Wednesday, 26 October 2016

hurrah and huzzah

So...we have a respite weekend approaching. These come about once a month and by the time they arrive , we are more than ready. We have three nights without the Boy while he is being cared for at the Most Marvellous Respite Centre. The first night we wake as usual, waiting for the Boy to start banging about, alerting us to his wakefulness. On the second night we still wake up but not as often during the night. By the third night we are beginning to feel rested....then he comes home again. So while three nights is amazing and fab and help enormously, we don't actually manage to get into a proper sleep cycle a consequence both M and I are functioning on minimal s a bit of a twilight life in a way. However, we are managing .......without the Respite I can't imagine what we would do!!!! So hurrah and huzzah for the MMRC!!!

The End

Tuesday, 25 October 2016

Birthday plus 1

So...birthday plus one. I don't know about the mothers among you but on a child's birthday one's mind is often taken back to that moment of birth. JBoy came quickly. No hanging about for him. We only just had time to organise our marvellous friend to come and sit with the Others, then M rushed me to the local hospital. (I was a little offended  as he made me sit on plastic case...)(funny the things one remembers) JBoy arrived amidst the usual mount of maternal heaving and paternal encouragement. He rushed into the world, determined to make his presence felt. He has been doing that ever since. Within moments, it became clear that our Boy was not functioning as he should. We were whisked from our lovely local maternity unit which has long since closed to the soulless nearby teaching hospital with all the equipment and staff needed to ensure that our Boy survived. I have written before about the long dark days which followed as condition after condition unveiled itself and it became clearly apparent that our Boy was not going to be the usual run of the mill child, if indeed there is such a person! So today I have been able to think back to the days which followed Jboy's arrival in the world. To say they were hazy would be an understatement but we had a huge amount of support and love from friends , without whom I m not sure how we could have managed. They know who they are. They are our friends to this day, although life has meant that we don't see them as much as we once did. I love them dearly. They were more supportive than our families at that time who were coming to terms with their own ways of dealing with the conundrum that was JBoy. Our parents particularly found it hard to understand and cope. There were suggestions that we should put him in a home, give him up for adoption and other thoughts which M and I would not countenance. My dad ,though,was amazing. He just loved the Boy. Unconditionally from the moment he knew of his existence until his dying day. They 'had some fun' together. JBoy responded to my dad, recognising on some basic level that here was someone who loved him and made him safe. Our other parents never quite managed that....they did try. My dad just didn't have to try. He just loved.

But enough of this, today is birthday plus one, another day, another chance to be grateful to all the people who have been part of our lives. THANK YOU

Live long and prosper

The End

Monday, 24 October 2016

happy birthday Jboy my Boy is 28 years old. When he was born there seemed little chance that we would see his 10th birthday let alone his 28th. He is maddening, frustrating, exhausting and unpredictable but he is also loving and joyful and has a wicked sense of humour. He has given us, as a whole family, a different view on life. Some things matter less than maybe they might had we not had our boy. We are able to rejoice in little the fact that he managed to shut the car boot today all by himself. He kept going until he did it. He was determined that it should be shut and discovered how to do it. This is a small thing but for us it is huge..he made a choice, he experimented on how to do it, he persisted until he at last succeeded. What a chap!! It is his birthday but so far he has not  had any presents..he will be home shortly and then the present presenting can begin. What do you buy a 28year old who has the mind of small child??? You buy him things that you know he will enjoy but which you also know will probably last only a week or we have a toy washing machine (his favourite programme), a singing teddy and a singing Peppa pig. He also has a singing birthday card...he has presents from others too and will open those with delight and excitement. He isnt always keen on new things straight away and sometimes takes a day or two to get used to a new toy but he will look at them with unveiled suspicion, glare at them a few times, then  suddenly enjoy exploring all that they can do....alternatively, because he is so unpredictable, he may dive straight in and love everything. Who knows????  Who knew 28 years ago today the journey and direction that our lives would take? Who knew that things could be so bleak or so golden? We have known extremes of emotion with the Boy. We have sung, weeping, over him as we thought he was not going to reach the next day, we have laughed with him, we have watched him develop in his own short, we have experienced so much. Life with him is hard. Life without him would now be harder.
Happy birthday, my Boy.
The End

Friday, 7 October 2016

an autumnal moment

So..we re well into the swing of Autumn here...leaves falling, skies greying and shops filling with delightful and not quite so delightful Christmassy things. JBoy does not appear to notice the changing of the seasons...he just accepts it when we start to dress him in warmer clothes, thicker trousers and a slightly more padded jacket. I wonder if he does notice or whether he is oblivious. Routines change ever so slightly too.....lights go on earlier in the evening, the fire will soon be lit and radiators once again become logged in clothes as I try desperately to dry everything and avoid that wet dog smell that comes with slightly damp clothes which are put way before they should be. It is Jboy's birthday this month. He will be 28. I have found a nice noisy card but as yet, no present. I did order a singing teddy from Amazon but when it arrived, it failed to sing and the batteries eventually grew extremely hot and began to fizz...which isn't good. There is the temptation not to do his birthday at all as he isn't  particularly bothered by it but that feels mean and heartless....even if he has no idea what is going on. He knows about presents now and enjoys unwrapping things but that is more pertinent at Christmas when there the many presents and many people but for his birthday it's just him. Now that DG lives away and the Others have busy lives of their own, Jboy's birthday usually goes largely unmarked except by me. M isn't very hot on birthdays in general so would probably happily ignore everyone's, just isn't on his radar. So...what to do for a present........I have a couple of weeks but my mind is singularly empty of ideas, now that the singing bear is defunct.....what to do......all suggestions gratefully received.
Thank you
The End