Our life is a bit more complicated than our daughter's RND. Next week, my husband and I have to go to San Francisco to meet with a liver transplant specialist since my husband has cirrhosis, unknown origin. We have been dealing with back to back appointments for him since May when he went into respiratory failure over a gallbladder surgery and overreactive liver. We asked the RND program to allow an adult visitor to replace us for the two nights we would be gone. If that did not work, we asked if our 10 years old son can be dropped off to play games with his sister. There is obvious hesitancy to allow any social interactions, even in our absence. We were told no, then they would consider it and a week later, they are still unsure. However, some of the staff have been remarking to our daughter that they heard a friend was going to visit in our absence. She is looking forward to it, yet when we question it, we are told it does not look good. It has been frustrating. The communication is a real problem.
Each week we get a 15 minute meeting. The first time, we were supposed to have 25 minutes, but there was a scheduling error, so we only got 15 minutes and most of the 8 staff members that were there left before our time was up. How does a parent, unfamiliar with the program, get any sense of what is expected? How to handle situations? Understand why they are doing what they are doing? All in 15 minutes? Sure they ask if we have questions, then they hustle out the door. They do not provide any program for the parents to help cope with the fact that they are essentially isolating their child and providing no compassion or empathy during their suffering. They do not provide time to ask questions and the one question I asked, "How do you help them to not become desensitized to all kinds of pain? Will they still come and tell us when something is wrong, so they don't ignore some issue until it is stage 4 cancer?" (If you knew all that Zoralei has undergone the two years before with an ovarian cyst as well as appendicitis and severe endometriosis (the last two at the same time), this would not seem like a real stretch in our family.) There was some general response about how RND is obviously different and the child should be able to tell. Such a vague response did not exactly put my concerns to rest. Are they talking about the differences? How do they teach her to recognize the difference? How do they teach her what an appropriate pain response is, when they do not acknowledge any of her pain responses? Yet, in 15 minutes, I cannot really ask them to delve into this and having only seen the specialist once because he did not need a followup, I feel like we are left to draw our own conclusions. The internet is only so helpful.
My biggest concern right now is simply how to undue any possible damage to her ability to depend on others and trust them without undoing the program's positive effects. There, of course, is not any discussion of this within the program. I really feel unable to ask questions because if I ask too many, I am treated as if I am a real coddler (this is laughable because with six kids still at home, I do not have time to coddle! My lack of nurturing and coddling has been an issue for both my older teenage girls. I homeschool as well, so I expect a high level of independence from my kids.) They mentioned working on coordination and I joked our family was klutzy and was immediately told that is a self-debilitating comment. As long as our klutziness is not used to inhibit what we need or want to do, why can't it be acknowledged or joked about? Anyhow, I am just not sure if I question too much that I will come across as genuinely curious and intellectually concerned or just a parent who can't handle the program. The latter is not true nor is it an impression that will help Zoralei's care as some of my insights as her parent could be very helpful in guiding her, but if they label me as overprotective and coddling, they will not take those suggestions seriously.
Another thing we were told is that she is to absolutely have no medication of any kind, except perhaps pamprin for her menstrual cycle. She could not sleep the first night and is now being given a sleeping pill every night. I would rather her get a good night sleep than not with such a physically demanding workout, but I find the program inconsistent in ways that are difficult for me.
Again and foremost, I have truly been troubled by the lack of emotionally empathy displayed to her when she is crying. I understand ignoring groaning and moaning or dramatic over exaggerations that plague teenagers, but I do not understand the pain being so intense a child is sobbing and there is absolutely no compassion shown. Love, expressed as simple words of encouragemetn, is widely accepted as a healing balm in most situations. If the child succeeded at home in curing their RND with a long enough program of outpatient program, then they would have had their parents and friends supporting them the entire time, acknowledging the pain and yet asking them to push past it. This was not detrimental to those children or every one of them would end up in the RND inpatient program. So why in the inpatient program is it suddenly so essential to express no compassion whatsoever? Most kids who did not succeed outside the inpatient program probably did not succeed because they were not motivated to put themselves in that kind of pain for 2 to 5 hours a day, because their time available to invest in workouts was too limited to do the good needed, or simply because the at home pace is slower to heal on their own. A child needing the inpatient program is not necessarily coddled at home- that would be a stereotypical assumption that should have no place in good science. I feel like something valuable is missing, something crucial to preventing long term negative emotional and relationship damage resulting from the treatment process. If nothing else, as a mother, it upsets me to put my child where she is not getting the kind of care I would want any child to receive. This, as I mentioned in a previous post has been the most difficult part for me. Second to it would be the communications errors and lack of information.
I want to focus more on what the program treatment is for Zoralei now that I have talked about my concerns and fears and lack of understanding.
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