Sorry for the lack of updates! I feel like I just posted about how the days here seem to drag on...but...all of a sudden tomorrow is Friday again! This week flew! Well, I can say it flew for me, but Cale would disagree!
Hmm...backing up to Sunday...it's been a wild ride this week for sure!
Here we go!
Sunday was hard. Saturday and Sunday there is nothing happening around the unit, so we go from game to game trying to keep Cale entertained. The problem comes when we run out of options. Each activity we do with him, he can only do it for so long. This is very normal at home as well. When you're stuck in a rather small area...the options become even more limited.
At one point Cale reached his max and exploded. This time it was really bad. We were finally able to get him to calm down and talked through it, but that was after removing objects out of his way.
Monday he finally showered! It had been since Tuesday...so one was needed! I guess I should be thankful he's not dripping with sweat every day or we'd need some serious body spray! Well, either that or clothespins!
The moment that he was about to explode with anger, there was a knock on the door. Saved by the EEG! The nurse, Mama, and I were all nervous because in that moment he was not happy and with the EEG he had to stay really still and quiet. Our minds filled with all the different scenarios that could take place, but he actually did perfect! In fact, when it was all over, he was his silly self! :o)
The goop all over his head is the whole reason he showered! We decided we may need to do that every morning!
That night Cale said bye to Mama, and her and I had a date to the Cheesecake Factory! I ate every single bite. Did you know they serve enough for a family of four...and I took care of the entire dish of pasta?! Wowza! Cale said, "Oh. So, you're fat." Yeah...don't worry. He said it to me yesterday again after finding out I ate two caramel pumpkins. Haha!
She is an amazing blessing. I'm so thankful I get to call her Mama...
...and that she'll still play Gold Fish with me after all these years.
I have to be honest...I totally cried when I had to hug her good bye. I went back to the room to get ready and get to the hospital and the room suddenly felt really empty. I love having her company. She seems to always keep me laughing! And with her gone...any of you want to come visit?! (wink wink)
Tuesday was up and down several different times! There were two explosions. He did great with therapy and even worked on carving pumpkins outside in a closed patio. It was still at the hospital and still a locked area, but it was outside. Fresh air was awesome for him!
Because of his explosions and the extent of them, the doctor ordered not only for someone to have him in their line of vision at all times, but for that night they had to be with him in the room. I had left a little earlier to get some laundry done and received a call (or two or three) from a very upset husband. He did not like one bit that someone was in the room with him. I called and talked with the nurse to get the whole picture and then called him back to explain. He's not able to comprehend what is taking place and I know it's incredibly frustrating for him. I was going back and forth not knowing what to do. Go back to hospital? Stay and get rest?
I know rest is crucial to be able to take care of him the way that is needed, but knowing he was so upset of course made me feel unsettled. I can't fall asleep like that!
I finally decided to stay because of a conversation I had with his doc earlier that day. I was told (in a very gentle way) that I needed to "start lengthening the period of time I'm away from the ward." He then talked about how I already know Cale but they really need to get to know him. I totally understand and I know it's not a bad thing...and I know it'll be good for me to have this break...but...it's not easy! I hate watching Cale be so sad and miserable and not be able to do anything about it. That is honestly the worst part about all of this.
Wednesday was another hard day. I told Mama before she left, I feel like for so long now, I'm always walking on egg shells. I'm sure some of you understand and are in similar situations. I never know what he's going to get upset about and I try so hard to continually make him happy.
He had another explosion and once again the doors happened to be open and he marched right off. Plenty of staff was right there so he didn't get too far. It took a while to get him to calm down and meds were given to help. By the time he came back to the room he was still upset but had seemed to be in a different state. We ended up having a great rest of the day together! I bought a large container of legos for us to play with. He isn't able to put together the lego packs that are something specific to build but I think he'll be able to enjoy just building something of his own!
Today was just a challenging day. He got upset a few times that were more intense but no explosions! He kind of stayed mad at me most of the day. Told me to go and not to come back...but forgot about an hour later because he started to ask where I was and when I was coming back. :o)
Like I said, seeing him struggle so much just hurts. I hate it.
I know eventually we're going to get to the other side of the bridge though! I'm hopeful and catch myself day dreaming about getting to go home and keep living our life as husband and wife.
Along with all the anger and sad stuff, it's not all bad here. Thinking about all that I just typed I probably made it sound that way, but I don't mean to. We've been getting to be together and Cale is mischievous and hilarious often. I love the little moments I get with him and know that when I look into his eyes it's a very sweet thing that we share.
Please continue to pray for his heart to be softened, wisdom for the docs, for us to be used for Christ's glory, and for me to love him the way he needs; the way I was created to love...
I have some more on my heart and will post again maybe tomorrow?