It's meant to be one of the best days of your life. It's meant to be full of joy and amazement. It's meant to be filled with well wishes and time stopping moments as you just marvel at how incredible your tiny baby is. It wasn't like that for us. Not at the start. We had one carefree hour with The Lodger before everything turned horribly wrong and we were left feeling empty and confused, angry, guilty and sad. Terribly sad. The second time I met The Lodger he was hooked up to wires, in a room with twenty incubators with tiny little babies all fighting their own battles. Beep.... beep... beep... beep beep beep. It didn't take us long to understand tubing, wires, machine sounds, hospital routines and hushed conversations. The frustration of trying to change a nappy with wires attached to his feet and chest. The feeling of inadequacy as you try to feed him 10mls of his bottle that he just won't take, as you manipulate his jaw to suck and wish you had...
Our life with our son The Lodger, who just happens to have Prader-Willi Syndrome