Chip Chick
“I understand it must be very hard for my daughter, but it’s also hard to say goodbye to her when she’s still here and can still be able to breathe, eat, and walk with little assistance,” he said.
His family and his wife’s family really are divided on what they should do here.
Here’s what the internet had to say.
“This is an unbelievably difficult thing you’re dealing with and some yelling is probably unavoidable. Grief often manifests as anger.”
“You’re not wrong for wanting to hang on to your daughter as she is for as long as possible… but your wife isn’t wrong for wanting to make her inevitable end easier, when it draws close.”
“It’s better to make these decisions, consider doctors who will help, get a lawyer if you need it, etc., now when things aren’t urgent.”
“Waiting until the situation is much worse may result in unnecessary suffering for your daughter and stress for you and your wife.”
“Apologize to her. She’s grieving too. But also remember that this is not about your readiness to say goodbye; it’s about your daughter’s quality of life and comfort. So help your wife prepare. It’ll be good for all of you.”
“Sounds like you guys need to see a therapist to talk this out with. All of it. Someone who specializes in this kind of situation.”
“Children with Sanfilippo Syndrome do not suffer their whole life.”
