"Normal? What would anyone in this family know about normal? The only normal one is Jack-Jack, and he's not even toilet-trained!" --Violet, in The Incredibles
I've done a lot of reading over the years in "survivor" literature, or just from chronic illnesses in general. I suppose I'm just drawn to it. Here are a coupel of things I've noticed:
1) The whole idea of "surviving" is totally foreign to me. It's sounds awfully....well, grim. I mean, with CF, you don't "survive." It's fatal. You don't outgrow it, it doesn't go away. You have it as long as you live. I was reading an article about a man with CF who was the father of triplets and they kept talking about "surviving" or "outgrowing" CF. Um, that doesn't happen. So you don't "survive." To me, that connotates just getting through a day, and not enjoying life at all, not really living. So many people seem to just put their lives on hold while they go through cancer or whatever. But what if you have it all the time? What if it never goes away? You either learn to live in spite or it or you waste your whole life.
2) Normal is completely, totally relative. My life, to me, has always been "normal." It is perfectly normal for me, even now, to wake up in the middle of the night with a pain and wonder what it, if it's going to get worse, and if we have to go to the ER. That's normal. Runs to the ER Sunday morning? Totally normal. Vacations at Children's? Same thing. Blood draws every month, IV antibiotics, syringes and alcohol prep pads on the kitchen table, where there should be food and homework and napkins? Also normal. That's what I knew. I mean, that's life.
I guess it's harder when you've known what the world considers "normal" and then have to be plunged into something "abnormal." But once you're there, the best thing-- the easiest thing-- is to realize that normal is relative, and this , whatever it is, is the new normal. Can it suck? Yeah. It can. But it sucks more, I think, to put your life on hold and wait for things to get better. With CF, they never get 'better', they just get more or less 'good or bad'. So you sort of learn to roll with the punches.
3)Wanting things to be normal is OK--and totally understandable, I guess-- but you can't wait for it. You can't be pining for normal. You've got to just go with it. Life is never 'normal', it's always changing and doing things you can't expect. In fact, I've come to the conlcusion that normal doesn't really exist. Everyone's life is some shade of crazy. As they say in The Family Man , "You get on it and you ride it till it's over." So, either with CF or transplant, that's what I've done. And you know, I think my life is a lot more interesting having not been 'normal.' But more on that later. :)