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Usher syndrome blog12/10/2023 In fact her grip was so tight it hurt and she stumbled a few times. We walked home and Nicole clung on for dear life. By the time closing time came it was dark. As it was summer we left in bright sunshine and everything was easy. She came to stay over and we went to the pub for the evening. I guess I realised the true extent of her illness till we had been going out a fortnight. I quickly fell in love with this beautiful lady and it wasn’t long before we started dating. She was very open about her condition although at this point we didn’t call it Usher’s but RP. The next day I telephoned her and arranged a date. To look at her you would never know she has Usher’s and if her colleague (a mutual friend) hadn’t said I wouldn’t know of her disability. There I saw a beautiful lady in a flowery sundress that captured my heart immediately. I was being a Good Samaritan and helping a teacher find the area office. It all started one beautiful August afternoon ( at 2 pm to be precise). It may take a while so sit down and make yourself comfortable. I think to understand my life you need to know the full story. These people fight each day to survive for themselves and their partner. These people feel the pain of the sufferer but also feel their own pain. These people share the hardships of life not through having to because of hereditary but through love and caring. There is one group however that very few people mention or consider and that is the partner of an Usher sufferer. It is the children who have to realise that their Mum or Dad are “different” and can’t see them grow up or hear their words. All too often this is the frightened parents coping with the prospect of watching the child they love struggling to cope with a world that doesn’t really know or understand their illness. As anyone who suffers with Ushers will know it is a trying disease which has a profound effect on not only the sufferer but those around them.
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