When Charlie was in the NICU, clueless people loved giving advice. One of the things that really got under my skin was when people would tell me not to spend so much time in the NICU with her. I was repeatedly told, “She does not know when you are gone.” and “You should take advantage of this and get some rest.” It was strange how people viewed it as a vacation of sorts. Like I stated, they were clueless.
When Charlie was having GI troubles, I was told by a few neonatalogists that it was a preemie thing that she would out grow. It seemed like I was supposed to be consoled by knowing that she will feel better in the future. Why was some optimistic prophecy supposed to make me feel better? What about right now?
I am concerned with my baby’s present. Right now matters! While I consider the future and strive for the best out comes, I presently want her to have a good quality of life as well. What if this is all she has? What if it is all I have? There are no guarantees in life. I’m not holding my breath and waiting for a prediction to come true. We are going to figure out how to make the best of what we have, right now… This very moment.