Some news from The Little Family

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It has been a long time since I posted my last words on all my blogs. I think the middle of July is the last date for “Sketches and Vignettes from la Dordogne”, when I talked about a play at the Avignon theatre festival. And it was even sooner than this for “Lights and Shades”.

I have not left off blogging. I simply had no time. I have not much time left for blogging, writing, reading, or for myself.

Elder Girl has turned 57 on the 21st of July. I know that when she was born, and later still, she was not expected to live so long. Now, people suffering from Down Syndrome have a life expectancy of an average of 60 years. When she was born, it was at best 30 years. Therefore she has surprised everybody by outliving the supposed limit of her life. Congratulations must be addressed to her parents who took care of her when she was a baby, a child and a young lady. She had breathing difficulties that were remedied to. She overcame all childish illnesses. She was made, and kept, fit. She was attended to. She was taught to drink, eat, stand upright, walk, move, read, write, count. She was given friends. She was given social relationships. She was taught a job, helping to take care of little children in a kindergarten. She has had a full life – as much as her family was able to give her and as much as she could take in.

The counterpart was all the sacrifices that were made for her. Her patents gave most of their lives to her and for her and her well-being. They both died of cancer but mostly of exhaustion from having supported her as they did. Collateral consequences were then for those who have had to support her until now.

But she has been a grand lady.

Shortly after her birthday, I was awoken by a thud on the floor of her bedroom. It had already happened that she slid from an unperfectly made bed while having a nightmare. So, I was not that surprised. However, I was not prepared for what was waiting for me. She was lying on the floor, convulsing, thrashing legs and arms, eyes rolling, scum around the mouth and tongue protruding. I briefly thought of Mother dying in my arms almost the same way, and remembered as a reflex more than as a real thought what was advised for epilepsy crises. I cannot remember how long it lasted. It seemed hours but it was certainly more a matter of minutes. Then, I put her back to bed, and rang up the doctor. 

To be qualified as epilepsy, there should be other crises. There have been none. But some days, there are small electric jolts that last a fraction of second. After each she does not remember what she was saying and doing. There have been fainting fits – one of which was vicious as she banged her head on the corner of a shelf and cut her scalp. She now forgets things: she forgets the time, she forgets what she reads, she forgets to read, she forgets the days, she forgets words. She plays endlessly with her blue pencils – blue only – and never goes anywhere without less than three or four of them in her hand. She lives according a sequence of events whatever the hour. Therefore she woke up one day at two pm, took half an hour to be ready to get up, then had breakfast, wished she had her time for hugging, took her shower, got prepared and clothed, was ready by five o’clock, did not want to listen to her radio programme as in her mind it was not the proper time, but was infinitely surprised that we had no lunch and were closing the shutters when night came. She did not understand it was dinner time, TV time and bed time. She thought she was somewhat cheated of her day.

She forgets where she is and asks to come home, hears her mother, arrived one day saying “Mother is back”, took me once for her mother’s sister (one of her aunts), does not remember where things are in the house, gets glassy eyes, falls asleep in front of TV, sleeps a lot, cannot go up some stair steps. And I might go on and on.

Getting an appointment for a cerebral scanner test and an appointment on the same day with a neurologist at the nearest hospital in Périgueux is a “tour de force”. Considering that she is not a productive person but one suffering from a mental handicap, receiving a State allowance, and being 57, our Western Liberal society is not very much interested in her. She does not produce anything and she does not consume much. What is the point of keeping her living? So tests and appointments are forever pushed back in time. There are more “important” people to see to before her.

Life at home revolves around her now and we live at her own pace. Not much time to read. No time to write or blog.

Anyway, I would be glad if you ever had experiences like mine of any advice you could give and share. Many thanks for your support and help.

gossamer-threads

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11 thoughts on “Some news from The Little Family

  1. Wow – it sounds like you have had a busy times, Camille, and when real life is like this you can’t be expected to blog. Your Little Family is lucky to have such a caring person to look after them, and chin up, as we say over here – you are doing your best for them and no-one could do more.

    Liked by 1 person

    1. I am not patient, Lucy. I am sure there would be much better caregivers than me. I only do what I am able to do and sometimes wish I were somewhere else. I am selfish. But then, there is a smile or a look, or a little hand, and I feel like a brute and a bad ‘un. Therefore I try to be better…

      Liked by 1 person

    1. Thank you, Hammad. I have missed you and your family but I was busy adapting myself and all of us to this new situation at home, and I had no time left to blog or read blogs (and books). Has Uzair gone back to school? How is Jia?
      I shall try to be more organized and find some time to read and write regularly. But I would be very happy to have news from you and your family. My email is still camilledefleurville1@gmail.com

      Liked by 1 person

      1. Both Jia and Uzair are fine and doing great. Yes, Uzair is back to school now and these days, he is learning to write numbers, both at school and at home. He point out different colors in everything he see now. He enjoys different activities in school very much but once he is back home, he just want to play and keep saying no to studying at home. I guess this is how every child starts to learn, testing the nerves and temperament of their parents. Some learning for parents also in this.
        I’m sure you will reconnect with reading and writing soon.
        Here are few new snaps of kids:
        Prisma Tuesday – Oct 4th – http://wp.me/p5Ne84-3P7

        Liked by 1 person

    1. Thank you for your understanding. I am often overwhelmed and I am often angry with the situation. I am “not good enough” because I lack patience and I wonder why I have to live this when I would have been better at studies and a career. In the meantime, I feel deeply scared by the end of the situation. I really hope that we shall stay together as long as possible, and that the end will not come soon at all. The longer the better. See: I am a world of contradictions!

      Liked by 1 person

  2. I thought that you had been so quiet, and I am sorry that life has been so demanding for you. I couldn’t doubt at all that you are doing the best for your family, but you can only support them if you take care of yourself, both your body and your soul.

    I have been meaning to tell you for a long time that I had a brother with Down’s Syndrome. We lost him when he was only thirty, because he had other complications. One of those was epilepsy. I don’t know if there is a link – this is the first time I’ve come across the two conditions together before – but I can tell you that many of his episodes were very small. It could have been a bad cramp that he was responding instinctively, had we not known better.

    I still find this difficult to write about, but if there is anything you would like to ask please do. I can’t look after my brother, as I thought I would have to when my parents got older, and so it would be lovely if I could do anything for your little family in his place.

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