Looking Back: Positivity in Spite of Disability
Updated: Apr 18, 2020
I know it’s a bit typical at this time of year to see a review of the year, but it can be a very helpful thing as looking back is the best way to see how far you’ve come.
Here’s a little review and 3 thankful things:
Last Christmas we escaped hospital on Dec 24th the year before was 23rd and the year before Lydia was critically ill in PICU.
This year, as I type, we have had our first run up to Christmas avoiding the hospital (hopefully it continues).
January we were in our closest hospice with Lydia for a stay as she was well, and we enjoyed a supported stay for a few days
February was pretty quiet.
March took us back to Bristol hospital (about 2 hours drive from home) and we were there into April
A few months of heavy snow in Bristol
This time Lydia had a really bad bug but Bristol children’s hospital were excellent with her, however Lydia had to be shipped back to our local hospital before she was ready for no reason other than political hospital finances.
Eventually she came home at the beginning of May.
We were back in the hospital on May 20th as Lydia aspirated onto her lungs (filled with milk feed) and another stay in hospital began.
Although hospital is rubbish you get to know the people you see frequently, and Lydia had a friend called Alfie (John) who was staying in the hospitals about the same time, so we were able to spend time with him and his parents – friends in similar situations just make these things easier.
In what proved to be a really dark and difficult period Lydia’s little friend Alfie sadly died – this tough little rock star shocked all who knew him as he was so full of life – what can you do or say?
Nothing, you can only cry.
The bleak winter seemed to be extended for us this year but in August the sun began to spring a little bit.
We got a new chair fitted for Lydia and we managed to take her and her sister to West Wales for a week where she got her cool new cap as pictured.
Since then we’ve thankfully avoided emergency hospital admissions as Lydia benefited from some of the changes to her care and help and now, we’re enjoying our first full Christmas build-up for Lydia.
Three things to be thankful for:
The good treatment Lydia got at a difficult time and effective ongoing care
Having the joy of getting to know Alfie and his family
A calm second part of the year and a clean run up to Christmas
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