Things I Hate

1.I hate that I don't know what the day will bring. Each day I have a plan. It involves work and taking care of the house and the laundry and yard and some fun stuff. Right now I am going to go take a shower and get ready for work. I am going to get M-E up and take her for quick blood draw and then to school. I am going to my office and then to a meeting. Then I am going to go home and fix something for dinner and go to a meeting at the hospital and then come home and hook M-E up to an IV pump for the night. Seems simple and straight forward but then there are bumps in everyday. She might not be able to get up. She might have a fever. We might not get out of the hospital and be trapped for days at the hospital.

2. I hate HIIPA. Johnny has a new job and we have a new health insurance policy. M-E just was added. Guess what????? they think they cannot talk with me. Evidently if I learn if Children's Hospital is in the network the world will come to an end. If I can get them to assign a case manager to our case, I won't be able to talk with that person. Evidently if my daughter needs Zofran my discussion about her need violates some driving and necessary life force that will harm the universe.

3. I hate Leiquemi and how it has hidden "Normal" and won't let us know where to find it. Maybe Normal was sort of like the Weapon's of Mass Distruction. Maybe Normal was a myth. Maybe it never existed. Maybe we just thought we were being "NORMAL" Maybe Normal becomes something different for everyone. Maybe Normal is new all the time. I thought it was Normal to scream at your child: Get your hair out of your eyes!!!!! Now I scream: Get your hair out of the cereal!!!!! I thought Normal was trying to keep your middleschooler off the phone instead of trying to encourage her to talk with a friend for even a few minutes. I thought Normal was trying to stay away from McDonald's instead of begging her to eat a french fry. I thought Normal was to discourage your child from drinking soda not pleading with her to do so.

4. Most of all I hate that I have developed a whole new understanding of Medical Language. Shots are now injections. Infusion therapy = IV's. Protocols and Road Maps = what we are going to do next. Salad Bars = Death Traps. Methotrexate, Cytoxon, Ara C, Vincristine, Daunarubison, Doxarubison, Prednisone, Zofran, and a lot of other poisons are your friends. I hate that I know how to handle short term side affects. I hate that I can start an IV. I hate that I can flush a PIIC line. I hate that I know what a PIIC line is and how it works. I hate that I have this BLOG about my daughter. I hate that Mary-Elizabeth gets to Make a Wish.

5. I hate leukemia. If you are going to discover that you have something rare, why couldn't it be the Hope Diamond in a box in the basement?

She is up and we are heading out the door today. So on a good note. I love that the day is going to start as NORMAL.