Nearly 6 months ago I had to make a decision that no parent should ever have to face. I had to agree to the hospital turning off my daughter's life support and to let her go.
I always knew the day would come. I knew that Daisy would die before me but I just did not know when or how. As it was we had 12 years with her. In her final three years the effect of the seizures and long term total parenteral nutrition (TPN) caused brain and neurological damage. We could see a clear deterioration, a very slow but painful decline.
When Daisy was about 7 she was referred to the palliative care team, she had been under hospice care since she was 6 months, but in agreement with the hospital we understood that we needed to focus on maximising Daisy's quality of life and enjoying the time we had with her.
These foolish things remind me of you
It catches you unawares, when you least expect
it. Those little things. I'll be in a shop and see a something that I know
Daisy would like, would have liked, and remember that I'm never going shop for
her again. No more trinkets from festivals, tshirts of her latest
favourite character, no more over the top accessories or endless craft supplies.
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