I got everything packed and ready for our trip last night. Steve took today off of work so that he could get Jake on and off the bus and spend time with him this afternoon. The MRI appointment was at 8 with registration at 7 AM, along with the hearing test, blood panel and then a follow up visit with Dr. Agulera (hemi/onc) at 3 PM. We were in it for the long haul today.
I woke up at 4:30 this morning, got dressed, then changed a sleeping Manny's diaper and was in the car by 5 AM. I arrived at the hospital shortly before 7 and went to registration. During registration, while I filled out the mound of paperwork, Manny began fussing and got out his sippy. He had two sips, and I was right there... letting him, when the receptionist said, "If he's a sedate he can't have that." Oh yeah, I thought, and took it away. She sent me across the hall, and informed the receptionist at MRI that he'd drank fluids. They sent us home, because his appointment could not be moved up one hour, they were too full. The nurse from MRI who informed me giggled and shrugged and said, at least three times "Well, at least you'll never forget again." "Like I said before, you won't forget again." I get it, lady, you're sending me home as punishment for not following hospital orders. I was sobbing, and had been since the first receptionist chastised me and asked me "Didn't they tell you? It says here that they talked to your husband yesterday, did he not tell you no fluids after 6 AM?" YES, everybody fucking told me... I'm an idiot. I get it. This is the first time I'v broken down during any doctor's appointment. I cried all the way home, and I'm still upset. I hate this.
Maybe contributing to my "bad attitude" is the fact that Manny never sleeps. On a typical night, he goes to bed just fine, around 8:30 or so. He's no trouble at all to put to sleep. He regularly wakes up around midnight or 1 AM and is awake until 4 or 5 AM. Sometimes he's just awake, sometimes he cries the whole time. We've tried a zillion different methods, he's been checked for ear issues, reflux, and a host of other things. I get a lot of advice on this, and all that makes me sure of is.. we're doing that wrong too. I haven't had a night of this that I didn't end up breaking down for at least a couple of hours in the middle of the night. Steve and I tag-team dealing with him every night. After many nights of this he will usually sleep for a couple of nights all night, making us think.. really? is it over? Then he goes back to no-sleep. The nights that he does sleep, I wake up constantly, wondering if he's OK.. because if he's not awake, then is he breathing? If he sleeps late or naps during the day, I have work to do, or Jake to care for, or something. Sometimes Steve's parents actually ASK to take him during the night, so that we can rest. I'm grateful, I really am. I think the last night at her house wore her down a lot though.
Its wearing on my sanity, laying there with him... feeling him get still, then holding my breath, literally. Is he asleep? Surely he is, he's been up since midnight. Oh gosh, I have to pee/cough/move my foot because its asleep, but I won't. I'll be still... ten whole minutes.. Nope, he's still awake, and I have to get Jake ready for school in 45 minutes. Oh God, make it stop.
Sometimes I have horrible thoughts after night after night of this. I honestly feel sometimes like I've done something WRONG by having children. I should have known. I've never been a happy person by myself, but when I met Steve, it was like the light finally shined into my life. Nothing could go wrong. But now, not only have I created a miserable partner, watching me be unable to bring myself up out of whatever is wrong with me, but I've created two children who seem also to spend most of their time being miserable. I should have known I wasn't capable of dealing with this, and I should have made better decisions. I feel like I've created some sort of black hole and that I should have stayed alone. I don't feel right asking anyone to care for my kids because I can't stand the run-down of how miserable they made the caregiver. I can't even understand why Granny and Pops even want to deal with them. I know they love them, but they have the option to love them from a distance, and thats gotta be too hard to pass up. A comment was made about what hell I put my parents through as a teenager in regards to the trouble I'm having dealing with my own emotions. Does that mean that it "serves me right" that I have disabled children because I was a bad kid? Have I not done anything good enough EVER just to deserve to hear Manny say "Mama."?
I guess whining doesn't really help anything. I was hoping to get everything over with today, and get whatever news it would be. Good news? Will any future appointments with Manny ever be "good news?" I'm afraid that they'll be either "nothing has changed" or "the tumors are growing." Staying the same being the "good news". I'll reschedule all of the appointments, and try this again, and yeah... I won't EVER forget not to give Manny fluids before any of the dozens and dozens of MRIs that he is certian to get in the future.
