ITW n°45: Nathalie - mother of a K fighter.
Hello,
Today Nathalie tells us her moving story, that of a mother's battle alongside her daughter Carla Marie (9 years old), who tells us about her fight and her commitment now to her association “ Le point Rose ”; this wonderful idea which was born following the terrible ordeal they went through. A testimony despite everything full of hope and resilience, thank you Nathalie for the strength of your words.
Let's get started:
Who are you ?
First names: Nathalie
Age: 44
Professions: communications director
You decided to create the “ Le Point Rose ” association, how did this beautiful idea come about?
We created Le Point rose following the death of our daughter Carla-Marie at the age of 9 from a devastating brain tumor a year ago. This tragedy confronted his father and me with the inadequacy of pediatric palliative care and the inadequacy of the hospital environment to properly support children at the end of their lives and their families. The Pink Point then became obvious and a duty. The obviousness of its name first. Carla was a precocious, hyper-sensitive child who felt like a pink dot in a jarring blue world. Which she was also in the hospital. A duty also so that Carla-Marie's story is not in vain and allows other children condemned by illness to live their end of life differently, better surrounded and better considered. In the name of respect and love of Life: that of children of course, but also that of parents, brothers and sisters, and their loved ones. Because in the case of a child, the trauma is such that it can break apart families and entire lives. But life does not stop, life must be stronger than death. Helping families to experience the tragedy we have experienced differently is an essential key to their resilience. The Pink Point is here to give hope to all those who suffer from the loss of a child or the fear of losing a loved one. And it’s a fear that concerns us all.
To better understand the impetus for this generous and useful idea, can you tell us more about your personal experience with Mister K?
Our experience was very painful and not only because it ended tragically. Carla-Marie went from “a priori not serious case” to “lost case” with a terrible sequence where we had difficulty feeling confident and well supported. It represented an embarrassing case after a diagnosis error, and is a difficult case to live with for everyone, including the nursing staff, as in all cases of children. Nursing staff tend to experience this as a failure and tend, consciously or unconsciously, to want to get over it or quickly forget this “failure” if possible. Except that for parents, the relationship to time and to life is not the same, every second is precious to get used to the idea of death and to give each other love, a love that will be the key to resilience. In our experience, we had the chance to meet exceptional people, with a rare humanity. But they owed their qualities only to themselves. However, we must be able to guarantee each family this human support without it depending on luck or the personality of each person. At no other time is the demand to do well as great as at the end of life.
Can you summarize for us your story of being close to K fighter?
Carla-Marie was extraordinary in her fight against illness, with infinite courage and an ability to take the best out of life at every moment, even when the progress of the illness deprived her a little more of her abilities every day. She gave us all a life lesson. The lack of consideration that I sometimes felt towards her in the hospital, which already considered her a bit like a “half-life” because “lost” revolted me all the more. Everyone close to K fighters must suffer from feeling helpless. But never as much as a mother or father powerless to save or even relieve their child. It's an indescribable feeling. It was the most difficult experience of our entire lives. But also paradoxically the richest and the strongest, the most intense in love. Because, when the days are numbered, there remains love; the love that makes the days and hours more intense, and allows us to give ourselves in rapid succession what an entire desire sometimes cannot give.
What K did Carla Marie get:
An infiltrated glioma of the brain stem. It is an unfortunately inoperable tumor which only affects children and which we have not yet been able to cure despite new treatments currently being tested which leave much hope. I had the chance to meet and talk with Doctor Jacques Grill from Gustave-Roussy, a specialist in these childhood tumors who took the time during Carla-Marie's illness and after the death to talk to us about it and to explain current research progress to us. I am very grateful to him for his humanity and the hope that he knows how to embody on a daily basis for all the children he follows despite the terrible illness against which he has been fighting for years and which still kills 2 out of 3 children. demonstrated that you can be a pediatric oncologist specializing in one of the most deadly Ks in children and... not necessarily be fatalistic. He was aware of the importance of fighting to give these condemned children even just a few more months or days. He had this very beautiful phrase, when talking about the children he was following: “No one knows what a day, a week or a month of extra life can mean for them”.
What are the nugget phrases that we could have said to him or/and to you during the K and which could have been avoided?
The worst of all for me: “What’s the point?”. What is the point of trying radiotherapy which can bring about a regression of all the symptoms, since in the end there will be an inevitable relapse (sometimes 6 months, 1 year, 18 months or even 2 years later!!). From doctors who are supposed to embody hope, it’s terrible. And even more so in the case of a child's life.
And the worst for Carla in a tone of moralizing reprimand, when the illness no longer allowed her to speak or walk: “Carla-Marie, you are big, you must understand that you have a serious illness which requires very heavy treatment” . I remember Carla covering her ears and closing her eyes. How can we imagine that she didn't know that what she had was serious??
And after Carla's death: “Nothing will ever be the same again” or “Nothing can ever erase the suffering”, only time can soften it”. Or even “We don’t have the words”. This is very common and understandable. But when you experience this suffering at its most acute, being told that nothing will ever be the same again is terrible, it's as if I had been told that I was going to suffer like this all my life. Might as well end it then and leave with her. What I needed to hear was that I was going to be able to laugh and still love life afterwards, that the essentials of life were still there with those I loved and that I would keep an indestructible bond alive and well. , a permanence of life in love. And words are never in vain, contrary to what people say. These are anchor points; we need to hear even clumsy words to make sense of the senseless and feel the affection, the love, the compassion that is shown to us. It is the human who then helps and saves.
What did you do to change his mind, were you able to find the right words?
We loved each other, we laughed doing what she loved as much as possible, having fun with the antics of the little puppy we had given her. I don't know if I was able to find the right words because in the end she no longer responded to me. But we were together, day and night, often stuck together. And I know that for her (and me) it was the greatest comfort.
I wanted to read The Little Prince to him during his last days and the passage where to join his rose and his planet he must abandon his body, like an old bark. I said to myself that perhaps this would help her to leave us more peacefully...
What practical tips can you recommend to us, from your daily life and yours?
1/ beauty:
I always made sure and she also demanded that she wear the outfits she liked and that she was pretty, well-groomed, perfumed
2/ look:
I put her in outfits, trendy t-shirts for her age that she liked. It was also an essential link with the world of his childhood to preserve.
3/ daily:
Continue to do what you love. Carla recharged and reassured herself with her favorite activities and daily rituals
4/ food (did you prepare good dishes for him):
YES! It was one of the important pleasures for her in her day and I felt so much like her mother while preparing the dishes she loved.
How was your life in the medical profession? Did you find the answers you were looking for, were you able to understand everything?
I had the impression during the two months of hospital experience which became daily in the last weeks of being in hostile land. Every time the door to our daughter's room opened, my heart sank and I shielded myself, preparing for the worst, often with moral pressure or guilt. After the diagnostic error, then the partial information that we had been given, we no longer had confidence. We never knew if we were being advised in our interests or in the interests of the service. Not feeling confident or surrounded by compassion when you are experiencing the terminal phase of your child is terrible.
Has this same medical body been there for you too, to support you, answer all your questions?
Far from me the idea of victimizing us, or even exaggerating, but our experience and our hospital support added even more to our suffering. And this is precisely the challenge of the Pink Point: To remove as much as possible the sources of avoidable suffering for families experiencing the end of life of one of their own.
You were always at Carla Marie’s side, tell us:
Carla-Marie and I were so close that it was just unthinkable that I was not at her side at all times. I spoke to him constantly on the microphone during his radiotherapy sessions. I accompanied him and held his hand during every MRI/CT scan. And I accompanied him to the operating room during his surgical procedures or anesthesia. And that still wasn't enough for me. So to better experience our separations when they were non-negotiable, I hid a stone near her, a duplicate of which I kept in my hand so that we remained connected in an almost magical way. I realized that during this ordeal, the magical thinking rituals that we do to reassure ourselves against all rational logic are infinitely precious. And they also talk and help a lot of children who are even more familiar than us to use magical thinking.
What was your first feeling when you first met the treatments (chemotherapy/hospital)?
The first appointment to present radiotherapy remains a nightmare. It was December 24… and it was a few days after the biopsy that worsened Carla's condition. We made the decision to go alone without her to this first meeting to avoid spoiling what was going to be her last Christmas a little more... But after this very difficult first meeting, the whole team of radiotherapy was truly amazing, doing his best to talk to Carla and reassure her. These remain moments of great sweetness and beautiful, very comforting human compassion in all the painful memories that still haunt me.
Did you get information on the internet?
IF YES: What would be the useful (internet) links that helped you to give you strength, and those to recommend to friends and family of K fighters?
I first placed total trust in the nursing staff and accepted everything they explained to me about the symptoms and tests to be done. He wanted to be reassuring and I really wanted to believe it. Then after several weeks, still without a diagnosis and faced with certain inconsistencies or questions left unanswered, and an acute instinct from a mother who sensed unexplained fatigue or worrying micro-symptoms in her child, I started looking. And then horror, while typing Carla's symptoms, I came across the diagnosis of the illness she had and a testimony from parents describing almost week after week what would turn out to be our experience too. Faced with what I read, I contacted all the medical representatives I knew to ask them about the possibility that Carla had this illness, despite all the reassuring diagnoses I was surrounded with. And there is silence or avoidance. It was after having managed to recover, not without difficulty, Carla's medical file, and an appointment with Dr. Jacques Grill of Gustave-Roussy in Paris two months after Carla's first symptoms and examinations in Marseille, that the verdict fell. : brain tumor, infiltrated glioma, inoperable, with a high probability of grade 4 given the rapidity of the worsening of its symptoms. After the biopsy, and more than 10 days of unbearable waiting and hoping that the grade would not ultimately be the worst, with no news, I contacted the neurosurgeon who responded to me and announced after reading the results which had come back a few days earlier: “It’s nasty, very nasty yes. We have to act quickly now.”
What were your good plans to take your mind off things, get some fresh air, and recharge your batteries?
What did you tell yourself to go the distance / what did you do?
I connected to life and to each of the positive physical sensations: the pleasure of scalding water in the shower adjoining the ward corridor. The pleasure of hearing Carla breathe, the pleasure of the smell of her water, that of massaging her. The pleasure of listening to pieces of music that we loved with her, the pleasure of eating a hot meal with her dad during the day. The pleasure of the little attentions we had for each other... Really very simple things.
Among the things that helped me the most? Deezer which allowed me to listen to everything according to my desires and needs. My smartphone and its connections to the internet and social networks. I couldn't talk on the phone. But I remained connected to the world and to others and that helped me a lot. Some reading was also valuable. Especially those recounting experiences close to ours and which allowed me to feel less alone in this experience. Others had experienced the same tragedy and had survived and even today they still managed to love life! Those also talking about experiences of temporary death and the testimonies of doctors like Eben Alexander or Jean-Jacques Charbonnier. Testimonies allowing us to share what we feel very strongly within ourselves at the end of life: that life cannot end like this, that love cannot be extinguished with the heart, that something infinitely louder is played. Reading these testimonials from doctors was a great comfort, allowing me to imagine the worst without completely collapsing.
Sometimes I also went out and ran to feel my muscles and my body alive, I ran like Carla ran. I even climbed a tree without the ease she had to do it, to get closer to her and allow her to experience a little through me what she could no longer experience. I even danced one day, hidden on a vague hospital train, waiting for Carla to come back from the operating room to overcome my fear and our distance. To become for a few minutes more than music and more than auditory sensations and forget all my thoughts. So many irrational things that take on meaning and almost vital importance in such moments.
Were you able to have an “almost normal” life, see your friends/relatives?
In your daily life, were you able to escape from the “illness” to move forward and be productive?
during the months of Carla's illness, I was impressed to find so many resources within myself, physical, psychological, moral, spiritual, intellectual... Faced with the worst of the worst, human nature has infinite resources that we can find within yourself. I was also amazed by the generosity of certain people and their investment alongside us. People who are essential and who are not always the closest. Their completely selfless empathy and generosity was incredible and made me feel lucky in our misfortune to receive so much love.
Were you able to talk freely about it to your loved ones? Did you feel supported/supported/understood?
During our hospital experience, when Carla's condition worsened, it was almost impossible for me to communicate with anyone other than her dad who was going through the same thing with me or the doctor I trusted (Dr. Grill ). I even found it hard to bear the question: “How are you today?” It was getting a little worse every day...
What advice would you give to other loved ones to arm themselves with courage?
Be lucid, face the reality of illness, never escape this reality, but never give up believing in life and love whatever the diagnosis. Until the last breath. Because life is the strongest, whatever its form (and we don't yet know all its forms!). And to feel the deep love that carries even in the moment of loss of a loved one.
What has this ordeal changed in your life (your vision of the world, of those around you, any disappointments? Any great discoveries despite everything?)
It's a real upheaval as the death of her child is so unnatural. We bring him into the world imagining that he will be there for us, that we will see him grow and that he will continue to live after us. We see this as a terrible injustice and a dispossession of something due. The first thing I had to learn was that nothing in life is owed. Everything is a gift. I had the chance to be the mother of an extraordinary little girl and to live and learn for almost 10 years alongside her, experiencing a deep and exceptional love. I will always suffer from not seeing her grow up. But I know that the number of years lived by his side would not have added to the strength and intensity of our love, everything was already there within reach of our hands and hearts. The end-of-life experience is a life lesson for everyone because it raises awareness of the nature and value of life. A multitude of moments of life and happiness that must be lived intensely without waiting for the next ones or regretting the past.
This tragedy also freed me from fear: fear of death, fear of losing those close to me. I know today that even after the death of a loved one, love and life in their most beautiful and intense ways are still there for us. And that behind this ultimate suffering, there is an equally ultimate form of love which supports and helps us to continue and live fully, without being more than a shadow of ourselves.
After such a life test we understand perfectly the reason why you created this wonderful project, tell us in more detail the values of your Association:
Carla-Marie wrote a very beautiful story which inspired the name of the association which ended with the following words: “The moral of the story is that even if we are different, we must stay with the others” . When the illness began to show itself and handicap her, she understood that the solution to the ordeal of the illness was openness to others and especially not isolation. This value is essential. In the ordeal of illness as in that of the loss of a loved one, survival and resilience lie in sharing, affection, love, humanity. And it is an essential value that underlies our action.
Another essential value of our association is also inspired by a little phrase dropped one day by Carla, at barely 8 years old: “Behind every misfortune hides a little Happiness”, she told us one day, very cheerful and reassured to do it herself. Today behind the immense sadness of his loss for all of us lies the happiness of love and hope for all children at the end of their lives and their parents. The hope of an indestructible bond and the permanence of life in love. This is the cause of the Pink Point and the action we are taking to better support and help families in this difficult ordeal, which we must survive to bear witness to and learn to love life even more passionately for what it offers. more beautiful every moment.
In conclusion, our values are those of LIFE, LOVE and LOVE of LIFE.
Because it is in the name of LIFE that we carry out our action. Better support and rethink death to honor Life! Adding life to days when you can't add days to life. Yes one day we will die, but every other day we will live!
What are your ideas for the future?
Expand our action and our mobilization to adults at the end of life and contribute to changing mentalities on these fundamental issues of end of life, death, bereavement to help us all live better with this often taboo reality which is part of our human condition all.
Links to follow you (site / social networks):
Le Point rose – 7001, avenue Mattéoda 13480 Cabriès
Email: lepointrose@yahoo.com – Tel: 06 11 05 06 79
Website: www.lepointrose.org
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Thank you Nathalie, for your words and your wonderful commitment.
Beautiful day
Charlotte
