as a mom, i am in charge. i say when my kids go to sleep. i say what time they wake up. i choose what they eat for breakfast. i decide what time we leave for school. i tell them who they can be friends with. yes… i am THAT kind of mom.

But when you have a baby who has a chronic illness and a disability that is way far beyond anything you have been “trained” for as a mom… you no longer become in charge of your child. you no longer have a say of what they eat. you no longer have a say in what happens to them, period.

i am sitting here in dialysis with my son and his lab results have come back incredibly crazy. they are so off that in any other scenario it would mean emergency intervention. but because these nurses know my son, they believe the labs results are wrong. not only that, but this nurse is brand new. so she hardly knows what she is doing. and as a mom, it is frustrating to have to sit here quietly and not have a say in what happens to my own son.

i saw how she was taking the blood sample and it wasnt the way his usual nurses take it. but who am i to say something?! i have been in this special game for two years now. if need be, i can do this myself. but im not the nurse. im just the mom.

im the one that sees when my son is not feeling well. i can tell when hes hurting and uncomfortable. i can tell when he is totally fine and oblivious to the blood and machines around him. i wrote in another post how i am the expert on my son. and i am. i appreciate when the doctors come in and ask me questions. i used to take such enjoyment when i would ask doctors questions about medications and interventions. they had no idea that i had researched everything about everything that pertains to my son. i sudden received a different kind of respect from them.  i wasnt just a mom. i was the mom that expected things. i expected the best care for my son. i expected them to talk to me as a professional. i expected the best. i expected answers. i expected good answers. i expected my opinion and my say so to be a part of any and all decisions for my son.

so as i sit here… quitely and almost invisible…. all i can do is sit back and watch. my son is in someone else’s care.