Growing up with a sibling who has Cri du Chat Syndrome

This story was kindly sent to my by Sasa who lives in Slovenia and has grown up with her sister Anja who has Cri Du Chat Syndrome.  Sasa finds it difficult to write in English, but I have not changed anything that she wrote as her words are very easy to understand.

I am 21 years old and Anja is 4 years younger. I don`t know any one else to be so kind, loving and happy like she is. She is the
only bright light in our family. She make us laughing and sticks our family together. Because of her I decided to study Special
Pedagogic. I want to know everything about children with special needs and about CDC syndrome. From the time when I was 12 years old I was asking myself how to help her to be more normal. I believed that exists someone in the world who could help her, but later I realized that that just won`t happened and that we must reconcile with it. When I was 6 - 12 years I felt ashame when we went for a walk, because everyone was staring at us and pointing a finger at her. Later I started to aware what is right and wrong. I also couldn`t laugh jokes about handicapped person, because all of that reminds me on Anja, and such kind of jokes just isn`t funny for me, but it makes me cry.

In the first was living with my sister very difficult because of my parents - especially mother who just couldn`t except a thought that she won`t  be normal like me. That`s why she had totaly consecrate on her, while I felt lack love, missed her warmth. All, what I done was wrong - she just criticized me. If Anja was crying or breaking sth. to pieces was again my fault - I felt like a sinner. Probably she noticed that I started to behave more and more aggressive to everyone and speaking vulgar. ( I just want to draw theirs attention. ) That`s why she bought me a thing that I really liked and thought that she solve the problem. But I still needed just a small piece of that what Anja had got. Parents had demanded from me incessant adaptation, to renounce my friends and party. I had to stay at home and whereever they went I had to go with. All physical and psychical burdenings, depression and care were unintentionally bearing on me and maybe they wanted me to suffer and to sympathize with them. Today I know they didn`t do that intentional and that they didn`t want anything bad for me.
When I was 18 years I found out some articles abot family and relationship between them, which I showed the parents. I wanted to indicate them, that they didn`t treat right and that is still a time to change. Actually, I wanted to save our family of the total colapse. Most of my friends thought that I`ll go out of my mind, when I will start studying in Ljubljana - thats 130 km from home, but they were wrong!

Now I am at 3rd grade at University and our relationship at home is much better, full of understanding and laughing.
Anja well knows when I am sad, when I need a hug and when to comfort me. She brings me handkerchief and wipes my tears:"
Sasa please don`t cry. Why are you crying ? Is that because of boyfriend ? Do you miss him ? " She always do the right thing.
Such a big wish to learn letters and numbers like she has I`ve never seen before. During the day and by night she writes into the
exercisebook - in most cases her name and then reads it or just takes a book, a magazine and imagines what is written ( " I love
my sister, mom, father. We went for a walk. " ...) What is more, she likes to write on a computer, she likes to pick flowers,
mushrooms, hazelnuts and playing ball - especially volleyball.

In principal I really don`t know how would I live without her, that is why I am trying to be as kind and loving to her. Sometimes I woke up in the middle of the night and I am listening with fear in my heart if she is breathing. I know that years are running down quickly and I thank God day by day that she is still with us.

Thank you Sasa for sharing your story with us.
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