The decision hits you like a sledgehammer, it’s the toughest phone call you’ve ever had to make. You spent months looking for an alternative, double checking, trying to consult with the best, switching position numerous times based on new information. While others watched Netflix, you were her silent counsel, fighting through the night, researching, checking….there was no room for error. As she played, giggled and danced you tried to bury the sadness of what was to come. What you couldn’t prevent, what you not only couldn’t stop but had to condone.
The hardest words you’ve ever had to say stumble out of your mouth…..
Sounds simple, easy, It isn’t. It feels like everything inside you is ripped out. You feel physically sick.
It isn’t your life, it’s P’s. This decision shouldn’t be yours, yet you are expected to make it. These two simple words make you uncontrollably shake, the emotion pent up inside to keep things together, keep it professional, matter of fact, shatter. You’ve never been so close to the line. How can I ‘ok’ someone to cut my daughters chest open and stop her heart…If something goes wrong she’ll have to live with the consequences, or worse, and you’ll have to pretend you made the right decision for the rest of your life.
The nightmares begin. You can’t sleep, the image of her lying there haunts your dreams. You think you know what’s to come, you’ve seen it before, but this time will be even worse. Her tiny body lying lifeless with tubes coming out of her, that huge scar down her chest. The image will never leave you…
The phone rings, everything around you seems to stop, you can’t breath…..’We’re not ready’, ‘it’s too quick’…..
‘Who is it?’ P asks….How do you tell her..?!
On Tuesday, P will be admitted for open heart surgery. The surgeons will try and fix the ASDs (holes), cut and patch her pulmonary artery and check and try and repair her pulmonary valve. We will be by her side, holding her hand….hoping.
Whatever happens, P’s life will never be the same again.