They are approaching their first birthday at the end of May. It's been a long, difficult, at times gruelling and emotionally challenging year for my daughter who has had to cope with her three children by herself much of the time. They were born 10 weeks early so developmentally they are really only nine months old. In the last few weeks Archie has learnt to sit and this has liberated him so that he can do occupy himself so much more. His development is in stark contrast to Alfie's who actively resists sitting... In the last few weeks we have become acutely aware and concerned of differences in his development compared to Archie's. We have always been conscious of the consultant's diagnosis before they left hospital that Alfie's brain scans showed signs of damage - probably because his brain was starved of oxygen at some point. Something that I think is not unusual in babies with such low birth weights. We have lived in hope that everything will be okay but we think we are now seeing the effects of this damage in his development. For the first time this week I googled to find out something about cerebral palsy. The information was both reassuring (that there is help and the condition doesn't get worse) and distressing (depending on the degree it can be quite disabling). There are a number of signs that are pointing to this condition for example one of Alfie's arms seems less active than the other, he throws himself backwards when sitting or standing and he often goes into a trance. I know my daughter and her husband are very worried as I am for them and Alfie. The physiotherapist came today and she is going to arrange for some tests for Alfie to check on epilepsy and his cognitive functioning.. I tried to reassure my daughter that the testing is for the best as the earlier any discoveries are made the quicker treatments can be put in place.. But my heart bleeds for them as parents. But she is a remarkable woman and Alfie is fortunate to have her for his mum.. She will I know do everything she can for him and I/we will try and support her and them as family as much as we can. We will not give up hope that his life will not be so limited and I will not dwell on all the potential scenarios and imaginings of of what lies ahead. Instead I will remember the wonderful smile he gives me when he hears 'Hello Alfie its granddad!' and the way he rests on my tummy when I cuddle him. What a funny mix of joy and sadness life can be.
My daughter and her children are a very significant part of my life. This week I did my Tuesday child care looking after the twins and also Wednesday afternoon while my daughter went to the dentist. I love my twin grandsons as if they were my own children.. My wife said this and I realised it when she said it. There is no doubt about it I have bonded to them and them to me in a big way.
They are approaching their first birthday at the end of May. It's been a long, difficult, at times gruelling and emotionally challenging year for my daughter who has had to cope with her three children by herself much of the time. They were born 10 weeks early so developmentally they are really only nine months old. In the last few weeks Archie has learnt to sit and this has liberated him so that he can do occupy himself so much more. His development is in stark contrast to Alfie's who actively resists sitting... In the last few weeks we have become acutely aware and concerned of differences in his development compared to Archie's. We have always been conscious of the consultant's diagnosis before they left hospital that Alfie's brain scans showed signs of damage - probably because his brain was starved of oxygen at some point. Something that I think is not unusual in babies with such low birth weights. We have lived in hope that everything will be okay but we think we are now seeing the effects of this damage in his development. For the first time this week I googled to find out something about cerebral palsy. The information was both reassuring (that there is help and the condition doesn't get worse) and distressing (depending on the degree it can be quite disabling). There are a number of signs that are pointing to this condition for example one of Alfie's arms seems less active than the other, he throws himself backwards when sitting or standing and he often goes into a trance. I know my daughter and her husband are very worried as I am for them and Alfie. The physiotherapist came today and she is going to arrange for some tests for Alfie to check on epilepsy and his cognitive functioning.. I tried to reassure my daughter that the testing is for the best as the earlier any discoveries are made the quicker treatments can be put in place.. But my heart bleeds for them as parents. But she is a remarkable woman and Alfie is fortunate to have her for his mum.. She will I know do everything she can for him and I/we will try and support her and them as family as much as we can. We will not give up hope that his life will not be so limited and I will not dwell on all the potential scenarios and imaginings of of what lies ahead. Instead I will remember the wonderful smile he gives me when he hears 'Hello Alfie its granddad!' and the way he rests on my tummy when I cuddle him. What a funny mix of joy and sadness life can be.
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I often say that we are who we are because of all the experiences we have had and the meanings we have chosen to create for ourselves through those experiences. Today is a special day for me and my children. Its thirteen years since my wife Jill died of cancer at the age of 48. It's also true that you never stop grieving for and missing the person you have chosen to spend the rest of your life with. They remain an integral part of who you are for the rest of your life. Indeed, one of the reasons I have tried to live a positive and fulfilled life since she died was to try to honour her. Had she lived she would have seen our three children grow up to become fine young people, she would have enjoyed two of them getting married and the third talking of marriage and enjoyed our grandson and the thought of twins on the way. She had that rare gift of being able to get so much enjoyment from the smallest incidents of life - like a cup of coffee and a chocolate biscuit. She taught me to see the joy in the simplest of moments. Whereas I complicate life she simplified it to the essentials and enjoyed it for the sensual experience it is. She helped me see that it is the simplest of things in life that are worth living for.Generally I am able to be positive abouit most things and people often comment on my enthusiasm, energy and positivity but there is nothing positive about losing the one you loved. Sometimes I feel sorry for myself and my loss, at other times I experience intense feelings of guilt that I am alive and she is not. I tell myself that she would have wanted me to try to live my life to the full and I know she would think I had done the right thing to marry again and try to be a good step father to my three children. But I am not religious so I have no concept of her awareness being in another place and that makes me very sad sometimes. I have to comfort myself with the thought that her spirit lives on in mine and of our children. Perhaps all I am doing is really a tribute to her. My wife knows how I feel because she feels the same about her husband who she lost when he was only 35. We are united by a shared experience that has profoundly shaped us both. These two pieces of music to express how I am feeling - when I am feeling melancholy I love to listen to the Chinese erhu. Jill never saw the film crounching tiger but here is some of the music from the film that really touches me. The second is Jill's favourite ever song - fields of gold by sting. The first makes me feel unbelievably sad the second reminds me of our happiness. |
PurposeTo develop my understandings of how I learn and develop through all parts of my life by recording and reflecting on my own life as it happens. I have a rough plan but most of what I do emerges from the circumstances of my life
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