I remember, when I was a single child, always wanting to have a sibling and the day I got the news I was thrilled, finally. I have this image of me telling everyone in kindergarden I was going to have a brother. I was 6 when my brother was born and it was almost Christmas, so it was our happy Xmas gift. I was always superhappy and excited with having a new baby at home, little did I know he was special. He looked like any other baby, no, actually much cutter. He had slanted eyes and a beautiful smile. I remember he would laugh with my parents, but not with me and that used to make sad, I thought he didn´t like me as much or that I was not as funny. The first time I learned something was different about him was after a school party (maybe second grade?) where my parents had gone with my brother to watch me performing; my teacher asked me the next day “is there any problem with your brother?” to which I replied “no”, and thought “she must be crazy, he´s the most perfect baby on Earth”! I went home and I told my mother, still thinking “can you believe this?” and finally she explained me what his difference was. That did not add or take away any single bit of what I already thought of him, he was perfect, what was that “talk” and complicated explanation for? “Can’t you see he is just like any other baby?”. And in fact he was, despite his extra chromosome. Until he was a bit older I could not really see any delay in his development, of course I also didn´t have any other term of comparison to compare him to and so I only got to know he would learn how to walk, to talk (which he still doesn´t do like me for example) a bit later than the “normal” age. And I think it was the constant use of those comparative terms that make me realize his extra chromosome actually made him different.
I would lie if I said that I never wished he did not have Down’s syndrome, but what I got to realize years later, and looking back, is that it was through what I like to call “society encounters” that this wish grew. It was not easy sometimes, being a child myself, to explain to other children what he had and how normal he was in spite of not speaking by the age of 4; I was 10 back then. It was worse when they made fun of him. I recall this colleague in primary school (and he is presently really nice to my brother), who went running around the schoolyard shouting “Mongol, her brother is mongol” and laughing. I felt sad, I knew he was being rude, but my brother wasn’t only that and it seemed so hard to prove everyone wrong, to prove that he was sweet and cute and that it was normal for me to want him to be “normal”. I remember also secretly wishing until he was about ten that he’d speak next summer, so that people could finally see him differently, with more respect, as normal as he was for me. I think also until late I always had the idea or secret wish that if he could speak like me, people wouldn´t even notice he had Down´s Syndrome and would accept him better, not pushing him away or staring. I guess this always bothered me much more than it bothered him, he has always been a really happy person and I believe he learnt how to deal with narrow-minded people earlier than me. Even within our family, many never wanted to play with him (it was more like they were doing him a favour by letting him in) or tried to really understand him, I always felt that “pity feeling” from their side. Maybe this is not even true nowadays but that was the image I saved, my bit of anger towards others for never giving him a real chance.
At home, he was only my younger brother, I would always have to take care of him because he was younger, the only difference was that I never stopped taking care of him, even when he grew older.
Whenever I had some spare time and patience I would force him to read, sometimes not in so pedagogical a way as a teacher would, frustrated with how long these learnings would take to sink in. I could feel his frustration too, wanting to finish off the lesson and just trying to guess what was written, afraid of my rebuke in case of error. But with time, and some more patience (and I have to thank him for this skill of mine) his reading skills would improve, he would remember previously taught syllables and we would both be happy. This had to be a continuous training though, and lack of it combined with time made him a clumsy reader. I pointed at the week days, months; maths was harder but it was a matter of practicing again; colours, grammatical mistakes could be corrected during speech, and many other simple things. He's good at all that now. He knows there are different languages, countries, that he's different and that we love him. And he knows so much more, obviously. And of course, I'm not saying I've taught him everything, not at all, I was just my parents' right-hand.
He loves sports, I think we both got it from our parents, and I like to think he also got it from me. He is better than many kids of his age doing, for example, a hand stand, a cot-wheel (yes I used to be a gymnast), a front roll. He would also be great at football, basketball and many other sports had his physical education teachers spent more time tailoring classes to his special needs. But I get it, who has time for 30 different kids, plus the disabled one? I taught him gymnastics, that was my part. Now he is a professional swimmer going to national and international championships. He has trainings 5 times a week and internships in the upcoming of important tournaments. Our father drives him off everywhere, he is lucky, we are lucky for having caring and dedicated parents. He also has a great coach that really loves working with kids like him. If everyone would look at these beings the same way we do, everyone would want to work with them and learn from them. He's a happy kid, he's caring and even over-concerned with me at times, he's a good friend. He his pure, and I like to think that seeing the world through his eyes also makes me a bit more pure.
I miss him a lot I must say, miss his hugs, his joy, his grumpiness, his stubbornness, I miss my brother,(because I'm living abroad now).
His future? I don't know, do you know yours? Happy for sure, learning more through life like anyone else, making more people aware of the normality of being different, having a simple and routine job in a blessed (for having him) company.
Sometimes I would be sad just by thinking we wouldn't get to do many of the things I did when I got to a certain age, but that's life, he still has time and the most important is that he is truly happy. How many people do everything they want and still feel unhappy? How many people on Earth are smothered by social impositions or don't even have a house to sleep in? Let's face it, we just complicate, being happy is not only about what we do, what we can have, but simply appreciating what we have and can do. My brother understood that long ago, it has been sinking in slowly for me.
I know he will always have a place to eat, sleep, have fun and be loved and that's all that matters, right?
Trying to create a society of perfect human beings is a great loss and a sad mistake, simply because what makes us better is not perfection, but an unlimited capacity for love.
Joana Vaz
9 de Setembro de 2013
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