The last night we were in San Francisco was particularly hard on Zoralei. Though the program demands a limited amount of visitors (just immediate family), not being able to have that sense of normalcy and support really through her a curve ball, especially as they were challenging days to meet her goals. My friend who visited Zoralei for an hour each night said she spent a little time holding Zoralei who was crying that she missed her parents. Everyone else on the floor is there for a different reason and so they are constantly surrounded by a family member, even during their physical and occupational therapies. Zoralei does not have that luxury of support and she told me that when they were all talking about how grateful they did not have to do it alone and that their families were so fantastic, it was heart wrenching for her, especially to have us out of town for two days.
On Friday, my husband and I took all the kids to the hospital to see Zoralei. Originally, we were just going to have one of us go, but I could tell by her complaint that she hasn't seen us for a few days and needed us just like the little ones did, that our being gone had been very hard on her. When we arrived, she did not like the change in plans as we surprised her and she had already decided what she was going to do with her dad (and half the floor). But after an initial grumpling, we watched a movie I brought on my laptop and her father took her to the downstairs cafe to get ice cream for everyone as a treat during the movie. It was a nice visit and ended on a pleasant note. In part that may have been because she said she had less physical therapy that day and that what she did have was broken up, so it wasn't hours of it in sequence. She did not seem quite as tired. In fact, she was bragging about her arm muscles and how buff they seemed to be getting.
Zoralei was very proud that she had maxed almost all her timed activities. That means when you have done them so often, that no matter how many times you do it, you get the same result. It means you are at max capacity. Once you max all those activities, you aren't stuck repeating something over and over until you improve. Also, she is starting to plan some of her own at home (what she does for homework) workout schedules. They are definitely prepping her to be ready to do this on her own. For Sunday, she has to do one of her at home assignments when she is actually on leave from the hospital.
After two weeks, Zoralei still favors her arm so I know there is still pain. When her brother walked by her and almost bumped her, she immediately jerked her arm back and said, "Hey, watch out for my arm." That happened a couple of times, so I don't think it is merely a habit that has yet to be broken. I think she is still favoring it.
Saturday came and we got her first leave from the hospital! We picked Zoralei up at 2:20 since her schedule of activities ended at 2 pm and she needed a shower. We then went to her brother's flag football game and she was able to visit with a friend we had brought with us. Afterwards, she went to the house where more friends showed up and they chatted on the porch, before we all went out for dinner. We had six hours to take her out of the hospital. It went well. Sure, she talked about what she does at the hospital with her friends, but she did not complain of the pain and did not have people fetching things for her or anything. She wasn't necessarily seeking to run a marathon or anything. They just sat and chatted, but overall, I felt it was a great visit. I could tell how stressful it was to go back to the hospital, because instantly there she got grumpy. She was snapping at her two younger sisters (who are 4 and 2 and very active), then she started the blame game. She accused me of driving the nurse away because the nurse came in and asked us how it went, I said it went well and that was it since there was not anything to report and then I turned to say goodbye to Zoralei who told us it was time to go since the nurse came. When I turned back around, the nurse was gone. Somehow I did something? In any case, my daughter was very cranky, very unhappy to be back in there.
Previous to the grumpy ending note, Zoralei shared a poem about wanting to be free to follow her heart and feeling constrained by others' needs and thoughts. When we talked about what parts of this poem reflected her and who she is outside of the hospital, Zoralei said it is worse in the hospital. She always felt like she was under her parents thumb because she was a child and when she came to the hospital, she felt like outside of the therapies she would need to do, her time and wishes would be her own. Instead, what she learned was they control everything. Things like how she could not sit on her bed baffled her and feeling like she has to be regulated in everything has been very challenging for her. She feels like by being there curtails her freedoms, her ability to be herself has been stripped away. I did try to get her to look more fully at prior hospitalizaton, and how she likes to be in control and how she hates any kind of authority,as if somehow asking her to change the laundry around is stripping her of her right to choose for herself, but with only 20 minutes and interruptions from smaller sisters and the fact she did not want to talk about that much, we barely touched the surface. I tried ask if that is how she sees her life because she is underage, has other's rules to follow, is unable to do whatever she wants, whenever she wants, and even the fact that there are multiple wants in the family that at times those take precedence. Zoralei told me that she has no problem sharing her feelings, even with the counselor, but that she does not want to dwell on them or talk about them for any length of time. That proves frustrating to her. I guess the issue is not sharing those feelings, because my children are very open, but allowing her to feel them - to cry if she needs to, to talk about them with the intent of actually taking responsibility for the part she plays, of really just dealing with those emotions so they don't just build up and blow. I guess watching the interplay of how well she is dealing with her physical pain by not exhibiting a lot of symptoms, but seeing that how she responds to people is a strong indication of how much she is suffering still and hence, seeing the real need for dealing with those emotions.
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