I haven't written anything here in quite awhile and I really should be. I'm stuffed deep inside my head right now and I think there is a fear that the things I want to say will be incoherent to most of you, or something like that. Thing is, I need to say them anyway. Someone out there feels the way I do right now (or will or has) and even if they don't.....I will read back over this someday and wonder what in the heck was going on that I was so freakishly silent in the weeks leading up to this second surgery. So let's see how I do here, eh?
There is so much buzz and pressure within and around me right now that it's difficult to endure it. I feel overwhelmed, overstimulated, overextended, lots of "over" things. The other day I checked in on my four year old as he was taking a bath and I found he was doing something I always liked as a kid. He was laying on his back with the water coming up the sides of his head and covering his ears. Just his face was sticking out. He had his eyes closed and looked blissfully relaxed. I can remember doing that a lot as a kid. There was something about being immersed in the warm cocoon of water that was soothing. Most sounds melted away and all you could hear was your heart beat and breathing and maybe the random undertones of the electrical currents working through the house (or something that sounded what I imagine that would sound like). There were no demands, no deadlines, no appointments, and no responsibilities. You just floated away there until someone told you it was time to get out. How lovely.
The last month or so has been especially stressful because I've been worried about my youngest son. He is experiencing some major gross motor delays and we are working our way through trying to find out why and getting him whatever help we can to improve his mobility. We are fortunate enough to have a great early intervention program available to us and are getting free physical therapy and other services. We are already seeing progress from these things, so that is heartening. In between all of that is trying to pinpoint the source of these delays and the low muscle tone we're told our son has. We have been able to rule out a few things, much to our relief, but the investigation process continues. After walking this road once due to my older son's juvenile arthritis, this is really tough for me. It dredges up a lot of difficult memories and feelings. I know there are parents and kids out there that have it a lot worse, but I was really hoping to experience what it is like to have a healthy child. All at the same time, my boys are nothing but joy and beauty (ok, and sometimes exhaustion but it comes with the territory). I have these philosophical debates with myself where I realize (over and over again) that changing any of the bad things might also change some of the good things and there is nothing else to do but let it go. I really am trying to practice keeping my hands open on this one , but it's hard some days. I also keep thinking about the six weeks post surgery where I won't be able to lift or carry my little guy. That means no helping with his therapy and that upsets me. We already lost our nursing relationship to this stupid illness during my first hospitalization, now this.
In many ways I am less nervous about being in the hospital than I was the first time. I have a level of familiarity with the hospital, the staff, the routines and all of that and it makes it easier in many ways. In other ways, I think it's worse this time. I know now how freaked out I feel about having the staples in my stomach. I know how long the weeks will feel while I'm trying to get my strength and mobility back. I know how my body will cannibalize its own muscle tissue during the days when I can't take in enough nutrients to keep it going. I know I'm going to look and feel like hell for a long while. I know I won't be able to take care of my kids, play with them, or even hug them without being extremely careful or guarded for weeks. I also know there are lab techs who show up in the middle of the night to take your blood. I don't know why, but I've been fixated on this one for the last week or so. I've had dreams where they started coming here to the house a couple of days ahead of time to get information for my doctor and help me get used to the process. Creepy. I also know there will be a couple of days in there where I wish I could go home but I'm not quite ready. I will be off of the pain pump and able to stay awake more and I will be restless, bored, and lonely. I'm not looking forward to these parts of the process.
I know this post is a bit of a downer but, you know what, it's the truth. I owe it to all of you (and to my future self) to be as honest as I can. I feel pretty beaten down right now, but I still have my fight in me. In ten days I will run that half marathon I've been training for since May. I'm going to blow my goals right out of the water for this one, I feel it in my bones. As I tackle this second lengthy recovery, I will be working to answer the question of "what's next?" Where do I want to go and what do I want to do once my life is no longer dictated by illness? Sometimes I get scared thinking "something" could go wrong. Then I buck up and refuse to listen to that voice of doubt.
There is a movie I love called "True Romance", written by Quinten Tarantino. If you know his work at all, you know that nobody does gritty violence like he does....it's almost too much for me sometimes but the overall quality of his work makes up for it. There is a particular scene in this movie where James Gandolfini is trying to shake down Patricia Arquette's character for some information he wants. He is this huge, menacing, thug of a guy and she is just tiny. The scene escalates into a violent confrontation as he tries to coerce the information out of her, but she won't talk. There is one moment in this horribly violent scene where she is all beaten up and bloody faced and she looks up at him and just flips him the bird. Oddly enough, that has been resonating with me a lot lately. I am beaten up pretty badly right now, but I still have a lot of fight left. Bring it on.