Phil is home. I am baking, and I do not bake. I love getting to be in control, that he lets me (has no choice really) take care of him. I love that he needs me. It’s a strange thing to think, but I do. So much of the time, he’s the one to shoulder so much, he takes care of things, and I do, I love being able to take over, to step up, to let him rest. To take care of him. I still need him, but it’s so nice to feel like I’m needed, not just loved.
The freshmaker is working full-time, not occasionally, which means the battery of Mr. Pace will die sooner rather than later, which means going back for a replacement. I genuinely hope that’s the worst of it.
Phil still doesn’t want family around, "just sitting around waiting for Thursday’s news." I can understand that, that it brings an elephant into a room, and makes our home feel like a waiting room. "I just want to live my life," he says, "not live fearing the results of the biopsies." The doctor had explained that taking a biopsy from the heart is a bit like feeling your way through a dark room, playing Marco Polo. You grab what you can, and the results might return normal, but all that might mean, she said, "is that we didn’t grab from the right spot." So even "good news" doesn’t let you off the worry hook.
The hardest part in all of this isn’t that I’m alone. It was harder going through this with Lucas because there was a feeling of fault. I felt, as his mother, that I caused what he went through because I gave him the genetics, or I couldn’t house him longer. But, for some reason, with Lucas, I didn’t play the IF game. And that’s the hardest part of this, knowing when to talk, what to say, what not to say, and all those self-imposed, destructive, IFs. I believe, on some level, we all have to prepare for the IFs, be ready for them, without really living in fear of them, letting the IFs infiltrate on our now. "I’m going to screw up," I told Phil, "I just am. I’m going to say or do the wrong thing. I’m going to wait on you too much, or not enough. I’m going to ask you if there’s anything else I can do. I’m going to be annoying. I’m learning here, and I’m not a mind reader. So, just tell me, and I won’t be offended." I don’t know, for once, what to post, what not to post, on this blog because with everything else, he genuinely doesn’t care. Write about his penis, no problem. Write about his heart? I don’t know. The only reason I don’t know is because for the first time, I see that he’s really vulnerable. In almost a fit, he says, "I don’t want to discuss this. It’s the last discussion we’re having about my health! Everything is going to be fine. And I don’t want us living our lives around Thursday. Enough. I’m fine. I don’t want to talk about it!" I understand.
"Okay. How about this, we only discuss it when you bring it up, okay?"
"Okay."
And since then, he brings it up every two-three hours. And I can understand that, too. I hope Thursday brings us some kind of relief. In the meanwhile, I’m going back to cooking and baking. So far, I’ve made a blueberry pie, a fresh cherry upsidedown lemon poppy seed cake, and bought an espresso machine (though, now Phil is understandably scared to drink caffeine or alcohol). Tonight? Wild mushroom tart. Sparkling apple cider. And a toast to good health, even if I’m the one to say it.
***Thank you, also, so so much. I know it goes without saying, but I’m saying it anyway. I’m not really good at talking about it over the phone with people. And this blog and the connections made through it genuinely comfort me. It really does make me feel like I’m not in this alone. I’ll never, ever, forget when I was in the hospital with Lucas, and I couldn’t speak. I felt like my only connection was through this web site. And a reader left a comment, "we’re with you here all night." It was the best comment I ever received because I felt it. The fact that we’re, all of us, able to connect in such a profound way with people we might never come to know in person, can really be such a gift. So thank you for yours.
