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.”
A prenatal diagnosis of Congenital Diaphragmatic Hernia and living into an uncertain prognosis
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.”
Sydney has totally changed the way I look at life: there’s gratitude, and also the flip side.
“Neurologists have this bad reputation for being very vague about prognosis. Don't let uncertainty be a barrier for connecting.
A neurologist on the emotional and practical stress of seizures in children with SNI.
I wonder if I project my own feelings on to him.
I had to learn to live in the moment and not look at the future.
The unknown is the hardest part, not the day-to-day
Focus on the Here and Now
There is no planning. You’re just there, life on hold. (Or Everything is put on hold until his life ends.)
Just because your child is seriously ill, doesn’t mean you stop parenting and teaching them.
It’s hard to do but we do it.
We didn’t let ourselves think about the After, before.
The benefit and blessing of going day-to-day
When I feel myself spiral downward, I have to do something else.
You get to the point where this just Is What It Is.
I can only think out a few years.
We don’t know the end of the story but her story will live on forever.
Something always comes up. You do it again and again and again.
I’m going to keep moving forward.
It’s a suffocating feeling.
You have to have a sense of humor.
