I was one of the founders of this parents’ movement.
The journey began even earlier than that. In 1993, my daughter had recently completed her cancer treatment, and little by little, life was returning to normal. At that time, the situation in pediatric oncology services was very different from what we find today (in terms of treatment success rates, available information, logistical conditions, and existing human and social support).
Therefore, it was mainly through contact with other families who were living or had lived a similar experience that we found our models of hope and the strength needed to keep fighting. We gradually became aware of the need for a parents’ organisation and began to plant the first seeds.
In 1994, encouraged by Dr. Gentil Martins, we took part in the 1st International Meeting of Associations of Parents of Children with Cancer, in Spain. The contact with these organisations was a great source of inspiration and helped us define the model of action we wanted to develop in Portugal.
With the collaboration of the four Pediatric Oncology Services in the country, we organised several parents’ meetings, inviting them to join this project. From the very beginning, we achieved nationwide mobilisation around this movement, which would later lead, in October 1994, to the formal establishment of the Acreditar Association.
And it could only be called that — ACREDITAR (to believe). When our children are diagnosed with cancer, what we seek above all are reasons for hope.
Many times I found myself imagining that the only solution would be to run away — to escape from everything and everyone. To isolate myself and only return when everything was resolved, when everything was fine. They were moments of immense despair. But of course, I could never leave my child.
Whenever I could, at the end of a full day in the hospital, I would leave my daughter in the care of a relative or friend and, for two or three hours, go out with my husband. We would go out for dinner together without rushing, talking about our fears or not talking about anything at all. On the worst days, we would go to the cinema. Whenever we could, we tried at least not to be in a hurry and to enjoy the moment. If we couldn’t talk, we would at least try to be close to each other… I am convinced that those moments gave us the strength to go through it all.
During my son’s illness, I made a point of listening to what he said, and also to what he did not say. Often he did not speak about his anxieties and fears because he did not want to add to our suffering. On the other hand, I often told him a very simple phrase, which contains the only thing that truly matters to say: “I love you.”
I had to make a huge effort to be able to say the word ‘cancer’ myself and associate it with the hope I needed in order to keep living. It was only when I managed to overcome my fears and embrace hope that I was able to speak openly with my daughter. This openness and trust was always a defining element of unity between us and gave us the security we needed to face the treatments.
During that period, we always tried to take turns in providing support and attention to our other children. We did not avoid their questions, but we tried to convey a positive message of hope, emphasizing and valuing the importance of their cooperation and understanding.
This atmosphere of solidarity and openness was very important for all of us and strengthened our sense of being a family.
At first, returning to school was a painful moment for our daughter. She was not well accepted by the other children because of her remaining limitations and her physical appearance (she still had large bald patches due to chemotherapy).
It was necessary to prepare the other children and the teachers, in order to encourage their support and acceptance. Afterwards, everything went smoothly and she integrated without any problems. Today she is a very healthy teenager, at peace with herself and with the world.
The feeling of helplessness in the face of a situation that frightened me, and that I felt unable to control, often led me to have the most instinctive and primitive reactions that I had previously been unaware of. All the survival instinct came to the surface — the ‘protection of the young’.
I experienced feelings of anger and helplessness many times, such as when Maria was repeatedly pricked to find a vein; when a nurse or healthcare assistant spoke in a harsher tone; or when we had to wait a long time for treatments… It was not always easy to control these emotions.
Our son, at two and a half years old, went to nursery school still not fully up to date with his vaccinations. We wanted his illness not to prevent him from following the path we had planned, and for him to be in contact with other children in an environment conducive to his growth and socialisation, different from the hospital setting he had known before.
Today, at the school he attends, he is a lively, cheerful boy, friendly with his classmates and fond of play. He gets on very well with his teachers and teaching assistants. He is known by all his brother’s friends and is quite the heartthrob among the girls. Over the past few months, he has become a real little rascal: he has already split his head and his chin, and, much as we wouldn’t wish it, it seems he is not done yet
The uncertainty about the future is a source of instability that makes our daily life much more difficult. Our son may die or he may recover; we simply do not know. One way of coping with emotional instability is to understand the importance of hope. Without hope there is no future; it sustains us, provides energy and a reason to live, both for us and for our son. There is always something to hope for. At the beginning of the illness, we hope that our child will recover quickly. If the illness worsens, we hope that he will not die. And if nothing else can be done, we hope that our child can die with dignity and without pain.
It was especially during the most tense and distressing moments that I grew closer to the other parents. The support we gave each other, the closeness we felt from living through the same experience, and the ‘arguments of hope’ we used to support one another, often ended up working for ourselves as well, becoming a source of strength and comfort in my own pain.
There are days when we completely lose hope. It is very difficult to live with sick children, with the fear of death, with the side effects of treatment, and often with a family life in rupture, but we must believe that hope will return.
Ao subscrever está a aceitar a Política de Privacidade da Acreditar. Damos muito valor à sua privacidade e por isso garantimos a confidencialidade dos seus dados.
