***As of 3 pm (1/31/12), Reece has a chest infection that was revealed on a CT scan. He will be having a bronchoscopy at 7:30 am to determine what type of infection it is. Please pray that Reece is able to recover quickly from the infection(this could last for weeks or even months) and that his body responds well to treatment. Also pray that he continues to breathe well enough to give him adequate amounts of oxygen.***
It feels a little strange to not report on the details of how things are going. Realistically, other than this latest infection, there hasn’t been much to report. We are in the “pit” of transplant. The things we are seeing, including this latest infection, are par for the course. I have never seen Reece look, act, and interact the way he does, which clearly is a reflection of how he feels. His body is working so incredibly hard to make his new blood. We are at day +8, amazingly, and it will be likely not for another 10 days before we see any counts come in. Of course, I am praying this happens every day, because this is no way for him to live his life. It goes without saying that it is incredibly hard to watch and I am sure for Reece, even harder to live through.
The doctors still report that Reece is doing as expected. He has been battling fevers for the last 48 hours, so they feel it is due to the chest infection. They have been adjusting his medications to try to get him as comfortable as possible. Yesterday, they felt the morphine he was on was too sedating, which was impacting his breathing and oxygen levels. Additionally, it was making him itchy and the hoped by changing his narcotic that he would perk up, feel less itchy, and have less nausea. The itching went away this morning, but his stomach is still upset. Of course, his hair is still falling out, so that creates some itching as well. He refuses to shave it off. You can tell his hair has thinned out, although he doesn’t have any bald spots yet. If you run your hand through his hair, it is like petting a cat that sheds really badly. I didn’t know what to expect with the hair loss, but it is very bizarre. The whole thing is a bizarre dream that I can not wake up from. You know that feeling you have when you are having a bad dream and you groggily awaken just enough to realize you are only dreaming? This situation is the reverse of that. Relief comes in watching movies, reading books, and falling asleep.
Yesterday’s post was an interesting one for me. It was the easiest post I have written to date–it took me probably 10 minutes at the most to write it and publish it. The reason I mention this is not to pat myself on the back; on the contrary, it is to point out how much I can improve on many, many areas in my life. After I posted it, I kept thinking of more things I could add to it. Perhaps there will be a Round #2 in the future. I confess that the reason I even posted it was that I didn’t feel like writing a regular post and I had some things swirling in my mind that I have not been able to shake since this whole thing has transpired. There are two circumstances that I know I am beating myself up about and I know there is nothing I can do to change them. They may not seem like much to anyone else, but for some reason, my brain continues to trip over them, causing the wounds in my mind to reopen. And do they ever sting! I have always been what I call a “ruminater” of sorts. I struggle to let things go, despite my best efforts. The way I coped with this as a kid was basically confessing whatever was bothering me to my mom. But instead of doing it face-to-face, I would write her little notes, place them on her pillow, and leave until she found them and either addressed them with me or never mentioned them again. I didn’t grow up Catholic, but I had my own version of “confession” that seemed to work pretty well. As I have gotten older, I have realized that the only real releasing that needs to happen in life is seeking the Lord and letting Him release me. Even though I know I am forgiven of sins in my life, it is the forgetting part of the equation that can sometimes haunt me. So these are my “notes on a pillow” that I am sharing here regarding my inspiration for yesterday’s post and I am hoping that it will allow me to let go.
There are two situations that have been replaying in mind since Reece’s diagnosis last fall. The first is a soccer game that Reece was playing in last summer. We always felt that soccer might be a fun activity for Reece to do. He probably won’t ever be a big kid, but he has a lot of energy and he loves to run, so we thought we should sign him up and get him going down the soccer path. We first tried soccer with him when he was three and that was a mistake. He had very little interest in any of it. Thinking it was a function of age, we signed him up last summer when he was four and thought that being a year older might give him better concentration and enjoyment in actually playing the sport. We had very good intentions and always said that if he wasn’t having fun doing it, we wouldn’t force it. I can’t recall if this was the first or second game of the summer–it doesn’t really matter. We arrived and sure enough, there were several kids decked out head-to-toe in soccer gear. I expected this and let it roll off my back. Reece knows the basic concept of the game, so we expected him to join in when the kids swarmed around the ball as they began playing. Reece, instead of jumping right in, drifted to the back and barely followed the rest of the kids up and down the field. If the ball was kicked to him, he maybe gave it a slight kick, but not enough to move it away from anyone else and the ball was quickly recovered (usually by one of the David-Beckham-mini-me’s who were usually leading the pack). Eventually, Reece sat down in the middle of the field, only to get up to run over to us for “water breaks” (which are about five times more frequent than the group water breaks). I found this so upsetting or embarrassing (not sure which; maybe both) that I decided to take Britta to the play area of the park so that I didn’t have to watch. I think we went back to one, possibly two more games and then the events of the summer overtook soccer and we made very little effort to go to the rest. I am pretty certain I never deserve to be able to watch him again, even if he is the next David Beckham in disguise. The fact that I pushed the game on him when he clearly didn’t care about being there (he said it was “too hot” on the field) thoroughly irritates me. I will not force him do things like that anymore, just because lots of other people are doing it. And the thought that I actually felt embarrassed or annoyed at his lack of interest…the memory is painful for me. I need to develop some thicker skin and gain a little perspective. It is PRESCHOOL SOCCER, Terri. Sheesh.
The second reason behind my list yesterday, is a memory of Reece, Britta, and me at the gym sometime last summer. When I was checking the kids into the YMCA childcare, alerted by one of the staff, I turned around to see Reece holding Britta’s neck with his hands. They were both standing up and it appeared as though Reece was trying to choke her. Britta was clearly struggling for air. In retrospect, Reece was going through a lovey-dovey stage with Britta and I suspect he was trying to hug her, she started to wobble, and he was trying to keep her from falling. I was so taken off-guard by the whole thing and I felt so protective over Britta that I yelled at Reece. Part of the yelling was for him to let go and part was out of sheer protective anger. When I realized Britta was okay, I yanked Reece out to hall (I am pretty certain his feet were barely touching the floor) and scolded him as we were walking. We walked all the way to the parking lot in this manner to get something from the car–I lectured him the whole way. Thinking back, I know he didn’t do anything to harm her intentionally. I can not get the look on his face out of my mind. I knew he didn’t do it to harm her, but I was so angry and I just let it take over. I am usually pretty good about staying calm and I certainly don’t ever physically harm my kids, but I should have been reprimanded for how I handled him. It only taught him to avoid me or, at a minimum, that it is okay to yell at each other. After we got home, I know I addressed it with him and told him I shouldn’t have gotten so upset. We always talk through emotional situations in our house; apologize to one another. Our favorite is to “hug it out” whether it was a heated situation, something frightening we saw on t.v., something we had to do (like any number of things we have experienced in the hospital). I know Reece recovered from it; I, however, still get teary just thinking about it. I really, REALLY dropped the ball on it. And I am paying for it now and in a way, I am glad. I don’t want to make that mistake twice.
I know all parents have moments of weakness when they lose their cool. But watching him struggle and suffer and thinking back to the way I have let little things get under my skin–I have a much greater context than I ever had as a parent. I know the fun things we do together far outweigh any heated or frustrating moments we share. I still pray that Reece doesn’t remember all the rough edges I have as a parent. He probably doesn’t even remember that situation; he let it go. And after I calmed down, I was able to see his true colors in the whole ordeal. I was able to understand that he wasn’t trying to hurt Britta, he was trying to help her. I know him, I know his personality, I know how much he loves Britta and how protective he is of her. Had I not let my immediate protective feelings override the logical explanation, things would have fared much better. I think that’s my #52–I hope I never again fail to try to understand situations from my child’s perspective or fail to give them the benefit of the doubt.