Sunday, May 30, 2010

No Manual Provided

I do not know whether to laugh or cry. We had friends over tonight for a cook out. When the food was ready I fixed Anna's plate. I did not put much on it since I knew she would not eat it. She sat there in front of the plate and I got busy doing my thing. I went over to check on her and the plate was mostly empty. I told her how proud I was of her and she said "I done" and I got her down from the table. She ran off to play with the other kids. I later picked up her plate and found all of the food packed neatly under the edges of the plate. It was positioned perfectly so that I could not see it there until I picked up the plate. I sighed. I really thought she had eaten. I don't know whether to laugh because she so cleverly hid the food or cry because I am so frustrated with her lack of eating and for my inability to fix the problem. I do not know how to express how hard it is to watch your child starve. She does not want to eat much during the day and she keeps waking up at night during her feedings and saying "ow, ow" about her tummy and trying to disconnect herself from her pump. I am so frustrated. I am not asking for a pity party, just a little understanding. Anna did not come with a manual. Everything I have had to do for her has not been done without careful thought and consideration and countless hours of research. Believe me, I would love for her not to need another procedure or another doctor or another this or that. But she does and this is our reality. You don't have to like it but I ask you to please accept it. If you can't accept it then I ask you to please respect the fact that I have no choice but to accept it and deal with what comes...


  1. I hate that. When people question the decision you make--as if we haven't considered all the options. I have days where I cry about the crappy decisions I have to make.

  2. we're struggling with feeding; it's a constant battle for us too. we're on the verge of getting the g-tube... and Louie (his dad) told me his mom told him g-tubes cause infections. ummmm, ok. I know enough about them that THEY don't cause infections, bacteria does... but even so, I guess I should just let him not get enough food? I'm really not even sure why she made that comment.

    it's not easy. but no one I know personally understands.