Drama

I don’t get any pleasure out of drama. I vividly remember a few short years ago standing in my kitchen and feeling so thankful for such a peaceful, uneventful life. Trip was 1 and we were unaware of any possible disease. Nothing much ever happened to us and it was wonderful… smooth sailing. Not now. Seems like we are in the middle of a soap opera. I’ve been a General Hopsital fan for 25 years. That’s where I prefer my drama – daytime TV. Recently, the days of my life (no pun intended) could make for some good GH episodes sans the love triangles and the fact that most characters on that show are packing heat. Heck, we even live many days in the hospital. Where is Dr. Drake with our miracle? Where is Jason Morgan? (Okay, the latter question is only because it can’t hurt to have some nice eye candy while in the hospital. Don’t judge me. Besides, Colson doesn’t read this.)

We checked into the hospital yesterday by noon. Trip started chemo at 9:00 p.m. last night, which is ridiculous on so many levels. I don’t even have the energy to type the multiple reasons for the delay. I just know that delay will push us into staying a 3rd night because of the timing of his blood work and testing for methotrexate levels. Trip cried the minute he woke up on Thursday because he didn’t want to come to the hospital. He keeps asking when we can leave and why is this taking so long. We haven’t even been here 24 hours. He did do much better getting his port accessed this time. Gaky has been here helping me (thank the sweet heavens above). She is able to shift Trip’s focus from thinking bad thoughts to things like naming different types of birds or watching trains. I don’t have that talent. Plus, Trip informed us this week that all of this is my fault. The reason we go to the hospital, the reason he has to take yucky medicine, the reason he has to get two shots a day… it’s all my fault. I’m sure he needs a place to put the blame and I’m the easiest target since I’m typically the one “making” him do all of the things he doesn’t want to do. Guess I have to find comfort in the fact that I’m doing this for “his own good” even though I’m not very likeable at the moment.

Trip entertains a lot when we are at the hospital. Sometimes it’s out of frustration and the doctors laugh even though he’s calling them names like “Crocodile Ike” or telling the doctors they aren’t on the “good team”. Last night I was holding him in his bed while we were winding down for the night and the nurse was getting some labs and suddenly he said, “I think I’ll smoke a cigarette when I turn 18.” I said, “WHAAAT DID YOU JUST SAY???” The child always comments on other people smoking and how gross a cigarette on the ground is and now he knows what age he needs to be to buy them??? The nurse died laughing, which put Trip on stage again, but I sat there in shock. First of all, LCH and cigarettes don’t mix. There’s something called pulmonary LCH and since there is a high probability of this disease returning four times in his lifetime, cigarette smoking will only make the chances of beating it harder. Does the fact that I’m panicking to Trip make it all the more interesting to him? Should I ignore it now or start to explain it to him? (I didn’t have any answer last night, so I simply told him I would sit on him if he tried to smoke. Mother-of-the-year right here, people. Watch and learn.)

Then my mind jumps to his diabetes insipidus. What if he wants to go to a friend’s house for a sleepover and feels left out because all he wants do from 6-8 is drink and pee? Do I interrupt the sleepover at 8 to give him a shot? Or if he’s finally on pill form, will he remember to take it or even answer the phone if I call to remind him? Okay, I’m reeling it back in, but this is the stuff I’m contemplating when my child is only 4 and should be going to preschool and playing with his friends without a care in the world. Disease compounds the normal parenting problems. As Kristin, my friend and fellow histio-mom says, it’s time to change my expectations. The thoughts of how life would be and should be constantly have to be adjusted, so maybe it’s best not to have any expectations. She, unfortunately, has had to become an expert at not having any expectations.

Trip had two appointments on Tuesday and was seen separately by a tech and a doctor who hadn’t seen him in a couple of months. They both commented on how great he looks. They thought his skin and eyes were much better than the last time they saw him. That is wonderful and makes me feel great that we are possibly doing something right, but will we ever be able to stop? Will he be a kid that has to stay on chemo indefinitely just to keep this awful disease at bay? I’m stopping myself now before the wheels completely come off.

I’m sure you’ve noticed by now, the time spent in the hospital is free time for my mind to wonder illogically. There wasn’t much sleep last night but there never is in the hospital, so I write to get all of this junk out of my head. The good news is today is a new day, a fresh start, and I’m blessed to be here to experience it.