Coming home

It has been a busy couple of days at our house as we have tried to juggle health issues for my husband and Zoralei's hospital stay.

Tuesday, I was conferenced the staff meeting and they told me Zoralei was maxing all her timed activities and was doing very well. They said they still noticed she had a lot of anxious behaviors and asked if she would continue to see the counselor she saw before.  I reassured them that she would be doing so. They told me that Zoralei was scheduled to come home on Friday.  I personally am concerned it is about a week too early.  I have really have barely begun to notice improvement and they are already sending her home.  I kind of feel like she needs to make time to assure it sticks.  In any case, I am happy to have her come home, but I am wanting to make sure it is successful as I know she is not pain free yet.  The hardest part is knowing that she is coming out with almost as much pain as when she came in.  At this point, they were having her design a lot of her own programs and were working to prepare her to go home and be independent.  We again were told that we could not tell Zoralei we knew she was coming home.

That night I visited with Zoralei and she seemed off. She kept trying to curl up and was anxious for us (her sisters and I) to leave.  Apparently, she had startled her monthly and was just not feeling well.  We watched the movie with her at the hospital and visited in the room a bit before heading out.  She had a long day scheduled the next day.  With most of her friends having been discharged and the one girl who was left needed a lot more care, so she was not quite as flexible to visit or roam the halls, Zoralei seemed a little lonelier too.  I asked her if she had any sense of when she might go home and how the staff thought she was doing. She said she believed it would be in about a week. She did not feel quite ready to go home and felt there was other things she still had yet to learn, but that she was very close and felt the approval of the staff for her progress.

The next afternoon, Wednesday, I received a call from the occupational therapists.  They wanted to know with everything going on if Zoralei would have time to do her at home workout.  I reassured them that Zoralei was very independent, was not a built in babisitter, and that if she did not accomplish her workout, it reflected that it was not her priority or it was poor time management on her part.  I found it interesting that this is the 2nd time where because Zoralei is the oldest at home, they seem to suggest that we do not allow her time and space.  Ironically, Zoralei is hardly around (one of our big beefs with her) and so the issue is not how demanding of her we are.  Obviously, between the concern expressed over whether she would still be seeing a counselor and the concern about whether we would make sure she takes care of herself at home, there is some hesitancy about releasing her.  Ironically, I have the same concerns, but I suspect they will go forward anyhow, especially with me assuring them their concerns are not a problem.  My concern is more that they are releasing her too soon - not giving her enough time for the progress to become a habit.  I did call back and leave a message that there needs to be emphasis on time management and even sacrificing things sometimes for her own sake. For instance, refusing to change the laundry around for me because she has to do her at home workout simply so she can go out with friends for 3 hours is not likely to be permitted here. She will need to change the laundry around, do her at home workout, and settle for a mere two hours with her friends, something Zoralei has never been good about doing.  I am leary that the at home workout does not become the catalyst for Zoralei trying to not be involved in the family since as a teenager, she finds plenty of reasons to have to do her own thing.

Wednesday, Eric went up to the hospital and visited Zoralei.  He brought the boys with him to the hospital. Zoralei brought everyone an ice cream sandwich and Eric said she seemed to be in a good mood.  She says she finally feels like she is in a groove.   Of course, when I called, she did not have much to say because she does not like to talk on the phone.

Today, Zoralei called mid-day to let me know that they told her she was going home. She felt it was too soon and planned to tell the counselor so. When I saw her tonight, nothing had changed.  She was still coming home tomorrow and was having very mixed emotions about it. She was really going to miss people, was sad for her one friend who now was losing Zoralei too, did not like how abruptly they changed it as she had no time to adjust and get used to it, and would miss the undivided attention of the nurses and specialists.  We have a big family and we work hard to meet everyone's needs, including giving a lot of time to Zoralei, but realistically, she is not the center of our household and that has been hard for our older girls, whose age differences from the rest of our kids has allowed them to experience being an only child for a while.  It was with a heavy heart that Zoralei prepared to say goodbye, already asking when she could come visit her friend who was still here.

I attempted to talk about feelings and Zoralei immediately got annoyed with me, saying I like to talk about feelings too much.  There was a moment when she went for a walk and I stayed in the room to pray and eventually call her dad about our disagreement.  She came in when I had begun to talk to her dad and so I hung up. She apologized and said she just feels like my perspective is too much from the feeling side for her taste.  We talked briefly about how she wants everything, including conversations to be about subjects that make her comfortable or for the person to share their experiences only in ways that make Zoralei comfortable - that she has been like this since she was a little girl and spent basically 5 years as an only child since her older sister mostly lived with her biological mother. Zoralei was used to the world revolving around her. Even now, with such an age gap, there are many privileges and things she does that the other kids do not do.  Everything her brothers do are almost always done with her other brothers and same thing for her younger sisters, but Zoralei does not have anyone to share with and sometimes having to share has proved challenging for her.  Zoralei actually thanked me for giving her a perspective she did not have.  At first, I thought she was being sarcastic as I feel we have said this before in some fashion. But she was genuine and said she had not thought about how she really did like things to revolve around her and that was eye opening.  We pretty much moved to a different topic at that point, but I felt like it was a real indication about how Zoralei was working on being more open about her feelings so she could cope with them better and more aware of others as to be a little less focused on herself and ultimately how much she hurt.  We walked to get food with her friend and then Zoralei and I played UNO.  I do wish sometimes I was a bit more superficial as my daughter prefers that, but I appreciated how Zoralei opened up about her emotions about leaving, even though she cried and I am sure felt vunerable.

One thing Zoralei said that was the biggest struggle is that she was not pain free. She came in at a level 8 pain and was only leaving at a level 6 to 7. Today they blind folded her and shot nerf guns at her arms and randomly brushed up against her without her knowledge.  She said it was extremely painful. She said she planked with a ball under her legs for a solid 25 minutes while playing a card game with the others in the room. It all hurt, but she could do it.  It was hard for her to envision that after 3 weeks the pain had lessened only slightly that it was really going to go away and that although they said she would probably not be pain free, she figured she would be at least a 3 to 4 level.  I agree, it is the hardest part to deal with.  I recognize their whole goal is simply coping better, but realistically as a parent, you want to see your child free of pain, you want to see the cure and considering how physically demanding this program is and how emotionally draining it is (as Zoralei talked about in detail tonight), you would hope the results are truly worth it and provide the maximum benefit of pain free.  It is not so and it is a bit of a let down.

Zoralei said she talked today about perspective. She said if you fill a glass, it is half full, but if you have just drunk it then you would consider it half empty. It isn't just a matter of how you say something, it really is the circumstances that change the perspective.  I think that is very true and as she has tried to learn to change what she talks about, saying things like how uncomfortable it is, rather than it is painful, that perspective matters greatly.

They said when Zoralei entered the program, she would be begging us to take home.  She never did that, knowing that we said we could not respond to such remarks.  However, they also said when she left she would absolutely love those she worked with. She told me she felt just yesterday she had gotten to the point with one of her caregivers that the caregiver seemed to actually like her and was not just being all business like.  There has definitely been a shift in how Zoralei perceives them and even those she felt were a bit callous in the beginning are being talked about in a different manner - her impression of them has shifted as she has triumphed and they have praised her for how hard she has worked, how fit and strong she seems. The more she accomplished, the more she was able to feel their encouragement (to acknowledge probably what was always there) and to thrive under it and connect with them, mostly. She says there was a couple of staff that she did not completely connect with, but even with them, she had kinder things to say and would defend them if I questioned something she said.