Because we woke up every day for months thinking "is this the day my child dies?"
Having thought about this thing that makes us different than parents of healthy children, for way too many nights, I have concluded that it is the constant fear of impending death that caused something in us to change. Normal worry about a child's illness or injury doesn't seem to do this to you. A brief hospital stay might create an acute case of angst in a parent, but it is not the same as a chronic angst that a prolonged and uncertain NICU course can cause. Sure these parents are panicked and upset over the immediate problem, but they don't have this bone weary look we all seem to have.
I, and the other parents on this cruise ship called prematurity, have heard every platitude on the books. You know them and I know them. Heck, I've even said them to people in my pre-Eliza days: "you're not given more than you can handle," "things happen for a reason," "time heals everything," to name a few. To me, these things just caused me to roll my eyes and offered no comfort for the hand that Eliza had been dealt, because maybe she had been given more than she could bear and I could see no justifiable "reason" for any of this happening to her.
There is a chip we seem to wear but one we really wish we had never carried. I think it makes us jaded to the point where we almost lose compassion for other people and their children's seemingly routine ailments and quirks: Your kid had an ear infection for a few days? Big deal, my kid spent a month trying not to die from sepsis. Your kid doesn't like pasta. Big deal, my kid lives on some vile liquid called complete medical nutrition. I can't deny thinking these things but I don't very much like myself when I do have these thoughts. At what point though do we stop focusing on the fact that we are raising micorpreemies and simply focus on the fact that we are raising "children." Not that we should diminish our children's struggles or give up on trying to find answers to the long term effects of their extreme prematurity, but at what point can we put that aside and just enjoy our children, just like those other parents do? I suppose that point is different for every parent, but I think I am, thankfully, reaching that point.
I want Eliza to define her life by the things she can do instead of the things she cannot do. I want her to remember that she enjoyed a vacation because she was in a beautiful new place and not whether she was able to eat the local food on that vacation. I want Eliza to remember her life for the words she could say instead of the things she could not say. I want Eliza to remember her experiences by the sensations she enjoyed instead of by the things she had to avoid.
I think the best way for me to help Eliza enjoy her life is for me to accept that I have been deeply changed by this experience and that Eliza is different than her typical peers. Once I can do that, I can let myself enjoy the things Eliza can do and will do and not to fixate on the things Eliza may not be able to do.
That almost sounds like a New Year's resolution, now doesn't it?
And no post would be complete without a few snapshots of Miss Eliza: