If Sofia didn’t have one extra chromosome, she would, as her peers, attend first class today. I would buy her a new school bag, new slippers and perhaps even a new dress. Her sister would be so proud and would take her to her classroom by herself. Her brother probably would not exist. But Sofia has her 13th chromosome tripled and is, to say at least, a handicapped child. Today she went to preschool, which is actually a Day Centre Dornava.
She carefully shared her first baby pictures only with close family members and she was afraid of the moment when people are going to start asking where is she hiding her newborn and why has she stopped going for walks with her stroller. She showed the world her first moments with her stubborn little girl some time later. There was no shame in her eyes, no escaping reality. Just some sadness in her voice when she trembled for life and waited for death at the same time.
She never talked about the transition from breastfeeding to solid food, because she pumped it and gave it to her in a bottle. She never apologized for the fact that the child did not walk when she turned one. She hasn’t shared any videos with other mums, where child’s first steps can be seen. She hasn’t organized her first birthday party that would be detailed to perfection and, of course, shared to social networking sites. Actually, she was a bit confused, that her little girl was still among them and at the same time extremely proud that she was able to blow this little fire together with her father and sister.
She wasn’t bothered with enrolling her in English courses for babies, dance lessons, gymnastic lessons and she couldn’t care about professional sport ambitions which is usually what parents wish for children, not children themselves. If I look back, I could have made more of an effort when it came to her clothes, I could have bought her something nice, so she could really shine. Her only concern was that her child has (as much as this is even possible) a nice haircut and that she vomits as little as possible. Even today I dress her in her brother’s blue T-shirt. She obviously doesn’t care for children’s fashion, not even when it comes to her two other children. She only runs after them when it’s time to cut their nails or get a haircut. She doesn’t like long hair on men, especially if they decided themselves for a short haircut. She even bothers her husband with it, when he intentionally avoids to visit his hairdresser.
Even today, she holds back at school performances of the other two children. She doesn’t take photos, she doesn’t record and she is not trying to squeeze to the first row to create an unnecessary anxiety, which only stifles child’s performance. She is perfectly satisfied if her child’s eyes meet her only once and find a proud smile on her knowing they want to be their best only because of themselves, not for anyone else.
She hasn’t saved her drawings and searched for the new Georgie O’Keefe in her art. In her last year of preschool, she hasn’t taught her how to write or read so she could show off in front of her friends when they go for a coffee. Finding the top quality kindergarten was not on her list, not even when her two other children were considered. Actually, she showed her, she is not the centre of the Universe, let alone the centre of her family. One year and five months later she had another child she loved so much that the previous born could easily feel jealous. Right before entering school, she didn’t visit headmistress and begged her for a particular teacher, she didn’t care about potential classmates parents’ success and she didn’t look down on those who weren’t perfect.
She even accepts her sister’s bad mark due to multiplication table and lets her know that the desire for knowledge has to come from the child itself and that she does not attend school so she could make her parents happy and buy their love.
Sofia will never attend school, she won’t learn how to calculate and wait for her mother to love her because of her school marks. Sofia went today to a day centre for children with special needs. There she will roll in her pool, she will play with her beloved slippers and she will simply be a happy child – a happy person, even though she will never cross school doors.
Author: Petra Greiner, a mother of three, a wife, a physiotherapist. Due to her special daughter Sofia she founded Zavod 13, which raises awareness about being different and provides support not only for mothers of special children, but the whole family. You may find her on Twitter @PetraGreiner.
Article in Slovene available HERE.