I have had an interaction with a fellow heart mom that has really left me bewildered. We met on an unrelated email group where she happened to mention that her daughter had a heart condition. She said that she was worried about her daughter being over a year old and not walking yet but that her pediatrician kept telling her that this was no big deal.
I of course asked her about her daughter's heart condition because I am always excited to connect with another heart mom. She replied that she was not too sure what the diagnosis meant and that it was some big old word that she did not understand or even remember. That totally blew me away big time. I was overwhelmed by my son's diagnosis but when I got a word for it I made sure to get a good explanation from his doctors. I also did my own independent research on the web and through books. I could not stand knowing. Here is this mother that was willfully choosing not to understand her daughter's diagnosis. O gave her links so some very good websites and did I even receive an acknowledgment? Nope!!
I know that this problem is deeper than just this one mother because I get comments all the time from the specialists that have taken part in Evan's care about how knowledgeable I am and how glad they are that I am so involved in his care. To me it is only natural that I do these things for him. He is my son. I can't wrap my mind around the fact that some parents won't life a finger to be more involved in the care of their child. I don't like that I have to prick my son's big toe twice a month to run a blood test on him at home. He doesn't like it either but it is much faster to do it myself than to have to go somewhere else so that someone else can be the bad guy. I didn't like that I had to put a tube down the back of his throat through his nose so that he could get the nutrition that he needed but I did it. I don't like having to give him shots twice a day in preparation for his upcoming heart catheterization but I do it because he needs it.
Talking to my sister who is a pediactric nurse in an oncology unit has only deepened my disgust with some parents. She has told me stories of parents that don't keep the central lines used for chemotherapy clean when the kids are at home, allowing them to become dangerously infected. There are other parents that treat the hospital as a daycare, leaving the poor kids alone the entire time they are admitted.
Sometimes I wonder what people are thinking when they bring a child into this world. I know that before I got pregnant I thought through the consequences of my actions. I was fully committed to doing whatever it took to nurture the child that I was bringing into this world. I really wish that there was some way to license the ability to have kids so that parents that are truly awful would not have the ability to abuse the innocent children that they were bringing into the world.
That is my rant for the day. Now for a cute picture of Evan at the park.