The Beginning
“I internalized that to be competent meant not to cry; You do what you think is needed to get good care for your child.”
Sandy, mother of Jack and Ben. Jack was diagnosed with the rare blood disease Kohlmeier-Degos and spent most of his life in the ICU. The experience was traumatic. Here Sandy shares that not letting herself cry may ultimately not have been helpful for her. “These are imponderables.”
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The diagnostic odyssey to Tay-Sachs
Marfan Syndrome: He had 26 doctors and specialists and therapists. It was a free-for-all.
Andy, a diagnosis at birth. “I immediately asked, “what is wrong with my son?”
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.
Cardiomyopathy: A mom on arriving on the cardiac floor and finding community.
Undiagnosed: “28 years and we still don’t know exactly”
Tay-Sachs, Twin fathers and their diagnostic journey with their two children