Being a children educator for thirty-six years, Rosário Botelho always preferred to develop work with children their families, not only with children.

The twenty years spent working at Santa Casa da Misericórdia in Lisbon, the relationship with various, vulnerable social groups and her social intervention in degraded neighbourhoods, gave her the emotional structure that allows her to coordinate the team of Educators at the Santa Maria Hospital.

After seventeen years at Santa Maria, she asked the Ministry of Solidarity to be transferred to the Ministry of Health, "I wanted to be in direct contact, as I missed being around children". She only spent three years in direct contact, as she was quickly assigned as a coordinator. Her main function is to manage a team of eleven Educators (nine in Paediatrics and two in the Ears, Nose and Throat department) and to raise their spirits, each time it wants to escape. Behind the scenes, she organizes everything so that the team can be effective on the field. But in order to be creative, at a time when human and financial resources are scarce, efforts must be doubled. And it is possible. In her luggage, Rosario brings long stories about how to help others.

Each Paediatric service has one or more Educators: internment, outpatient and neural-development consultation, all identified as major areas of action. Distributed on different floors, they meet daily in the nurses' room for a situation update, and weekly in their room on the 8th floor, when they try to reflect on the situations at hand and take a short break to charge their batteries. Every day they are certain of one thing: they have no idea of what awaits them. This is the great challenge they have before them: facing the unexpected, they must devise a plan of playful activities that allow children to maintain their development and learning processes, as if they were in a normal environment.

Several of these children only come to the hospital for the day and stay in the activity room, being treated. On the other hand, some stay in the inpatient areas and others in individual rooms, which requires an adaptation of the help provided to each context. "Some of the children brought here with chronic illnesses are so young they can't even speak, and we prepare a development plan to accompany them, because they spend a lot of time with us. Other situations are resolved with less time spent in the hospital, so we offer an appropriate number of activities for them to feel as well as possible, meeting their usual routines (learning and playing). We aim to make treatments less painful".

Perhaps due to climate change, or because Medicine prolongs human life, which creates the possibility for survival when such was unthinkable, many children suffer too many hospitalisations, as they are unable to resist on their own and without the support of machines. Rosário and her team have witnessed many children depart this way. "They all leave memories, and many were adopted by our hearts".

Among the children that remain in her heart, two are connected to Rosário by blood and ask their mother not to confuse the stories from the hospital with those of her life. She says she does not provide her cell phone number to anyone, to protect herself emotionally, but she also says that everyone knows where to find her.

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How do parents react when you try to create work dynamics with their children?

Rosário Botelho: They react very well. I believe parents feel they can trust us and go home to take a shower, or eat, or look after the other siblings who are not present. Because we are here. This does not take away the importance of nurses or doctors, as we have very different roles, but we complete each other. Essentially, we help parents and teach them how to play with their children. To a certain degree, toys may be appropriate according to the child's development, but also according to their age. Another of our roles is related directly to the child. I'll give you some examples: we will playfully teach a diabetic patient about the necessary care and how best to face the new and tough battle that lies ahead. We regularly develop actions where I repeat this information, always in a playful manner and together with the other professionals (doctors, nurses, dietitians, therapists, etc). This is intended to raise awareness among children and their caregivers about the best ways to address the situation and the problem. This also applies to other pathologies such as high blood pressure, obesity, etc.

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We mentioned the parents, but how does the child react when he/she does not have time to adapt?

Rosário Botelho: And presents the following scenario: ill, fragile, with a nervous mother, an anxious father. When we enter the room they're in, several people look at us with suspicion and not even a single smile. Then, every day we get a little closer. We often approach the child through the mother, and when the child feels that we have conquered the mother, then the child also accepts our presence. Together with the parents, we try to understand the habits they have at home, and what they like and we can use to captivate them. I can't remember any situation where an Educator was unable to reach the child.

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How does the Educator feel in this professional but very personal environment?

Rosário Botelho: Dealing with death, for example, is very hard, and we are never prepared. We are not part of clinical area. We support each other very much when we face the death of a child. But even when death is not the issue, facing a child who is suffering, we have to talk and find the best way to stimulate them by seeking the best wellness possibilities for them. We must be capable of creating and imagining alternatives for the child and for the mother, who is desperate. These caregivers are very nervous because their child's blood is drawn and the doctors can't give them any diagnosis until they perform all the tests. These parents face so much information, that they end up looking at us as the bright side of the matter. We ask them to keep calm and provide safety, and we do not administer medicine or provide bad news. But among all of this, we have to look after each other. Then we go home and carry on with our day-to-day life, like any other worker, only that it's difficult to forget the suffering of the parents and children. It's a very demanding role.

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What is the largest demand you face?

Rosário Botelho: We must always be okay and support everyone. I've learned to be an optimist, which I was not before. I learned a lot while working within social neighbourhoods and became a very optimistic person. And here we also learn a lot with each child and each parent. A smile, which used to go unnoticed, now fills my day. So you see, the good part, what makes me love what I do and makes me jump with joy, is being in the hospital and having contact with kids. What tires me is the bureaucracy to achieve something, the lack of resources and the bad wages provided to my Educators. The Educators are included in three categories: some with a teaching career status, others with a graduate degree, and lastly, some that don't have degrees; but formally they all have the same function. How can I motivate them and ask them to be enthusiastic, if a missed day of work is deducted from their salary? In some cases, the time they spend here does not even count towards their teaching career, so they'll be starting from scratch if they decide to move on to another job. How can we keep our teams from feeling angry and sad? The team's well-being is very important. The tiredness is also connected to the lack of means to achieve simple things, such as the wear and tear material needed for everyday activities, like inks, canvasses, glues, paper. We often buy the missing material ourselves, or the parents offer them. The demands come from these issues, and not the children. But know that we also have cases that are emotionally difficult.

I can say that the activities carried out by the team of Educators help a lot in the recovery and acceptance of the disease.

In my first year here at the hospital, we lost a child suffering from a chronic illness, and I accompanied him during his last month. One morning I got here and he was gone. Everything collapsed. I went to speak to the Paediatrician, in tears, and she told me to always remember the last days and how they were. In fact, they were great because we made drawings, he drew caricatures of us all, we talked about death... He was well in his last days... This is what brings meaning to our presence.



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Do the children know what they are going through?

Rosário Botelho: They know. And they know when they're going to go. Two weeks ago, I provided support to a child in intensive care. The head nurse called me and asked me for support because the child was depressed. The father told me that his daughter had said she was ready to close her eyes. She was twelve years old. I went to her and she did not react, nor did she open her eyes. The next day I returned, she opened her eyes and smiled at me. I brought her the movies she liked. She passed away that night. But she smiled at me, at her father, she left her father play the DVDs, but she had been suffering for a long time. And she left soon after. Our children teach us unexpected lessons. There is another case of a four year old who was in grave danger, despite it not being visible. Her mother was in panic, but when I asked the child what games she liked to play, she replied: "I just want you to treat my Mother, because she is very sad". The good news is that she is well and full of life. My bond is not just with children, as I have very strong ties to some care providers.

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Mothers also need support.

Rosário Botelho: Very much, but I do not force this support, I give them space. I met a fantastic mother who came here for years and went through great lengths to take care of her son and to get him up. The son grew and became heavier and she always resisted, carrying him, treating him. Every year she calls me on my birthday and during Christmas. She lost her son, but sometimes she still comes to the hospital. One of these days she saw me and made me wonder whether it was a bad thing to see me, as she could be remembered of her son...

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Maybe it's good to see you, to remember her son more...

Rosário Botelho: Apparently it is. When we met, we hugged and we cried a lot, but at this point it was easy for me to cry with her.

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We constantly seek for answers to what happens to us in life. Do you have an answer to the reversal of the natural order of life when a mother, a father, loses a child?

Rosário Botelho: There is no explanation. I can't find a reason. But there is one thing that I can understand now and that I did not understand before. I spent ten years at the development consultation department, which accumulated with the coordination tasks, and I saw many things that bear meaning. When facing a child with a global developmental delay, and at first the child has no reaction, we begin our work with them, we caress the child and the child moves, and is able to identify a particular sound and to distinguish one person from another, despite not seeing. But it carries another meaning, because parents who lose a child with these problems, feel the same loss as any other parent. It hurts the same.

I have had professionally excellent Educators who left because the suffering of these life stories was too much for them to handle. We have to find the balance between distance and involvement, and this commitment is the most difficult thing to achieve.

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The children at Santa Maria Hospital receive periodic visits, essentially from football players, singers, actors and other anonymous people that show up and offer gifts and provide company. Luis Figo Foundation is the most present in terms of support for children, but other Foundations provide their help, like F. Oriente, F. Benfica, as well as the Medical School students from the Faculty that share facilities with the hospital. There are also cases like a Santa Maria doctor who, on her son's last birthday, asked people to offer presents to the children who are ill instead of her own son. It was a success. The hospital can also count on the Red Nose team, who is present twice a week. There are also the Best Buddies, a project made up of students from the Faculty Students Association with the intention to develop "best friends" with a profile that matches the ill child or teenager. There's also the Crianças de Santa Maria Association.

On June 1, and on other special occasions such as Christmas or birthdays, and by bringing together all of these aids, children receive toys. Aids are needed for this to happen, which means there's a list of wishes that everyone can help with: music boxes for babies, fluffy toys and toys for all ages, educational games, painting and drawing materials, paper, canvasses, paintbrushes and inks.



Elisabete Vaz, Helena Naik, Filipa Nunes, M. Manuela Xavier, Bárbara Camara, Daniella Alegre, Margarida Veloso, Rita Guerreiro, Rita Cruz, M. Manuela Ramos are the Educators who come to Santa Maria every day with the mission of teaching and putting a smile on at least one child's face. It is a great and hard challenge, but it is possible and that's what keeps them going.

Scattered around the Educators' room are photographs of the team, pictures painted by them, or by children who were hospitalised. Among coloured papers and cards are photographs of special days and outstanding people, momentums of history and nostalgia.



When talking about the Educators' coordinator, Rosário Botelho, there's always a good perspective that prevails, even when the scenery is darker. Because when she is told that she deals with suffering every day, she responds that she is essentially dealing with children who improve.

And that is a positive take on her life, is it not?

Positivo, não é?

Joana Sousa

Equipa Editorial