Good and Bad

Today was a mixed day:  positive communication with the team helping her and negative in our dealings with Zoralei.

Eric and I met with the team for our 15 minute meeting.  I did not know what to expect, so I assumed that they would just update us on her progress. Mostly, they wanted to know what our questions were.  They were very open to talking with us.  We did ask how she was doing and learned that physically she was doing so well, but she was resisting discussing her feelings about things.  That led to us talking about our concerns about whether they acknowledge her pain while upset and they shared they are not just sitting there without compassion Rather they are telling her she can do it and trying to provide verbal encouragement, but they do not say anything about her response.  We shared some of Zoralei's comments such as she felt she could not have a bad day or one where she told my husband that she was afraid to share her feelings in case she lost her privileges of hanging with her new friends or leave of absence.  They were concerned that she was overlapping the physical and emotional elements of the program. They want her to verbally talk about how things feel.

At one point, the art therapist said that the way Zoralei painted her picture was very rapid and she wondered how that could be relaxing to Zoralei. I did point out that they are constantly pushing her physically to speed up, increase the repetitions, go go go.  And so it is not surprising that there would be a carry over in the 'relaxation moments.' Plus I am sure Zoralei is simply just trying to not have to spend more than one time on the project.  When she sits down, she wants to accomplish the end result, like her mother. This is similiar to the fact that they have noticed her 'sociability,' to the point where she cannot be left alone. She avoids being a lone. The orthopedic doctor over this case said that we could have someone visit her while we were in San Francisco, however, it must be an adult and that it would be good if she did not come the whole time as they want Zoralei to have some alone time.  My husband and I do not even come for the entire visiting hours. We usually are there for only 2 out of the 4 because we only have one car and have to wait for him to get home from work before one of us can go.  The problem is not the visitor who will surrogate for us, it is Zoralei, who refuses to stay in her room. She insists on running to find friends and do everything in her power to avoid being alone.  Our visitor will only go for an hour to an hour and a half, but I think the doctor's voiced concern is right on.  One of the girls' mothers said she and her daughter was going to rest when I passed in the hall, until she realized that might not work because Zoralei might come by.  The big emphasis is the emotional aspect of everything for Zoralei.  This greatly helped my concerns about the long term affect on Zoralei's relationships.

We talked about how Zoralei was told for a long time her pain was in her head with the endometriosis and her saying that she feels no one validates how challenging it is is representative of the same thing, that Zoralei struggles to face her emotions.  I even told them how hard this was for me as I had to question whether my response was appropriate and such.  They were going to try to clarify things for Zoralei and they said they were questioning how she feels about every aspect of the program. I think feelings are a real challenge for Zoralei, because she does not like things she cannot control and this applies to other's feelings. She shows a distinct lack of empathy and rarely asks us about how we think or feel about anything. She won't even ask what we did today.

I tried to question Zoralei a bit tonight, but she did not want to talk about feelings or the program at all and kept shutting Eric and I down.  As a matter of fact, she tried to tell Eric something, he did not realize she was talking to him and promptly she shut down, refusing to talk to Eric.  I called her on that, pointing out she did not have his attention and punishing him for not knowing she was talking to him is not appropriate behavior.  Furthermore, she was just on everyone, snapping at her brother for playing with my hair and other things not worth being upset about.   Zoralei kept suggesting we leave.  Eric took the kids out first so I could talk to Zoralei about her rude treatment of us.  She watched him leave and yet waited till we were alone, to suddenly jump up and run into the hall, making a scene of, "You weren't going to give me a chance to say goodbye?" and proceeded to hug everyone. As soon as she walked back into the room, she literally tried to change the subject. Anything to avoid the discussion.  I do not let her change it and that frustrates her even more, to the point that after trying several other topic changes, she decides to start opening and closing the door as my signal to leave.  I was not impressed.

Zoralei told me at my insistence that she is very tired.  I tried to relate that I have had to be physically active for a long period of time and that is exhausting. She got angry and informed me that I do not know what she is going through or even what they do there.  I told her if she would finish letting me make my statement, that I was expressing my appreciation about how tired she truly must be and that I understand it is hard not to be grumpy when that tired.  I am worn out after two hours.  Needless to say, she started texting in the middle of the conversation.  I told her that she was being rude. She said she has nothing to talk about and she does not want to talk about her day.  I finally snapped that she could try asking about the other person's day and that people were making a great deal of sacrifice for her and it is reasonable to expect that we all have other things going on with our days besides being at the hospital with her.  She simply replied she doesn't want to know what happens in my day.  She just wanted to beeline out the door and away from me, away from that room.  She complained that her dad acted weird the night before, that the ASL tutor stayed too long and kept her from her friends.  She just wanted to be a cranky pants I think.  I was very frustrated with her scapegoating me, which is typically what she has been doing when she is in pain.  If she bumps her elbow, it was someone else's fault.  In any case, she does not respond well to emotional questions and when she gets really upset about things, she finds a target.  I am leary of letting anyone visit her if she is going to be grumpy with them.  I will call the psychologist tomorrow and ask how we need to proceed in the future with such incidents that would help her the most.  I am worried that they might start limiting her social time.  I recognize the wisdom.  I just do not want to have to deal with how upset she will be about it.

The only positive thing Zoralei said tonight, if she spoke at all was that they lost the sheet with the times of her activities.  So she does not have to beat a score that she does not know. Actually, she doesn't know the score no matter what, because by knowing the score she would create a limit.  If it was 26, she would got to just 27.  But without the times, the staff members do not know the score either so it is still to Zoralei's advantage.

The did give us an approximate time when they thought Zoralei would be released. We are not allowed to tell Zoralei at all of course, so I have decided to pretend I do not know.  I have always thought it would take about a month, so that is what I am sticking too:)

This week began a more grueling workout for Zoralei and I think as the week progresses, she will get more grumpy.  I hope she is friendly to Lori, our visitor tomorrow night.