a mama and a
Papa you know you know the mother and a
father too ought to take care of him
some other some other kids don't have
this chance so first of all it's you
know under what conditions the kid is
going to be living you know we thought
with say Billy's one night when
Frederick was away just after midnight
I found Paris on the floor and the
bathroom vomiting I knew it could be a
stomach virus but with diabetes high
blood sugar should always be ruled out
first sure enough his blood sugar was
over 400 and he was feeling terrible
I remember thinking it's not possible
his blood sugar was perfect at bedtime
only a few hours ago I checked his pump
cable for possible air bubbles and
discovered the cable was actually broken
I knew then I was going to be up all
night to test his blood every hour to
make sure he was going down but not too
fast
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it's a delicate process getting Paris's
system back into balance again Paris
woke up in the morning having slept
through the night's events
he asked me innocently how is my night
perfect no
yet no matter how well we take care of
him all day and all night long the
process starts over again the next day
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the way of going forward is knowing
exactly what your body is telling you
they have to be aware and conscious of
their condition which is
life-threatening at the end I was
learning how to get myself insulin and
that night I was having spaghetti but I
I gave myself the insulin before and in
the end I didn't eat all of it I'm
walking to bed and when I get in bed I
start having a headache and onto it and
my big sister said hey Paris mine you
just total control might be that you're
loved and when I did it control I was 17
she must have given himself an overdose
of insulin and then started to drop
really quickly but Alex and I were
almost asleep when we heard everybody
running upstairs I knew right away that
it was Paris
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hey stay with me here list is your
mission mr. event this year it's okay
sir you're really honest here and then
all of a sudden all my eyesight became
blurry and foggy
so just to look to Alexa
a card book defines the visual the
little singing in our death
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and I was in a dream
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okay so I was feeling something that was
not going right I gave my body I could
feel something not going right
I was terrified I didn't know what to do
or anything I was afraid of leaving
because I just thought I was just gonna
go up and espouse the end of me
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okay so do feel right strength coming
back and then I started to like think
about her because often I just wasn't
thinking I'm just like Jean I was just
thinking I didn't know this was real
okay it was trisomy one of the moments
where you need to be clear I need to
take care you know the right decisions
and I think I didn't take the register
she's the glacially I've given you a
shot at that time when you're 17
actually give you the shot and probably
we know again so so far now into into
low numbers
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a bunny
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when we move to Barcelona everything was
new we're living by the sea I joined the
royal team they've got a new team of
doctors buddies comida en la nación a
perfect oh yes temprano sido muy bien
con Chico's caffeine GC motherboard
annually Competizione after months of
training I earned a C on Barcelona's
crew team at the International rowing
competition in Amsterdam we were all
super nervous I had to be really careful
not to mistake my shaking us for low
number before racing I extra rations of
carbohydrates to make sure that had
enough sugar to burn while competing but
knowing exactly what your body and burns
during sports is never easy
that's why constantly checking in with
yourself to see how you feel is so
important
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but sometimes even my best calculations
beforehand are not enough to prevent a
low I generally can carry you through a
race and if you're excited you may think
you feel fine but it may not be accurate
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one of the symptoms of very low blood
sugar has been confused this is very
dangerous because it can prevent you
from realizing what you need to do to
help yourself
my mother thought I looked out of it she
said I look dazed and asked me to do a
test when I did a control it said
twenty-eight I didn't believe it
I thought the monitor must be upside
down it must be 82 because I didn't feel
28 a moment later I felt really bad I
know the monitor was right I need to
juice our team didn't win but we found
out later that we were the only team of
our A's competing against guys five
years older for us that was reason
enough to celebrate one day I received a
phone call from my school saying there
was a new student who had just been
diagnosed with type 1 diabetes and I
could help him understand a little more
easily his new medical condition
I told him about the rainbow that can
help keep us safe and sound and shorten
my magic blue box the day Marc got his
pomp he came over to show it to me
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if we can share what we do with others
and you can go forth further around the
world that should be that should be
excellent other kids could live more
happily mentoring has become so
important to me that one day with the
permission of the town hall of Barcelona
and the Children's Hospital Santander
though we invited more than 30 kids
living with type 1 diabetes and their
families to come to a party to learn
firsthand about living safely in the
rainbow
what a lot of people don't realize that
he needs to have insulin every day and
no insulin he'll die and with too much
insulin he'll kill himself
honestly it's made the entire family
kind of a team because we all have to
work on this it's something that affects
the entire family and we have separates
we really have to like stay together and
really be a team my message of hopes are
giving to little kids or to anybody is
you always try and listen to your body
and don't worry you'll be fine you can
do anything
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Filmed over 16 years, Safely in the Rainbow, shows Pâris and his family’s life from the time he is diagnosed with type 1 diabetes at age 2 until young adulthood. We experience the emotional and tumultuous time at the hospital when the family needs to come to terms with the new reality of caring for a toddler suddenly living with diabetes – while still being a family of five. We see Pâris and the family grow and learn how to cope with the highs and lows of life with diabetes – both when you are faced with hard decisions during nightly hypo events, controlling blood sugar when competing in sports and the invention of the ‘safely in the rainbow’ concept that has helped Pâris to manage his blood sugar daily from a young age. The family consists of Wendy (mom), Fréderic (father), Antje (oldest sister), Pâris (brother), Alexa (youngest sister). They live in Barcelona, Spain, but originate from France and the US. Wendy Mangeant, a filmmaker and the mother of Paris, has filmed Pâris, first as a way of sharing everyday family life with grandparents living overseas – later as a way of documenting how a family copes with having a child living with type 1 diabetes. Wendy wants to share the film with other families whose children have been newly diagnosed to help them cope with the questions, fears and uncertainties they experience. The film is produced by Wendy and Frédéric Mangeant in collaboration with Novo Nordisk. You can contact Wendy via info@novonordisk.com