Living with Uncertainty
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Parents on the burden of chronic caregiving (with inadequate nursing). “I am so used to my circumstances that I don’t realize the stress.”
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A prenatal diagnosis of Congenital Diaphragmatic Hernia and living into an uncertain prognosis
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There was never a thought in my mind that she would die from this. I called her the Comeback Queen. . . . Then I had to get ready for that day.”
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Sydney has totally changed the way I look at life: there’s gratitude, and also the flip side.
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“Neurologists have this bad reputation for being very vague about prognosis. Don't let uncertainty be a barrier for connecting.
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A neurologist on the emotional and practical stress of seizures in children with SNI.
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I wonder if I project my own feelings on to him.
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I had to learn to live in the moment and not look at the future.
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The unknown is the hardest part, not the day-to-day
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Focus on the Here and Now
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There is no planning. You’re just there, life on hold. (Or Everything is put on hold until his life ends.)
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Just because your child is seriously ill, doesn’t mean you stop parenting and teaching them.
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It’s hard to do but we do it.
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We didn’t let ourselves think about the After, before.
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The benefit and blessing of going day-to-day
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When I feel myself spiral downward, I have to do something else.
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You get to the point where this just Is What It Is.
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I can only think out a few years.
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We don’t know the end of the story but her story will live on forever.
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Something always comes up. You do it again and again and again.
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I’m going to keep moving forward.
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It’s a suffocating feeling.
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You have to have a sense of humor.
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