Micro-preemie syndrome

Despite some of the great strides we're seeing from Truman, we know there is a still a very long road for him. Another mother, whose child also has severe feeding issues recently posted on her blog a call for the medical community to issue a new diagnosis of extreme preemie syndrome (or something similar) to explain to people all of the undefined, hard-to-see, pervasive, and life-altering things that preemies and their families deal with day-in-and-day-out, like feeding problems, sensory problems, motor skill issues, learning challenges, behaviorial problems, and the litany goes on and on. Her very insightful post is here: http://lizmccarthy.blogspot.com/2008/12/announcing-extreme-preemie-syndrome.html

What surprised me about her post was not the idea because I, too, have felt this way for the better part of a year. It was the reaction she got from people who felt that she was ungrateful for her "miracle" child's survival and progress. I guess it shouldn't shock me because people all the time ask me if Truman is "normal" now or assume he has "recovered" since he's over 2. When I explain to them that no, he hasn't recovered and try to explain what is going on with him, I get blank stares and platitudes about how Einstein didn't talk until he was 4, blah, blah, blah. I also often get reminders from people that I should be grateful that Truman has come as far as he has and for the miracle his survival was. And, I am. Believe me, I am grateful for every milestone Truman hits because at one point, we were told he may not hit any of them. At the same time, I get angry and frustrated with having to be grateful for what most parents get to take for granted, such as the fact that my child is alive or that he can walk. Yes, I have a miracle baby who I love more than life itself, but I would have settled for just a baby.