Dragon Parents: How do you let a child go?

I was looking through some articles tonight and I came across one called "Dragon Parents." I first read through quickly thinking it was an article about a different kind of parenting technique until I realized that's not what it was about at all. I keep reading as this women talked about how her son had Tay-Sachs disease. She explained how he most likely won't live after 3. The disease attacks the body and senses then he becomes paralyzed to eventually die. This "dragon mother" explained why she was one of these "dragon" parents. When your child has a terminally ill disease your not really all worried about the future, it doesn't pertain to your child. Right now is all that matters. Nobody asks for advice from "Dragon Parents" she explains "We’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. "   Not worrying about the normal and sometimes ridicules things that we fuss over with our  children. As  she was pregnant she planned out this little baby's future. Would read him books in her belly all the things that would have a great effect when he would be older. But after you get news that you aren't going to be watching your precious baby grow into a toddler to eventually go on to preschool and beyond what do you do. Well she started to live for now. Not worry about tomorrow it will all to soon show up.  Here's a quote from her  "Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now.  No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t."  How does this women go well the love of her little baby keeps her going like a freight train, " dragon parents"