I know the experience has had a significant impact on my feelings - at times totally drained of energy and numb while at other times overjoyed and everything in between. At the moment I am just thankful that we are where we are now and not where we were three weeks ago and I appreciate all that so many people have done to help him and us through the ordeal.
This is the first time I have felt able to record my thoughts and feelings. It's been a very difficult even traumatic few weeks for me and my family as we have had to cope with the ordeal of a member of the family becoming very ill a long way from home. My wife bore the brunt of it and has stayed close by him throughout. It has been an emotional rollercoaster and we have had to cope with the situation and deal with the worst imaginable scenarios. Thankfully he is getting better although progress is very slow. The experience has taught me once again that good health and mental, physical and emotional ability are just the most important things in life and how much we take them for granted day to day until they are removed. Its revealed an aspect of my wife's character and strength I knew would be there but which can only ever going to reveal itself in such situations. It's revealed the love and concern of our family and close friends. I think the ordeal has made our family stronger. It's given me experience and insights into life in intensive care something I have never experienced before and the enormous dedication, professionalism and kindness of clinical staff. But also seeing life on the wards and experiencing the frustrations as a parent of not being able to get the care and attention you need when you need it for your child and seeing just how much you have to fight sometimes to get the attention you need. Coping with the uncertainty of not knowing what was causing my son's illness was one of the hardest of things until you realise that it's almost academic and the most important thing is to treat the illness by every means until there is a positive response. Google also played its role in provided much needed but not wanted information on the possible conditions and outcomes we were dealing with.
I know the experience has had a significant impact on my feelings - at times totally drained of energy and numb while at other times overjoyed and everything in between. At the moment I am just thankful that we are where we are now and not where we were three weeks ago and I appreciate all that so many people have done to help him and us through the ordeal.
1 Comment
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. |
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
Archive
January 2021
Categories
|