Day Two

Today was a hard day and today was a good day. She was having a lot of trouble with bladder pain and she cried a lot, but she also stood up for the first time, with help of course. They took a urine sample and we should know by tomorrow at the latest, if she has a bladder infection. I was having a tough time with Toelle's concept of "complete acceptance of what is" in regards to this. She had the breathing tube in for so long that she developed pneumonia. She has had severe diarrhea. She has always had great trouble with back pain and after lying in bed for two weeks she moans all day and shifts around trying to get comfortable to no avail. And now her bladder. She just can't seem to win. She is already struggling trying to understand what is happening to her, trying communicate with us, feeling afraid and confused. I want to scream "Please God help her to feel comfortable!" I was able to stay in the room today during her physical therapy session. It was incredible to watch, to say the least. She lost her focus on and off throughout the session, but they did a remarkable job keeping her on track. She followed many of commands, but she is still not following them consistently which is why she will go to sub-acute rehab as opposed to acute and stay at Sparrow (unless we choose to send her to Origami - if Mom and Dad's insurance will cover it). When she would lose focus and they would get her attention again, she would sit straight up, say "Oooo kay", and put all of her attention on them with this determined look in her eyes that said "I am going to do this...I CAN do this". Sometimes she was able to do it and sometimes not, but it was a wonderful feeling to see that determination in her eyes. Watching her stand was a remarkable feeling as well. I can only imagine how good it felt after lying in that bed for so long. She was doing so well that her weepiness took my by surprise. Today was, by far, the hardest she's cried. She told us over and over again that she was so afraid and scared. We kept telling her everything is going to be OK, that this is only temporary, but she was having a tough time fighting the tears. At one point she said "I'm sorry, Lori, I'm so sorry" and my heart could hardly take it. Of course I told her there was nothing to be sorry for and that she was doing so well and would continue to get better every single day, but she couldn't shake it. Finally she stopped, took a deep breath, sighed it out, and gave us a look that said nothing short of "I will fight this and I will win." It was an incredible moment. Later she pumped her first, determined and said "I'm going to chop the process". She was able to maintain that for awhile, but by the end of the day she was just so tired. She needed to sleep, but stayed awake for a long time struggling to talk to us and getting frustrated because we didn't understand. Her aphasia is always worse when she is tired. To say it was difficult to watch, is an understatement. But still, it was a good day. A week ago she was lying in bed with the breathing tube in and would only open her eyes for a moment or two, let alone move the right side of her body. Today she got out of bed and stood up. I think today she was the most articulate she's been so far. I had been talking to Dad about ordering some dinner, but I kept putting it off. About an hour passed and I still hadn't called to place the order and out of the blue Mom said "Lori, order your dinner." At the end of the day, when she finally laid down to go to sleep, I was sitting by her side and she reached over to brush my hair away from my face and said something that clearly meant I should go home and get some sleep, even though I couldn't quite make out the words. I think my favorite moment was when I started to sing "Once there was a little old ant..." and she said "Nah, screw it, screw the ant". I asked her "Screw the ant, huh? You're going to do better than the ant? You're going to kick the ant's butt?" "Yeah" she said. It was so cute. I am pretty sure that she is the cutest, sweetest thing I've ever seen.