The Beginning
From diagnosis to death: “It was 8 months of an incredible psychological terrain.”
Sandy, mother of Jack and Ben. Jack was diagnosed with the rare blood disease Kohlmeier-Degos and died 15 years ago at the age of 5 – only 9 months after his diagnosis, most of which was spent in the ICU. The experience was traumatic.
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From diagnosis to death: “It was 8 months of an incredible psychological terrain.”
I convinced myself my job was to be competent. I was ‘at the table’ and it was a lot of pressure. It took a toll.
“I internalized that to be competent meant not to cry; You do what you think is needed to get good care for your child.”
Cardiomyopathy: My welcome to motherhood – dreams and hopes shattered.
