I get so sick of answering questions. How are you? How is William doing? Is he eating? I am so tired of telling the same thing over and over again. I know people are just trying to keep up on how we are doing and be supportive, but it is exhausting. I just don’t know what to say anymore. He ate half of his normal day worth of formula yesterday, what do I say? I don’t know why this is happening and so far the doctors don’t know either. I want to say call someone else and ask them. I just want to crawl in a hole and wait for this to be over, if only it were that simple.
The other thing that is hard (again I know that people are well intentioned, but…) is when they say, “well, at least you know what to do this time.” Or “look how great Jack is now, it will all work out.” I know they mean well, but it doesn’t help. I just makes me think we have been through all this once before and I don’t want to go back to shoving a tube in my child’s nose so he can “eat”, spending the night at children’s hospital for surgeries or procedures, guessing when the right age for a feeding program will be and holding my breath every time he gets a cold wondering if this will bring all of the pain memories back. I want to be able to make baby food and feed a child other than my nephew. I want to have cheerios on the floor for Mulligan to clean up. I want to see the funny face when he gets to have his first birthday cake and gets frosting everywhere. I missed all of this before and thought I would get the chance this time. It would make me feel better if instead of saying the above they said boy this sucks, you guys have really gotten the short straw.
I say all of this and then think of all of the families that are dealing with bigger problems like cancer, autism and other diseases. One trip to Children’s Hospital puts everything in perspective. This is our challenge and we will meet it head on like we did with Jack, but from time to time we are allowed to feel sorry for ourselves and cry or get angry. We wouldn’t be human if we didn’t have those moments.