Translator: Paula Nuñez Reviewer: Hélène Vernet
Once upon a time there was a blue world.
Everything was blue except for one point, a pink dot.
That’s how my daughter, Carla Marie, described herself
in a story she wrote and illustrated at nine:
an explosive pink dot in the blue world of life.
And explosive, she is!
Early, hypersensitive,
of an overflowing vitality,
always ready to marvel,
to help others and to see in love
the root cause of everything
– a love so merging that all our separations
live like a tear.
And, in conclusion of her story, she says:
“Finally, she was good in her blue
and she lived there very happy. “
And we live very happy in his blue, his dad, his sister and me,
until October 22, 2014.
That day, our life changes.
Pediatric emergencies of the CHU de la Timone
loosen a brainstem injury
on the MRI they performed on Carla Marie.
They tell us we have to spend the night
to do additional exams.
The exams are reassuring, concluding to a simple inflammatory origin,
before concluding two months later, an infiltrating glioma of the brainstem,
an inoperable, incurable, very aggressive child’s tumor,
giving him a life expectancy of only eighteen months at best,
and certainly a lot less.
Carla Marie becomes, for the medical community, a lost case,
a case so difficult to live
that everyone would already like to forget it as a failure.
Two months later, Carla Marie goes out
in the night, at 1 am, at the hospital,
after two months of hospitalization.
A quarter of an hour after his last breath, the doctor on call
come to notice the death without a word, without a look,
and we are asked if we have planned the outfit.
I do not understand these words.
What attire should I have planned?
Parents never foresee the death of their child.
Until the last breath, they hope for the miracle.
So, dress her up
and then we are told that the stretcher bearers will pick her up
to take her to the funeral parlor,
where we will have to wait 8 hours to see her again.
We remain a moment motionless, incredulous, with his dad in the room,
after the stretcher-bearers took her to their cart.
Then, the door opens and we are asked, a little embarrassed and politely,
how long do we need to collect our belongings,
before the relief team of 5 hours, to redo the room.
So, we leave the room.
One last look at the name written on the Velleda felt gate,
and we wait outside, on a bench, for the opening of the funeral parlor.
So, to the unspeakable suffering of the loss of our daughter
adds a feeling of abandonment.
Our daughter did not miss anything from a medical point of view.
She even received exceptional treatment.
But is it just medical that we need
when we live the end of life of his child?
The hospital is not a place to die,
for anyone, let alone for a child.
There is a gap between what is played for parents
and for the nursing staff.
The priorities are not the same.
For the parents, it is to give oneself in accelerated,
all the love that a whole life would not be enough to give itself.
For the nursing staff,
it’s living faster and forgetting
what they perceive only as suffering and failure.
Yet the last few months with Carla Marie
were the hardest of all our existence
but also the strongest, the most intense.
What was being played was so strong in terms of love
that sometimes it was even like another world.
It was an ocean of love that managed to take the step
on all the horror of the situation.
And that’s also what many palliative care professionals report
who speak of mutual enrichment,
ultimate and beautiful moments of life at the bedside of end-of-life patients.
Yet, there is no Palliative Care Unit in Pediatrics
in our French hospitals,
and existing hospices are reluctant,
when they do not refuse to welcome children.
There is no support for families living these events,
nor support for caregivers just as hard-pressed,
no accompaniment to the extent of the cataclysm
that represents the end of life of a child, nor any care in the measure
of the ultimate love that is played in those moments.
Yet, a child dies every day of cancer in France,
and there are more than 4,000 child deaths a year.
What is represented as the most inconceivable thing,
the most inconceivable loss, therefore hits 4,000 families a year.
So why do not we accompany them better?
And why this emptiness?
Because the death of a child is so unthinkable that it is unthinkable.
Because as soon as you arrive, the best way to find it,
it is to forget it.
Yet, the consequences of the death of a child must be thought
because they are a reality
and that they touch a circle much wider than the only parents.
Siblings, often over several generations,
classmates, teachers of the child,
all the nursing staff,
no one is unscathed from this real trauma
and yet everyone is trying to pretend it did not happen
or did not arrive.
So parents experience the double pain of losing their child and denial.
They feel disturbing, run away and almost ashamed
because it is shameful to live such a fate,
because, of course, we must be a bit cursed
to be struck by fate.
Because we are scared and because we remind ourselves every time,
what everyone would like to forget: the possible death of a child.
So, not only do we not accompany the parents,
but in addition, a few months after the death,
our intimate society to parents to mourn,
as an invitation to move on, to turn the page,
to take on oneself, to spare others.
But, who cares really
when we encourage a parent to mourn?
Of the psychic balance of the parent, or of oneself?
Who has the most interest in forgetting this unnatural death?
The parent sentenced to live with?
Or his entourage who would like to forget about it
to regain his carelessness before?
So, if mourning means forgetting,
it’s just impossible for parents.
Because after the loss of their child,
the most difficult and the most unbearable is his forgetfulness.
So, what resource to bring to these families?
How to help without putting oneself at risk?
Because we are all helpless in the face of such a misfortune.
We all have the temptation of flight because we do not know what to say,
because we are afraid of being clumsy,
because we are afraid of not being up to it.
But clumsiness is nothing beside the escape,
which will necessarily be lived by the parents as a denial of their misfortune.
We must dare to talk about it to get parents out of their isolation
and to help oneself to live what one does not want to live.
But, what to say?
In truth, it’s less about saying than listening,
show consideration for the child at the end of life
because the end of life is still life and the ultimate life,
show consideration for parents,
for the misfortune that is theirs, without running away from them,
without acting as if nothing had happened,
to be there, just present and benevolent.
So, what resource to bring to parents?
Well, recognition first.
Then love,
because love is the ultimate resource
to live the end of a child’s life and survive him after
– the love of others of course,
but also the love of his child, again and again.
Because the death of the child is not the end of life
nor, especially, the end of life with him for the family.
Parents lose their child
but not the love of their child who continues to live in them.
So, let’s accept that even if the child is no more,
parents continue to talk about it, to make room for it,
without running away from them, without judging them disturbing.
And disturbing, they will necessarily
talking about their deceased child, sharing his pictures,
celebrating his birthday,
by making of his place of burial a place full of colors.
But we must not see it as a pathological and deadly behavior,
but rather a bond of love that persists beyond death.
This link is the key to resilience:
make room for the child so that he does not take all the space,
it is the challenge of supporting orphan families with a child.
I repeat myself often, like a mantra,
a sentence that Carla Marie once told me at 8 years old.
She said :
“Mom, behind every misfortune hides a little happiness. “
Behind the great misfortune of losing a child
hides this little happiness of love stronger than death.
One day someone told me
that my story multiplied his desire to live and share.
This is what we expose ourselves to by opening ourselves to ourselves, parents orphaned by a child,
not because our misfortune will help you
to feel lucky for your own happiness or absence of misfortune,
but because you will draw from our experience of this misfortune,
the immense hope of a love stronger than death.
Six months after the death of Carla Marie,
we created the association Le Point Rose
to develop pediatric palliative care,
to accompany people facing the end of life of a child,
to help them live those moments of ultimate love at his bedside,
and to find a form of resilience after, in love
– a pink dot to find the little happiness behind the great misfortune,
a pink dot to add life to the days
when we can not add days to life,
to make the blue around, more blue and deeper,
to multiply the desire to live and share.
Once upon a time there was a blue world.
Everything was blue except for one point, a pink dot.
That’s how my daughter, Carla Marie, described herself
in a story she wrote and illustrated at nine:
an explosive pink dot in the blue world of life.
And explosive, she is!
Early, hypersensitive,
of an overflowing vitality,
always ready to marvel,
to help others and to see in love
the root cause of everything
– a love so merging that all our separations
live like a tear.
And, in conclusion of her story, she says:
“Finally, she was good in her blue
and she lived there very happy. “
And we live very happy in his blue, his dad, his sister and me,
until October 22, 2014.
That day, our life changes.
Pediatric emergencies of the CHU de la Timone
loosen a brainstem injury
on the MRI they performed on Carla Marie.
They tell us we have to spend the night
to do additional exams.
The exams are reassuring, concluding to a simple inflammatory origin,
before concluding two months later, an infiltrating glioma of the brainstem,
an inoperable, incurable, very aggressive child’s tumor,
giving him a life expectancy of only eighteen months at best,
and certainly a lot less.
Carla Marie becomes, for the medical community, a lost case,
a case so difficult to live
that everyone would already like to forget it as a failure.
Two months later, Carla Marie goes out
in the night, at 1 am, at the hospital,
after two months of hospitalization.
A quarter of an hour after his last breath, the doctor on call
come to notice the death without a word, without a look,
and we are asked if we have planned the outfit.
I do not understand these words.
What attire should I have planned?
Parents never foresee the death of their child.
Until the last breath, they hope for the miracle.
So, dress her up
and then we are told that the stretcher bearers will pick her up
to take her to the funeral parlor,
where we will have to wait 8 hours to see her again.
We remain a moment motionless, incredulous, with his dad in the room,
after the stretcher-bearers took her to their cart.
Then, the door opens and we are asked, a little embarrassed and politely,
how long do we need to collect our belongings,
before the relief team of 5 hours, to redo the room.
So, we leave the room.
One last look at the name written on the Velleda felt gate,
and we wait outside, on a bench, for the opening of the funeral parlor.
So, to the unspeakable suffering of the loss of our daughter
adds a feeling of abandonment.
Our daughter did not miss anything from a medical point of view.
She even received exceptional treatment.
But is it just medical that we need
when we live the end of life of his child?
The hospital is not a place to die,
for anyone, let alone for a child.
There is a gap between what is played for parents
and for the nursing staff.
The priorities are not the same.
For the parents, it is to give oneself in accelerated,
all the love that a whole life would not be enough to give itself.
For the nursing staff,
it’s living faster and forgetting
what they perceive only as suffering and failure.
Yet the last few months with Carla Marie
were the hardest of all our existence
but also the strongest, the most intense.
What was being played was so strong in terms of love
that sometimes it was even like another world.
It was an ocean of love that managed to take the step
on all the horror of the situation.
And that’s also what many palliative care professionals report
who speak of mutual enrichment,
ultimate and beautiful moments of life at the bedside of end-of-life patients.
Yet, there is no Palliative Care Unit in Pediatrics
in our French hospitals,
and existing hospices are reluctant,
when they do not refuse to welcome children.
There is no support for families living these events,
nor support for caregivers just as hard-pressed,
no accompaniment to the extent of the cataclysm
that represents the end of life of a child, nor any care in the measure
of the ultimate love that is played in those moments.
Yet, a child dies every day of cancer in France,
and there are more than 4,000 child deaths a year.
What is represented as the most inconceivable thing,
the most inconceivable loss, therefore hits 4,000 families a year.
So why do not we accompany them better?
And why this emptiness?
Because the death of a child is so unthinkable that it is unthinkable.
Because as soon as you arrive, the best way to find it,
it is to forget it.
Yet, the consequences of the death of a child must be thought
because they are a reality
and that they touch a circle much wider than the only parents.
Siblings, often over several generations,
classmates, teachers of the child,
all the nursing staff,
no one is unscathed from this real trauma
and yet everyone is trying to pretend it did not happen
or did not arrive.
So parents experience the double pain of losing their child and denial.
They feel disturbing, run away and almost ashamed
because it is shameful to live such a fate,
because, of course, we must be a bit cursed
to be struck by fate.
Because we are scared and because we remind ourselves every time,
what everyone would like to forget: the possible death of a child.
So, not only do we not accompany the parents,
but in addition, a few months after the death,
our intimate society to parents to mourn,
as an invitation to move on, to turn the page,
to take on oneself, to spare others.
But, who cares really
when we encourage a parent to mourn?
Of the psychic balance of the parent, or of oneself?
Who has the most interest in forgetting this unnatural death?
The parent sentenced to live with?
Or his entourage who would like to forget about it
to regain his carelessness before?
So, if mourning means forgetting,
it’s just impossible for parents.
Because after the loss of their child,
the most difficult and the most unbearable is his forgetfulness.
So, what resource to bring to these families?
How to help without putting oneself at risk?
Because we are all helpless in the face of such a misfortune.
We all have the temptation of flight because we do not know what to say,
because we are afraid of being clumsy,
because we are afraid of not being up to it.
But clumsiness is nothing beside the escape,
which will necessarily be lived by the parents as a denial of their misfortune.
We must dare to talk about it to get parents out of their isolation
and to help oneself to live what one does not want to live.
But, what to say?
In truth, it’s less about saying than listening,
show consideration for the child at the end of life
because the end of life is still life and the ultimate life,
show consideration for parents,
for the misfortune that is theirs, without running away from them,
without acting as if nothing had happened,
to be there, just present and benevolent.
So, what resource to bring to parents?
Well, recognition first.
Then love,
because love is the ultimate resource
to live the end of a child’s life and survive him after
– the love of others of course,
but also the love of his child, again and again.
Because the death of the child is not the end of life
nor, especially, the end of life with him for the family.
Parents lose their child
but not the love of their child who continues to live in them.
So, let’s accept that even if the child is no more,
parents continue to talk about it, to make room for it,
without running away from them, without judging them disturbing.
And disturbing, they will necessarily
talking about their deceased child, sharing his pictures,
celebrating his birthday,
by making of his place of burial a place full of colors.
But we must not see it as a pathological and deadly behavior,
but rather a bond of love that persists beyond death.
This link is the key to resilience:
make room for the child so that he does not take all the space,
it is the challenge of supporting orphan families with a child.
I repeat myself often, like a mantra,
a sentence that Carla Marie once told me at 8 years old.
She said :
“Mom, behind every misfortune hides a little happiness. “
Behind the great misfortune of losing a child
hides this little happiness of love stronger than death.
One day someone told me
that my story multiplied his desire to live and share.
This is what we expose ourselves to by opening ourselves to ourselves, parents orphaned by a child,
not because our misfortune will help you
to feel lucky for your own happiness or absence of misfortune,
but because you will draw from our experience of this misfortune,
the immense hope of a love stronger than death.
Six months after the death of Carla Marie,
we created the association Le Point Rose
to develop pediatric palliative care,
to accompany people facing the end of life of a child,
to help them live those moments of ultimate love at his bedside,
and to find a form of resilience after, in love
– a pink dot to find the little happiness behind the great misfortune,
a pink dot to add life to the days
when we can not add days to life,
to make the blue around, more blue and deeper,
to multiply the desire to live and share.
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