Last week, one of Connor's classmates lost the battle. It's the first time we lost someone in Connor's circle, and it's a gut punch. They were classmates last year, and they were as close as kids like them can be. My heart is broken for her family. I can't even find the words to write in a condolence card to them. My heart is aching for my son, who may or may not know what has happened. And it's all in the background, because we don't want to make a huge fuss over it to Drew and Tucker. While they are aware that Connor is different and will always be, and will always need care from another, we don't want to introduce that his lifetime with us may be shorter than most. It's a subject we practically can't discuss ourselves as his parents. But that's the fact, in the plain light of day. Connor was expected not to live past 2 years, really. And now he's 9. We are on borrowed time with him. When you have children, there are a lot of new worries that pop into your life. With Connor, the worry that lies just beneath the surface is "When will he pass away? Will his brothers be old enough to understand? Frankly, will I be old enough to understand? Can I be as strong as I will need to be for our lives to somehow continue?" Along those lines.
I think it's starting to bleed through in my parenting of my other boys. Drew has already asked us why we love Connor more than we love him and Tucker. He was mad at us, and he knew that question would upset us. Well played, sir. But he already knows that if Connor needs something, we make it happen then and that he and Tucker have to wait until we are ready, and that there are things we cannot do because of his older brother. Like go as a family to an amusement park. Or almost anywhere are a family.
I am wretched with the boys sometimes, because things have to get done and sometimes it's only me (and some nights, it's only Lee) who is there to care for them. It's no fun for anyone. I have drained the life out of my son's lives. How do I get it back?? I don't want to be wretched. I don't want to tell people everything is good when it isn't (though I will continue to do so because that's what's socially acceptable for the time being). What I want is for us to find happiness in the every day again. It's all well and good to have a vacation now and then, but the day to day is what needs to be better.