Breath and heartbeat. Inseparable, and synonymous with life itself. Soothing, natural, and ever so familiar, they are with us every second of every day and every night.
But there comes a time when the breathing stops and machines have to take over: the ventilator, the oxygen concentrator, the pulse oximeter. Their disturbing mechanical sound makes for a strange kind of lullaby.
This is the world of people living with CCHS. People who stop breathing as soon as they fall asleep. They spend their nights surrounded by a shrill hum, a dull knocking, the thrum of machinery pumping air in and out of their lungs. Though not pleasant to the ear, that noise is reassuring: it tells us that the equipment is doing its job of sustaining life. These sounds, at once intrusive and welcome, set the rhythm for Kołysanka dla Ondyny [A Lullaby for Ondine], sung by Ania Karwan. A series of mechanically-induced breaths, in and out, that has to go on until the curse is lifted.
I know a lot of night songs
Sweet lullabies, so quiet
But this one is a loud one
But this one we keep private…
This lullaby sounds so bizzare now
It praises din and clatter only
So good to bring us peace at night-time
This lullaby is sung to Ondine