Friday, October 24, 2008
I’m really over this. I’m over having to leave work early to meet with doctors and social workers to see if my son is dying or may have a chance of ever leaving a hospital (this week he looks good and like he may have a chance of going home in a few weeks). I’m over putting my son to sleep to the sound of screaming, furious, terrified children. I’m over having no control over the lights. I’m over having to give my baby 6 medications at night and 5 in the morning through a tube that had to be clipped to his clothes and that goes through his nose and is taped to his face and is always in danger of being pulled out or clogged. I'm over being worried every time I give my baby a bath that I'm going to get the IV that goes into his CHEST wet or dirty. I’m over waking up at 6 am every morning and going to a hospital for an hour before I go to work and coming back for 2 hours at night and seeing him for 1 hour before he goes to sleep amidst chaos and fear and pain. I’m over my house looking like a dumping ground because we don’t have the energy to put anything away or wash anything except for underwear, socks and Simon’s onesies that are covered in puke. I’m over obsessing over Simon’s heart rate and input and output and BNP and whether or not he’s sweating. I’m pissed that every other day I have to put him on a scale and wake him up after it’s taken me 30 minutes to put him to sleep because it’s the only accurate way to get a weight. I’m pissed that I’m so exhausted. I’m pissed that I haven’t cooked in *3* months. Me. Haven’t been in the kitchen more than to boil/fry an egg or dump dirty Tupperware in the sink and never actually clean it myself. I’m pissed that I have no privacy to cry over my son while he’s sleeping. I’m over being an example. I’m over being a trooper. I’m over “triumphing” in the middle of a shitstorm. I’m over saying, “he’s stable” with a little nod of the head and a shrug of the shoulders meaning “for now”. I’m over my mother having to burn herself out to help us. I’m over not seeing the seasons change in my neighborhood and feeling like I live in Walnut Creek at work and here in the hospital but not in my house. I’m over feast or famine social time. I’m over feeling like Laura and I can’t get any downtime to do anything besides worry about him, talk about him or call our nurses about him. I’m over worrying that he’ll make it through this and go home and then we’ll go through this whole thing again and that he'll die. I'm over worrying that we’ll hit our 2 million dollar lifetime insurance cap. I’m over mainlining sugar as a way to numb myself. I’m over waking up feeling a little dead inside or so tired I just want to crawl back in bed. I *never* feel like that. I’m over Laura and I fighting about stupid things like whether or not it matters if Simon had his Broviac clamps on when we tried to weigh him 3 times unsuccessfully tonight and woke him up each time and STILL didn’t get an accurate weight. I'm sick of minutiae. I'm over Simon not getting to wear 3/4 of his clothes because they go over his head and it's way too complicated with all his lines to do that everyday.
Today I'm really not feeling grateful or graceful or like coping or being a shining example. Today I feel like this all really, really sucks and I'm over it and I would really, really like Simon to get better. This is bulls**t.
Laura: Jaime said it.