VACTERL occasionally gives you a little break. Though you may have an onerous lists of tasks required to keep your child happy and healthy, you get into an offbeat rhythm that mimics normal life. You find a place of serenity and you think that you have beaten back the deadly predators.
But really you are kidding yourself. The minute you think you have it whipped, it knocks the shit out of you and leaves you breathless. VACTERL is an evil minion of death that is desperate to get its talons into you and your child. If it does not kill, it ravages both parent and child alike.
But you keep plodding on. Because that is what you have to do. You have to force yourself out of bed every day and go through the life-giving rituals that allow your child to continue. There is no quitting. There is no time for quiet contemplation. There is just the continuing dance in the quicksand. You flail about to keep your heads above the sand.
Peace will never come, just an end. Whose end is unclear.