After my six year old son jumped on his 14 year old sister's arm, a painful journey began for my daughter. Extensive casting and misdiagnosis of a possible fracture, we eventually sought a second opinion and learned that she has RND or Reflex Neurovascular Distrophy, where the spine misfires, causing lactic acid build up and incredible pain.
A couple of months later, daily occupational and physical therapy outpatient visits and counseling, we are now admitted to the program at the Portland Randall's Children's Hospital. I am writing this blog because there is so little out there to help parents and even children to understand what happens during all this and this can lead to serious bewilderment and concern about what your child is undergoing. Everything I read says, "It's intense, but worth it." What does intense mean? What gammit of emotions or experiences will we undergo? I will choose to undergo a program meant to help my child, but after only six days in the program, I felt distinctly underprepared for what we would have to experience and could have been better prepared.
We mostly dealt with a nurse coordinator before my daughter entered the program, meeting only once with the specialist doctor to be evaluated as a good fit for the inpatient program. Zoralei, my daughter with RND, was told she would spend at least three months waiting for a slot to open. Luckily, it only took two months and after three weeks for insurance approval, we were ready to begin.
We were given a general description of what to expect, six hours of leave on Saturday and Sunday (where she can come home during those hours) beginning the first weekend, visiting hours from 5 to 9 pm for immediate family members ONLY, no outside packages or deliveries or visits from anyone else, cannot discuss pain levels with her at all or help her do anything, and she cannot use her cell or computer at all during the day, she can use the phone and computer after 5 until bedtime and she can have a brief 15 minute call each morning to her parents (and only her parents). She is expected to bathe daily and to eat. No one on staff will ask her about her pain levels either.
We were told to check her in at 8 am Monday morning, which we did and learned that Zoralei actually did not begin her program until 11 am and that she really wasn't needed there so early, but for some reason the coordinator tells that time. Needless to say, she had three hours of sitting around and wondering what it was all about. I found that interesting considering that anxiety and stress can aggravate the condition. Doesn't three hours of sitting in a room, wondering what to expect create anxiety and stress? But one thing you learn in this program is that they provide a lot of alone time to worry and think about their circumstances, somehow equating alone time as a good coping mechanism for someone who experiences a great deal of stress. Honestly, I do not understand how that works to the child's advantage, especially as I know my daughter is an extrovert and one of the coping mechanism that we have taught her is to not focus on her pain by doing something else or getting out there with friends. But the approach here is to limit those relationships as not beneficial. I do not fully understand and am anxious to see how the program progresses and how this will help her.
Having received my bachelor's degree in psychology, I am very anxious to see the psychological implications of how the program plays out and the long term effects on her relationship with her future husband and family members. This concern came after the first couple of days had progressed and I saw how the program worked. During those days, I learned (from another parent with a child who is working in the same area as Zoralei) that there is a lot of crying from Zoralei and absolutely no response given to the tears or any verbal indication of pain. Not one word of encouragement or even one verbal acknowledgement that 'it is hard, but we know you can do it.' To the point that Zoralei cried 11 times in one day and no one acknowledged it, simply left her to improve her score (repetitions of an exercise or performance time) from the day before. One day she was crying so hard during the desensitization activity with a towel, that after an extended period of time, the staff simply closed the curtain without a word, leaving her alone to deal with the pain.
Honestly, I said nothing as I am not allowed to respond as if I care about my daughter's suffering and yet as soon as I was in the car, I cried my eyes out. Obviously, there are other children using the facility, whose parents can be there to help them through their therapies. My child, however, has to endure every step alone in an attempt to help her become independent and to not have anyone coddling her ( in one research paper, the doctor who established this program drew some conclusion that since most patients with RND are overachievers and parent pleasers , their pain helped them get attention from their parents as a small child would. Rather than simply concluding type A personalities, which are known to be prone to greater levels of stress, aggravate the condition, they immediately sought to assume some issue with the parent/child relationship. My biggest frustration with this is not defensive in nature, instead I just recognize that part of their program involving relationships in the life of the child patient is in part designed around this conclusion that seems to be simply an opinionated interpretation of data results and conclusively proven. A does not always mean B. My concern is that an actual biologically based problem is now treated as if it is all in the patient's psyche, almost making it seem as if those relationships are the problem in the child's life and now the child should be somehow punished for having those relationships in her life by removing or limiting their love and support. Furthermore, the child is suffering, but that is deliberately ignored, thus creating the image that her pain ultimately does not matter and what will that mean later on in her adult relationships? Will she struggle to trust that someone will respond to any pain in her life (whether physical or emotional) or will she assume she cannot depend on anyone and must immediately solve all things on her own, creating a wall in her relationships with people? How will this affect her relationship with us as her parents when she gets out? Hopefully, she will be more independent and pain free or nearly so, but will she still trust us to be there for her or will she have felt abandoned during this process and the emotional wall will begin with us?
Of course, as a parent, you want to help your child and I am helpless. Sitting on the sidelines, praying for her, doing my best to visit during visiting hours while still trying to parent five others and hoping beyond hope for the best result. Trying beyond trying to not be bothered that the dream I had that I would be there through my child's hard times is an impossibility for her during this program.
All these thoughts are going through my mind during the first few days of the program and more. I do not share them to turn people away from the program, but to present a realistic aspect to this. I am committed to see it play out, but it does not mean that every aspect of it I understand or agree with or provides me confidence. I am hoping for the results that say it is worth it, but it is as much of an emotionally roller coaster ride for the parent as the child. I see how exhausted she is by the end of the day. I hear her tell me she cannot sleep and can we walk the hall one more time so she can avoid going to her room and hence avoid going to sleep, because going to sleep means she will have to wake up the next day and start over again (the last thing she wants to do)? And every time she says this, I steer her to her room, make small talk for 10 minutes, and head out the door as if I am an emotional post with no feelings at all. It is so not easy. It is down right heartbreaking!!
One thing that has been hard is the miscommunication or lack of communication in the program. We were told we could visit our daughter for six hours on Saturday, after her therapy, but the scheduled her therapy to allow us 4 hours of visiting. It is really frustrating to feel like they tell us something, we plan for it and then find we cannot have even that little bit of time with her. Next week, we are supposed to have leave where she can come home for a time or go somewhere with us and I am hesitant to believe that they will keep their word, despite the form with the rules that says that is what we get.
The happiest part of my week was learning she made a friend there who has a disorder that prevents feeling and they were able to eat lunch together. The program made it clear that they would only allow certain relationships among the patients, only ones where they are very independent individuals. Though this friend only has a week left in the hospital, her presence has been a bright spot in Zoralei's treatment and has my daughter saying that despite not really wanting to be there, it has been worth it to meet the people she has met and that she is seeking to focus on the blessings of being there rather than how miserable she feels. I understand other children have not been able to identify those blessings and so I am grateful that my daughter, who is such an extrovert, was able to find a way to experience the support she needs to cope.
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