To hear that your child has Ondine’s curse is crushing blow. The fear and pressure are overwhelming. From that moment on, parents have to live with a devastating responsibility. Their newborn baby’s life doesn’t just depend on machines, it requires constant vigilance on their part. Parents of Ondine’s children have to watch over them all through the night – they have to become guardians of their children’s breath. They need to develop a special kind of vigilance, as even the slightest mistake or neglect will have grave consequences. The strength needed to cope with this fear and stultifying weariness can only be found through closeness and love.
Ania Karwan, accompanied by Michał Salomon on piano, sings:
Just stay close, always stay so close
Even if tears of yours
Mean the pain of all of your sleepless dreams
Those unwhispered words