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Still here. Somehow.
Jul. 13th, 2009 11:43 amC & I spent the weekend at Katrins, in Germany, which was a good thing to do; it gave us company, and things to do, and distraction, and food that we didn’t have to plan or cook and (in my case) drink some beer in a relatively controlled environment (ie, a place wherein I can relax with a few drinks in the knowledge that C has support from other people). For the best part of an evening, we managed to partially forget the anguish, and have a relatively normal time of it all, listening to the evening, with cats hunting in the undergrowth and the logs burning gently on the fire.
It came back, in force, on Sunday and this morning is set firmly in hell – but we’re still here. Still working. Still breathing. Heck, I’m dressed and talking and even made it into work & explained what the situation is. I feel horribly guilty leaving C at home, but we need to try and keep some form of normality in our lives. Its my intention to get up in the morning and come into work – but to go home and work from home in the afternoon. This should give me stuff to do, a structure to the day and human contact, but also allow me to escape back home in the afternoon. I hope that it’s the right thing to do. Its rational, but it feels cold.
C & I have now had the discussions about what to do and have finally admitted to ourselves, if not accepted, that we’re probably looking at the bleaker of the likely outcomes – but we are still planning for the future. Even if the worst comes to the worst, and this goes totally and horribly wrong, it will not crush us. We will survive and we will try to make the best of it. Somehow.
If anything, planning on only surviving contracts your life, making it colder and rougher and harder. We had managed to adapt to the whole ‘our daughter needs open heart surgery within a day of being born’ because there were fairly good odds that she would have a moderately good quality of life. Sat here, now in the ‘our daughter needs open heart surgery, to correct 4 major problems, within seconds of being born, with none of the imagery or tests available due to the time pressures’, we look back on those days with some irony. How strange it feels to hope that Caitlin ‘only’ has HLHS, and how 3 sets of major operations would be a ‘good’ thing.
But we are surviving. Which is good.
S
It came back, in force, on Sunday and this morning is set firmly in hell – but we’re still here. Still working. Still breathing. Heck, I’m dressed and talking and even made it into work & explained what the situation is. I feel horribly guilty leaving C at home, but we need to try and keep some form of normality in our lives. Its my intention to get up in the morning and come into work – but to go home and work from home in the afternoon. This should give me stuff to do, a structure to the day and human contact, but also allow me to escape back home in the afternoon. I hope that it’s the right thing to do. Its rational, but it feels cold.
C & I have now had the discussions about what to do and have finally admitted to ourselves, if not accepted, that we’re probably looking at the bleaker of the likely outcomes – but we are still planning for the future. Even if the worst comes to the worst, and this goes totally and horribly wrong, it will not crush us. We will survive and we will try to make the best of it. Somehow.
If anything, planning on only surviving contracts your life, making it colder and rougher and harder. We had managed to adapt to the whole ‘our daughter needs open heart surgery within a day of being born’ because there were fairly good odds that she would have a moderately good quality of life. Sat here, now in the ‘our daughter needs open heart surgery, to correct 4 major problems, within seconds of being born, with none of the imagery or tests available due to the time pressures’, we look back on those days with some irony. How strange it feels to hope that Caitlin ‘only’ has HLHS, and how 3 sets of major operations would be a ‘good’ thing.
But we are surviving. Which is good.
S