It goes without saying that our lives changed when Paige was born (at 25.5 weeks for those of you who are new). Hospitals, doc visits, meds, medical terms to learn, etc. The only thing that was consistent in our lives what the inconsistency.
When Paige was 4 I joined an on line group for parents of older preemies. At the time I needed help with the public school system and the parents on the list were full of very helpful advice. One feeling that I took away from the "been there, done that" crew was a sense that they had settled into their lives. They had gotten to know the doctors well, were used to IEP's and had accepted (but not given up on) the alphabet soup (ROP, MR, DSI, SD, BPD, CP, etc) that their child was dealt. I remember being so envious at how calm many of them were and couldn't wait to get there myself.
9 years has passed since Paige was born and I still don't feel calm. Inconsistency still rules our world. Just when we think we are on the path to consistency, more letters are added to the already full bowl of alphabet soup.
I'm still waiting for the day when we can all settle in.