Nice to meet you, Izabel!

This is the fscinating life story of Dona Izabel, who’s been married to José for over 30 years, is Cristinna’s mother and Marcos’ and Pedro’s grandmother! A life where the most important thing is to live. That simple!

José: Eeeermmm… I’d like to go out with Izabel…

Brothers 1,2,3,4 and 5: No way, Izabel can’t go out with anyone…

Sisters 6,7,8,9: Hummm….really? Don’t think so…

Brothers 10, 11, 12, 13 , 14: Sorry, but forget about it… not with Izabel!

Sisters 15, 16, 17, 18: Ah…Izabel doesn’t go out with anyone… never has… not possible.

Dona Maria: What are you talking about? If Izabel wants to, Izabel can do. Go José, speak to your girlfriend Izabel…

And after some time…

José: Well, me and Izabel… we’d like to marry each other.

Brothers 1,2,3,4 e 5: No way, Izabel can’t get married…

Sisters 6,7,8,9: Hummm….really? Don’t think so…

Brothers 10, 11, 12, 13 , 14: Sorry, but forget about it… not with Izabel!

Sisters 15, 16, 17, 18: Ah…Izabel won’t get married… it wouldn’t work out.

Dona Maria: What are you talking about? If Izabel wants to, Izabel can do! I’ve raised up 19 children… each one of them has a certain way of being and do what they want to and what they can do. Izabel also has her way and can do whatever she wants to. Then, José e Izabel, let’s prepare everything for the most beautiful wedding!

This is a fictitious dialogue that I imagined happening in the 80s after learning from Cristinna the fascinating life story of her parents. The conversation happened via a WhatsApp connection, as Cristinna lives in the municipality of Morrinho, in Goiás State, where everyone from this family was born and live until nowadays.

And it was thanks to technology that Dona Izabel’s story became known. Cristinna, who’s 26, posted a comment on a facebook page surprising loads of people: her mother, Dona Izabel, has Down Syndrome.

So, let’s learn a bit more about her: Izabel is the youngest of 19 brothers and sisters, daughter of Dona Maria and Mister Manoel, married to José, Cristinna’s mother and Marcos’ and Pedro’s grandmother.

Dona Maria was a very strict mother who raised her kids under a close eye. It wasn’t different with Izabel. The daughters worked in the family’s tobacco culture farm and were in charge of looking after the house and the meals of such a large family. According to their mother, Izabel had to do exactly what her other sisters did. “My grandma didn’t raise my mum differently… so, if Benedita (one sister) learnt how to clean the house, so should Izabel. Because if Izabel doesn’t know how to do it, she’ll do it as many times as she needs until she learns it!”, tells Cristinna. “Does Benedita cook? Izabel has to cook too!”.

According to Cristinna, her grandparents never knew that her mother had Down Syndrome. The news came a few years after Izabel and José got married, when Dona Maria and Mister Manoel were dead.

Izabel and José got married in the beggining fo the 80s, when they were, respectively, 26 and 39 years old. They lived with Izabel’s mother (her dad was dead already) for about two years, until José decided to leave the farm labour and started working in town. There they moved to a new house, donated by the local authorities, where they live until nowadays. For a while, they lived well and alone, looking after each other. After 10 years of marriage, Izabel was upset because she couldn’t get pregnant. Her her siblings took her for a clinic in a bigger town, for an appointment with an expert, but there the doctor surprised everyone: he said Izabel couldn’t conceive because she had Down Syndrome. Well, the explanation turned out to be untrue, as soon after this trip Izabel indeed got pregnant! Cristinna was born after complications caused by eclampsia, as Izabel suffered from high blood pressure since childhood. One of Izabel’s older sisters spent the first month with the family, helping out with the baby and, from then on, Izabel and José looked after Cristinna full time.

Izabel and José didn’t go to school, but Cristinna did, and it was her mother who took her and picked her up everyday, sent her lunch and encouraged her to learn.

Cristinna remembers one episode well: “When I was 14, we were learning about chromossomes and syndromes and I said: My mum has Down Syndrome… The teacher looked at me and said: No, your mother doesn’t have Down Syndrome because those who do cannot conceive. Then I started to believe I had been adopted and went to talk to my uncle”. Her family then showed her pictures of Izabel’s pregnant bump. Even then, Cristinna went to check with doctors from her town, who reassured her that yes, Izabel could have children, even with Down Syndrome.

Talking about her childhood, Cristinna doesn’t remember it being different from any other children’s: her parents were always there looking after her, and she had lots of friends at school and from the neighborhood. It was just when she became a teenager that she started arguing with her mother, who was quite jealous and wanted to control Cristinna’s outings to parties or with her friends.

Cristinna got married and moved to a house near her parents’ when she was 17 years old. A few years later she had Marcos, her first child. She divorced and went back to live in her parents’ house. Some time later, she got married again but, this time, she moved to another town and had a new baby, Pedro. Cristinna tried bringing her parents to live with her, but Izabel and José didn’t like the change. They just love their house in Morrinhos! After a second divorce, Cristinna built her own house in her parents’ garden.

Marcos and Pedro are now 7 and 3 years old. Cristinna works at the Goiás Energy Company and until not too long ago, Izabel used to look after her grandchildren when their mother was away. Nowadays the boys are at school during daytime and Izabel only looks after them in the evenings, so Cristinna can finish her Management Course at University. “The boys, my children, are really energetic… they are ‘blessed’, and drive my mum crazy… but she’s fierce, she tells them off, puts them in the naughty corner if necessary… looks after them very well, feeds them. When I get home from university, they’ve both been fed, the youngest is already asleep and the oldest one is usually awake, waiting for me”, says Cristinna.

While I was talking to Cristinna via video conference, I had the chance to exchange a few words with Izabel, who was nearby, and asked her how was it to look after the children: “They’re hard work, but are also very good. They’re my treasure…”

Dona Izabel seems to be in good health. According to her daughter, she sees the doctor every month to monitor her high blood pressure, and wear glasses. Mister José is retired and, with his wife, makes patchwork rugs for sale. Yes, dona Izabel sews and embroiders! And her work helps towards paying the house bills.

Dona Izabel and Mister José story became known in the social networks, and the family is living thorough moments of fame. I’ve asked Cristinna how is it been for her mum. “My mum doesn’t feel very comfortable with people she doesn’t know… therefore, I have to prepare her… all the attention is surreal! A woman who has a 3 months old Down Syndrome baby came to see us… she said that, after seeing my mum, she started reconsidering her own life. After the lectures and workshops she attended since her baby was born, she believed she’d be a slave for the rest of her life. She heard stuff like ‘you have to separate their food’, ‘you have to do this, you have to do that’ and when she met my mum, she realized my grandmother didn’t do any of this. My grandma didn’t do any of this and my mum managed to develop and to be independent.”

If you only knew, Cristinna… your grandmother did everything! She gave her all the possible opportunities within this family and this made Izabel be who she is…

And Cristinna carries on: “You know, my grandma is being admired through my mum’s story, for the way she brought my mum up. But if it was nowadays, my grandma would have been crucified… because my mum was ‘forced’ to learn. And my grandma was very strict. I know she was a fierce woman. Imagine it happening nowadays. She would be crucified, people would say she was treating my mum badly, and it’s not like that at all… my mum hasn’t suffered any traumas. My mum had a happy life, like all her sisters.”

At the end of our chat, I’ve asked Cristinna if she would like to say something to people who have a Down Syndrome child or relative. She didn’t think twice: “I admire a lot mothers that don’t see the disability in their children, because 99% of the people I know bring their children up in a cocoon. They don’t get a chance. The parents even pretend that they’re encouraging, but keep their children dependent on them. I believe one needs to demistify this belief that those with Down Syndrome learn very little and need help. They need encouragement, they don’t need help. My mum was never helped, she was encouraged! So, for these mums… it’s a child, like any other else. We just need to offer support and let them take their own steps. At least, that’s what I believe in. I may not understand the side of a mother who has a disabled child, but I am a mother. I may not have a child with an extra chromossome, but I am a mother and my children aren’t spoiled. One has to demistify the old story: ‘oh, but my child is special…. ‘… all children are special! It doesn’t matter how many chromossomes they have. A child is a child, it doesn’t matter how many chromossomes they have.”

So, this story makes one think: How good was it for dona Izabel to live most of her life away from labels, expectations (or lack of) and prognostics. To live, as simple as that. It’s one of these stories that, the more you know about it, the more you start smiling… at least it happened to me. And what abou you, what did you think?

By Ana Claudia Brandão

Ana Claudia is a pediatrician graduated by the Instituto da Criança from the Medical School of the São Paulo University (USP), and is in charge of the Down Syndrome ambulatory of the Pediatrics Specialist Centre of the Albert Einstein Hospital in São Paulo and the Einstein Programme at the Paraisópolis Community. She’s also a volunteer contributor at Movimento Down.

Translation: Babeth Bettencourt

Source: http://www.movimentodown.org.br/2016/08/muito-prazer-izabel/