Yes, yes I did. I can't believe that I haven't blogged for almost a month. I guess I have been taking a break from everything....
In short, nothing has happened on the medical front with Manny at all. He is scheduled for an MRI in a couple of weeks, and I was assured by his doctors that it is alright to wait. I have managed to put my faith in them, and try not to worry myself stupid. Meanwhile I have been taking the boys on outings almost every day, well... at least until the past week, where I have been trying to work a lot.
I went to the various musical events with a lot on my mind, and have had a lot of experiences since I last wrote, and a combination of all of my experiences has left me somewhere in between a state of happy acceptance, and a state of intense angst, anger and despair. I alternate between these two extremes from moment to moment.
I can't believe how fast the summer has gone. I noticed only last week that Jake will be beginning school so early as August 7th. I was not prepared and scheduled our big family vacation the week after that, so we had to cancel. Maybe under different circumstances I would take him out of school, but he is already one of the "special kids" in the integrated classroom. I want him to make connections and be "integrated" as much as possible. A lot of people have trouble understanding why I would cancel our MUCH looked forward to vacation with a large group of friends for a silly first week of preschool, but things are different for us.
Manny:
Manny continues to make progress and has learned a lot of sign language. His speech is pretty much nonexistent, and the words that he does use are almost unrecognizable to anyone but his parents. His motor skills are still that of a child about half his age. He is a sweet and funny kid with a lot of personality and a lot of frustrations. I was so amazingly grateful for the huge outpouring of love and prayers for him when we found out that he had a brain tumor, although I am almost embarrassed by the fact that his "brain tumor" seems to be "no big deal" in the short term, and that we received so much charity when really, its just going to be part of our lives, and we aren't facing an immediate devastating year(s) of surgery and treatment and recovery. Well.. that may come later..... To be honest, I was hoping for answers, for a cure, for surgery that would cut whatever was making my kid all messed up out of his head and make him "normal." That just isn't the case. He is a classic case of regressive mental illness and all we can do is wait and see how bad it will get, or how badly we overreacted....
Jake:
Jake can delight me or make me insane.. sometimes in the same moment. I am so proud of his ability to navigate everyday life and adapt. His speech improves, though you have to listen SO hard to really understand him, and sometimes I'm the only person who has practiced hard at speaking his language. Even then, I have days where I just DO NOT get what he is saying. He speaks in riddles.
He has spontaneously begun the process of potty training, which is very surprising to me since he still seems to not care if he is wet. If I remind him every hour he will pee in the potty but if I forget he walks around wet. He still has not pooped in the potty which gets messy since I let him go around diaper free, if not for any other reason than to save laundry and money.
The Family:
Steve works hard all week and I stay home with the kids and try to work. His parents are moving up here this weekend and supposedly Steve's mom is going to start helping me with the kids a day or so per week. It would be a great help, but I'm not getting my hopes up yet. On the weekends we go play. Jake experienced his first kayaking trip on the Hiwassee river. Well, not really a whole trip, but I picked him up at the upper end of the camping area and we floated to the take-out. He was at ease and it was really cool. I can't wait to take him down the entire river... probably in the spring.
Me? Do you want the "I love my kids, I am so blessed" version or the "I feel like a prisoner and a slave to my situation and I'd do anything to get out of here" version, because I am capable of both. I feel a lot of pressure. I try to internalize a lot of my worry, but it just comes out in outbursts of yelling and anger. If I'm playing with my kids and family I feel like I need to be working and if I'm working I feel like I need to be spending time with my family. The cycle of guilt is really starting to get to me. I need to be doing more with Manny... getting him into early intervention and all, but I am so tired, and honestly, I wonder what good it will really do. Jake begins school in one month and maybe I can find some sort of balance then. I can be honest and say that I am really only happy when I escape from my kids for a few hours or when I am out and about WITH my family, playing and having fun. Everyday life, chores, work, therapy, doctors appointments, homemaking... I dread the days when that is all that is in store because there is just so much, and I never accomplish what I feel is expected of me.
I know very very well that I have no right to complain, and I am reminded of this fact constantly. My bitching is yet another source of guilt for me.
Tomorrow we are taking the kids to the Cherokee Farms Fiddlers convention. Its a 2 night music festival and I am going to be peddling my sewing in a booth. Steve will be in and out but will mostly be helping his parents move, so I'll be on my own part of the time with the booth and kids. I was really excited about challenging myself by keeping both kids both nights just to see how it went, but Steve says he is going to bring the teething Manny home at night and I really can't argue. I am disappointed but he is probably right.. I probably couldn't handle it. I'm nervous and excited about vending at a music festival after so many years and I've worked my tail off just to be able to afford the vending fee. Whether I lose money, make money or break even, I know that it will be a great experience for the kids, and that they'll come home exhausted and happy and begging to "go camper see the music!" again soon.
