With the sudden influx of spare time, I’ve gone back and read some of my earlier posts. I think that he reason I was twisting about in Feb/March/April was that I was coming to terms with what lay ahead. If my son survived the pregnancy, what would I do? I knew that going ahead with the surgery and all of the other interventions would start a chain reaction—that once I started it, and once I began down that path with my boy, I’d be committed to whatever would come. There would be no going back, no pulling of any plugs. When I met with the surgeon, I asked him some grim questions about survival rates and tried to make some sober decisions about how to go ahead.
But of course once I saw my son, felt his struggle, understood his determination, and witnessed his will, all of my reservations went right out the window. I was in this for the long haul—for two or twenty or forty years. Though I felt overwhelmed by this course, and very aware of my insufficient emotional, physical, and financial resources, I knew that I would find some way. I would carry him through the first two years, and stand beside him as he grew up with various impairments and endured repeated repairs. If his limitations were physical, we’d find our way together. If they were mental and/or develpmental (as many HLHS children’s are), I’d do whatever he needed. And in any case, I envisioned the heartbreaking work of helping him come to terms with the fact that he’d likely need a heart transplant when he was about thirty. Should he go to college? Should he marry? Should he start a family? These were the burdens that I shouldered on the day of his surgery.
And now, all of those burdens are lifted. I’d be a liar if I said that I’m not a little relieved—for him and me. I mean, I wouldn’t hesitate if I could have him back, no matter the difficulties. I’d choose that in a heartbeat. But I can’t make that choice. All I have is this emptiness, this disequilibrium, this awful guilt-soaked sense of freedom. Suddenly, I have all kinds of time, and energy, and money that I didn’t. I was going to spend everything I had, and everything I could get, to give him the best life possible. Now, he’s gone, and all of my high hopes and good intentions are worthless. I’m here, and he’s not, and that is awful.