Sleep......where are you?

For the second night this week, I can't sleep. I went to sleep around 1 (early for me lately) but was awoken by Jaden having peed in his bed and needing clean sheets. I changed his bed and got him all set up again for sleep, went to the bathroom, and guess what? I can't sleep. Darn it. I'm going to try to take Logey to Gymboree tomorrow since he loves it now. But, Vidal needs to fix his car so we'll see how it goes. I also really want to go to the Bible study tomorrow but I know I'm already behind. There is homework. I wasn't able to go last week because I thought it didn't start until this week and then it turned out it did and Logan and I had already gotten home. Lately I've been trying to get him into a routine of being on his feeding tube while he naps and all night so the food goes down easier and he isn't tethered all day. So, we'll see. Honestly, I would love to go and only participate to the extent of listening to all these wise women. Sometimes I feel so inept. It's like my brain quit on me. Sometimes lately I also feel so down and I'm not sure quite how to get "out of it." I don't let it affect me in the sense that I still do stuff with my little people, etc. but sometimes I know that my attitude is not wonderful. I wish I was one of those graceful women who didn't get upset about their child being sick. Honestly sometimes it pisses me off. Because it's just not fair. Logan is the sweetest most upbeat kid and he amazes me. Logan has his last sweat test coming up soon. I don't need prayers that he doesn't have cystic fibrosis, just prayers that I can get through it if he does. I know I should just be greatful that he is alive and here with us because 11 months ago it was a very real possibility that he wouldn't be. But, cystic fibrosis on top of everything else he has to go through right now. Seriously? It's not exactly that I'm upset with God. But I feel like I'm saying, "you say you won't give us more than we can handle. well, I'm good, thanks. Pass it around a little." Not that I would want anyone else's child to be sick. I wouldn't wish any of this on anone, ever, no matter how snarky that girl at the WIC office was to me today. I was reading an old blog from a woman whose son also has ESRD, he is a year post transplant, and she was saying that this changes you. And it's completely true. It does. You never feel like you will be that person whose kid gets sick and at first when your kid is chronically ill, you don't even really believe it, you do to a certain extent but on another level you really don't. Especially when your kiddo looks healthy. The girl who bagged our groceries the other day noticed Logan had a runny nose. He had been crying for a minute because he wanted out of the cart. She asked me if he was sick. I was like, well, that depends......... Because in some ways he's not sick at all and in others he really is so fragile. Looking at his lab numbers lately make my heart miss a beat because I know despite how great he looks, he's getting worse. I asked Dr Al-Akash what we could do to make him less nauseated and he said, "Get him a kidney." Now when I got home I was almost irritated that he couldn't do anything. Then I realized, he's right. He loves Logan. Dr Al-Akash seems to genuinely love his patients and I think that if he could make him well, he would. I feel very helpless sometimes because I can't make him better. I wonder if he feels that way for his patients. Through all of this, I know that we really are truly blessed. We have a staff at the nephrologist's that really seems to care about their patients. When I call to talk to his nurse Julie she either talks to me right then or she will call me back within a few hours. I know this is probably not the norm. But, The Kidney Center takes their patients very seriously and they really seem to love them. I doubt that other centers give their kids such time. It's definitely worth the 3 hr drive. It honestly makes all of this so much easier. I think if I had to deal with nurses and drs or even office staff that I wasn't so fond of it would make this all much harder. And really, parents with chronically ill children have enough to deal with. Sometimes when people make my life harder like the lady at WIC today I want to tell them, if you knew how hard things were right now you wouldn't act like that. It's not that I want any special treatment, just to be treated respectfully and kindly. Is that really too much to ask? I think everyone should be treated that way but especially people who have extra on their plates right now. But, then, who doesn't have extra on their plates? Logan has an appt on the 18th for lab and iron and possibly the sweat test and then clinic on the third of March, surgery on the fourth of March, and we'll stay overnight to be sure dialysis runs smoothly. Honestly I'm more worried about the sweat test and Dr Almond checking for the right vas deferens at this point. The surgery itself is pretty uncomplicated, he's had much worse. Though when your baby is under the darn clock never seems to move no matter how uncomplicated the surgery. I wish I could just tell whether or not he has cystic fibrosis but now that we're here and it's time to test, part of me doesn't want to. Part of me would like to remain in the dark. It's easier in the dark sometimes. It won't change anything right now if he does have it, just add to my worry. The very real possibility of having to bury your child is a very scary one. It's not something that you can gloss over and make pretty. It changes you. I know that everyone has that possibility but knowing an accident could happen is so much more different than knowing how sick your child is. I feel for every mama who has gone through or is going through that feeling. Sometimes it's better not to think. Unfortunately I was born with an inability to shut my brain off. I swear if I wasn't still nursing Logan I would be addicted to sleeping pills. Well, I guess I should attempt sleep if only to cuddle up next to two of my favorite people. I know one day all too soon I will miss those baby snuggles and his little soft wisps of curl. I know soon he will be a big rough and tumble boy. Someday this will all just feel like a small time in our lives. Maybe even someday soon. Little bear was 18 lbs 9 oz this morning (and night). That's 8.43 kg. It looks like he just might make my goal of 8.5 kilos by his birthday. We now have only a tiny bit over 1 1/2 kg to go. I can't say that I will miss the dialysis machine. Though I am greatful for it. Someday this will all feel like just a dream.