Lucian and Simona
House-Parents.
Simona: My name is Simona and I have been working for
Health Aid since 1993. …Presently I have eight children - six boys and two girls. The youngest is two, and the rest are fifteen, sixteen, seventeen.
How did you come to be social-parents?
Before 1993 I worked at a printer’s. I got involved with this
organisation because of my husband, who knew Miss Anne [Anne McNicholas, of Health Aid UK] for some time. He brought me with him to the organisation.
Lucian: I work in the aviation industry, and between 1990 and ‘91 I collaborated with Health Aid-UK, as it used to be then, through a colleague who knew Anne McNicholas. We helped in various ways. Practically speaking, the organisation’s foundations were laid with our physical help, not administrative or…
Just through talking about the need for opening a new house, we were asked if we wanted to become social
parents by the oraganisation - to look after some children. We weren't told - what? How many? How…? We knew what was it about - what kind of children they were.
It was difficult for me to convince my wife to begin. There was a certain fear then - there’s not any more - because little was known about these children, and this illness. But being united - this is what characterises us, we are united, and our relationship is based on trust - we said we should try. At the beginning, indeed it was very difficult.
How did your friends and family react? Did you keep the job a secret?
S: I personally told my parents from the beginning. At that
time we hadn't moved yet, and – well - they weren't too pleased. They had some fears - like we had - but in time they got used to it, and the same with us.
L: There were positive and negative opinions amongst our families and acquaintances, but we convinced them little by little. When we had gained knowledge about the illness, we convinced them through booklets and explanations about the real situation.
S: They visited us.
L: And it’s not as dangerous as was thought then. There has been a great evolution - much more is known about this illness… …but it was difficult, we must admit.
Did they avoid you?
L: No - not in the family, or among our friends. But when we were with the children on the street, we had problems with the neighbours.
S: Not all of them.
L: Not necessarily those immediately around us - but people from the neighbourhood. They avoided us and pointed the finger - "They have AIDS ". This was at the beginning. But in
time, perhaps because of the way we are, and the education we gave to the children - to respect the neighbours – they began to like them. It got to –
S: Yes, but at beginning the children used to say hello to the neighbours and -
L: They did not answer to them
S: No, they turned their heads away
L: So, in time, relations became normal. Even more than that; when we left and moved here the neighbours were sorry to see us go…
…We are on good terms with our neighbours. Especially as five children live opposite to us - there is another girl somewhere here... We don't have very great problems. There are some noise issues, but this is a children’s home, you can only expect that.
Can you tell us about your very early days with the kids?
S: Oh! Poor me... So, on the first day, there were - they
were bringing me - I knew there would be 8 children. 4 boys,
4 girls. And this happened in 1993. And…
L: It was important that it was on 13th of December - right before Christmas - so the preparations were bigger, so that they could be received properly.
S: They used to bring them for visits. There were 3 girls with bigger problems - more damaged, more...
So they brought them to visit, to see the house, and then took them back to the hospital. And again they brought them to visit, and returned them. The house was not ready. They were painting and plastering it -
L: We participated in this, too. We slept there.
S: And one evening she came, and said: "That's it! The children remain here tonight." We had no cooker, no pots, no fridge - we had nothing. Naturally, I was quite scared. I said - but how?
There was a nun taking care of them, then - her name was sister Teresa - and I told her: How can they stay here? I have no food for them! They were four years old. They couldn't even speak, they couldn't... I said - OK, they stay, what else can I do?
At the beginning they slept on folding beds. We had three aligned like at a hotel… …On the first night, at 10 o'clock, I said: Let's go to sleep. Let's go to bed. …"I don’t want to sleep!" "Why should I sleep?" "I don't wish to sleep!" "I want to go out!"
After I succeeded to convince them that they must sleep, I sat down in an armchair and start crying. I said to my husband - I won't stay here more than two weeks! I won't! More than two weeks, I won't!
So, this is my first day. Then, little by little...
L: Little by little we've made important steps.
S: Later we were brought two boys, then another girl, then another two boys...
Will you bring others into the home?
S: No! …I don't think so. At that time I was very young. I was 23.
What is known about their biological parents?
S: …Some children are visited by their natural parents. But honestly, it's not... For the children, the natural parents are not seen like real parents. They don't know him - he meets once in 5, 6, 10 years - so he can't be called ‘parent’…
S: …For example, from those children - nobody knows anything about -------. Absolutely nothing is known about his parents. If I'm not mistaken he was found in a train or a railway station. So nothing - not his mother's or father's name.
Then ------, whose parents visited when he was younger - for 7 or 8 years has not been visited… …there are another two girls who have parents, but they don’t go home... …one is 17, she has a mother, father, brothers, sisters - I think five - and they want to take her home with them, but she doesn't want to go home…
Why?
S: Well, she has got some difficult parents. One is alcoholic, the other schizophrenic… So, they are ...her parents. She doesn't want to see them.
How is the house run? Do the kids help out?
S: Yes, we go shopping together, or to the market place. When we have to buy something, clothes or food, we go together. They help us with ironing, you know, dusting and sweeping.
So, you rely on them
S: Yes. And they must be used to this in the future - to be able to manage themselves. They have to know how to cook, make the bed or wash socks.
L: During the holiday or at weekends the girls cook – taking it in turns, assisted by an adult. Presently they can't do this - because it’s the end of the school year, and they have to study for exams. With the boys we do the garden – anything - we dig, paint, plant flowers... …We have hens, before we had rabbits…
Have you experienced prejudice against HIV since becoming social parents?
L: It would be a lie to say we hadn’t. Even on the TV we can see a lot of prejudice…
…The children are marginalised by their colleagues - by some of them, who don't have enough information. Their parents aren’t informed, so neither are their children. Our children are rejected and ostracised.
They have grown to understand this situation very clearly. They have been prepared - they know what this illness is…
…they were explained that it means daily treatment... …they
understood that their life depends upon this; that they must take them, and must feed themselves well, have good personal hygiene...
S: They were taught to protect themselves from those outside, and to protect those outside, too.
L: So in our view, they were prepared when they went out into society. But they hit a wall there, which shocked them for a while.
How did they react?
L: They had fits, crises… they didn’t want to go to school anymore, they came home crying…
S: We even had one girl - we took her to the psychiatrist - she had a very serious nervous breakdown.
She did not eat any more, because her schoolmates said to her that she was fat. And she effectively refused to eat. She went to ------ Hospital, and had treatment there [for psychiatric problems]…
…[her classmates shouted at her] - things like you’re ill, get out of the classroom, get out of my desk, don't touch me…
Actually, she did not mind being excluded from the classroom, or the desk - but being called ‘fat’. And then, that was all. She blocked herself at “I am fat" and...
[Pause]
L: She even refused her treatment. She did not want to take it any more.
S: Yes, because she wanted to die, she lived for nothing
L: What's the use of going to school? Everybody mocks her...
How old was she?
L: Last year -
S: - This happened just months ago - in the autumn. And it lasted for a while.
L: She was 15.
S: It lasted for 4 months, this problem...
L: Yes. It's the age when they see, feel - they want to have relationships with those around them. Most of them have friend-relationships…
With [HIV] negative friends?
S: Yes, negative - colleagues from the school .
L: Colleagues who know something about this area, who understand and help them - they stand beside them. The impact was actually stronger at home, where those who are not in the high school saw what happened and got scared, as well.
------- for example, said: "I don't even want to go to school any more. They smoke there, they call you names."
Here, in the neighbourhood, they had gotten used to it. It wasn't a problem any more. When the one from the high school said what had happened to her, the others got scared, too. But it passed. Little by little, ------- kept going - she is having her exams now, she is passing the year. She got beyond that stage - there were some problems - because society doesn't accept them fully. And because some prejudices still exist.
…Their evolution is normal, from our standpoint – the children are 15, they aren't [little] any more. We think they've behaved like any other normal child, from any normal family on this earth. But they've grown up, they’ve had culture, gained knowledge and they see life differently...
S: They have other needs...
L: Other needs, and questions come out of this - Why am I the only one doing this and he doesn't? I want that stuff, too… If for some years there has been group education [and development], now each one has his own unique personality. You can't generalise. No, you must cultivate each one's individuality. Let them develop in their own way.
And - it's quite natural - problems come out of it. Not only for us, but amongst themselves… …They fight, curse, pull their hair, I don't know, answer back to each other...
S: Some of them go into the bathroom when it's busy – the boys going in on the girls…
L: They peep through the keyhole to see. If we remember
well, we used to do the same kinds of things. The one who says he hasn't been naughty tells lies. They are sometimes naughty.
Perhaps this illness makes them more irritable - sometimes they are refractory, have no patience, and there are periods like ------'s, when nobody could please her. Not only she did not want to go school anymore, not only was she “fat” and not eat anymore - but even with the others from the house, with the children who were her brothers and sisters - they call each other brothers and sisters because they grew up together - she was changed…
S: What can I say? It is difficult. We'd be better to have 20 small ones than of 5 big ones.
L: It is a children’s home - they want something else that we can't give them. You can't do this here - they want, I don't know what type of dresses, certain shoes - certain freedoms that are not possible in a children’s home. If you give something to one of them you must give it to all - you can't make differences.
S: Recently we went shopping for the seaside, and we had to buy bathing suits for the girls. "I don't like this," "I don't like
that…" They liked only one million lei bathing suits. And I told them - "Well, ------, we don't have that much - we can't afford to spend a million lei on a bathing suit which you’ll wear for 3 days. Or perhaps not at all, if it rains.” “But I like that one, and I want it,” I mean...
L: It's fashionable.
S: To cut a long story short, I convinced her. We got a 400 lei one - but I don't have a 400 lei one myself. That's it.
L: Three or four years ago they weren't interested about this at all. You just bought it.
S: The boys don't want slips. They want trunks, the other ones are out of fashion. And what can you do? You buy them that type. They are... …we were the same at their age. But it is difficult.
What worries you?
S: I guess the future. I mean - I don't know how they will manage themselves in the future. Because up till now they have been used to coming, sitting down at the table - the first dish comes, the second dish comes, the dessert comes, stand up, and done! But now they must make their bed, they must clean the table, they must wash the plate they ate from, they must wash their socks...
And they aren't too pleased. They do it, but reluctantly. And in the future, if they live by themselves - maybe they'll manage - but the beginning will be very difficult, I think.
L: I think that this stage we are going through now is normal – their not being too interested in tomorrow - though it shouldn't be so. Our recent preoccupation has been to make them think about tomorrow - and to prepare for it. Because - as my wife has said, they don't think about it. It's normal, it’s their age. Neither did we - when I was 16 or 17, I wasn't thinking - I didn't care.
But, for them, because of their problem, we think it will be
more difficult. Starting at a certain age. What is not clear, and we don't know, is how social integration will be achieved? Society is already rejecting them, but from 18 onwards, what will it happen to ...absorb them?
S: How will they earn a livelihood, and how will they manage? There’s not long to go - I mean, two years pass really fast.
L: It doesn't seem fair to us, taking a four-year-old child, working through his problems with him, giving 15, 18, 20 years of life - that's how long we’ll be with them - and hearing one year later that he has been stealing. Authorities and society should find firm solutions for them - so that they can find their own way - though they should be normal as any other. The constitution is for everybody - they don't say there “unless you are ill”. You should have an equal chance to learn, talk, anything.
There isn't long till then. …We are thinking... hoping, Lord, before they grow up, the problem will be solved - a cure will be found, and they will be OK. We've had this hope from the start, and we are still hoping. Because science and technology evolve, and it will probably be found. With luck they will be OK.
…Starting from age 18 they are responsible for what they do, and they must manage by themselves. It is obvious they
must be helped as much as is possible, but... what will they do?
What should they do?
The good path is to go to school and get an education. More or less easily, but at least to learn.
But, concerning a job, there is no guarantee. These problems are stronger than us, because we can't intervene to help them - we are... we can't do anything at our level. But after having been with them so long, it’s impossible not to think – “Wait a little, where are these children going to?”
…Can you tell me the joys that this role has brought you?
L: There have been a lot.
S: We had a girl, -----, …and between ’94 and 95 her health took a very great fall. And we thought we would lose her. She was in the last stages - nobody gave her a hope, including the doctors. I went to Colentina Hospital, to Dr. ------ every day, and I begged him to do something – otherwise she would perish. And a new treatment appeared then - I don't know which one. Dr ----- said – “I can give her the treatment, but it might kill her or save her…” I said – “There is nothing to lose”.
She got well miraculously. She is fine now - she doesn’t talk to me much these days (Simona laughs) - but she is all right. It was a joy.
L: Moments of joy can be considered every birthday, with cake, music and guests. There are the feast days, their holidays, their successes - when they pass an exam or come home and say - “I got an A”. Even when you never thought she could do it, but she managed - it is impossible not to be happy.
What are your hopes for the future?
L: So many things, you can't...
S: That one day they might be able to find a job - to support themselves. That they might be healthy.
L: That they might live long...
S: …to see them with children, rearing children as we reared them…
L: We hope they will grow mature – that they may be responsible and useful members of society. This is the way it should be.
…You feel satisfied when you see that they have ambition. There is -----, who so wanted to pass an exam that he asked for permission to study until 12 and 1 at night.
S: Yes, he wants to have a job, to get money in the holiday.
Will it be possible?
S: We are trying. He said he has friends who are unloading newspapers from trucks in the market. I told him it was not a very good job for him - because it’s difficult - he might find something else... I don't know, we might speak with the organisation. He would like to. He came with the proposal. This is important - he isn't just waiting.
Are they starting to form relationships?
S: The ones from here don't. I know that ----- from ----- House has. ------ isn't one to think of girls. He says he has plenty of time...
What about the girls?
S: Yes, they take an interest in boys… I have one of them hiding something at present - I know she likes someone, but she is concealing it, she won't say - she doesn't speak about it.
The others show me – “Look, I wrote to Dragos, or I don't know who… Look what I wrote to him!” I say to her – “Don't write this, it’s not good. Why must you tell him that you love him? Let him say this to you!” – “Well, he doesn't say” – “well don't tell him either.” You know girls, they are different characters.
Was it difficult for children to accept their diagnosis? How did they found out?
S: We go often to the hospital. They used to question constantly – “Why do we go so often to the hospital? Why do we take medicine?” …They asked why they take so many pills, why? Why? And then, Mrs. Tina - the head of Health Aid Romania - gathered all of them, and explained to them what was going on - what were their chances; the truth. She did not lie to them.
Some of them understood, others not - they understood in time. Some of them are still foggy today, they don't comprehend exactly what goes on - it's according to their faculties.
What are your plans for the future?
L: I guess we'll keep on going with new family members - like ------, and some other small children might come…
You still have the energy to take others?
L: We go on.
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