I realize it's been awhile since I've written, and I apologize to those of you who check the blog regularly. We have had some technical difficulties with our laptop. To make things easier, I am going to try and do a regular post every Monday night.
This phase of chemo that Rohan is in, interim maintenance, has been much easier than the previous two. He has lost the puffiness and bloating from the steroids and looks more like himself. He is also back to being energetic and happy. Now as you can imagine this makes me and Ravi feel better; however, it does have a drawback. Since he feels better, Rohan wants to do more and go places and gets bored just being in the house. But the thing he doesn't necessarily understand is that he is not better and still has restrictions. As the weather gets cooler, staying home all day is becoming more trying for all of us.
Halloween is on Friday and he will be able to go trick-or treat...hurrah!! Rohan is going to be a fireman and suggested that "Arya can be the fire dog," i.e dalmatian. Since Arya has no real preference, she is going to be a dalmatian puppy. I am excited and grateful because this will be such a normal activity for him.
His night terrors have subsided. Thank God! He doesn't like it if Ravi or I go out at night, and he has to go to bed without both or one of us. I think he just wants everyone at home. The irony is, this is the most time we have all spent together - just us. We're pretty much home every weekend , and Ravi is home from work at least once a week. I guess there is some grace in that.
Monday, October 27, 2008
Thursday, October 9, 2008
Milton Failed
Yesterday we began the third phase of Rohan's treatment. It will last about 2 months. This phase on some level provides with some room to breathe because (1) there are no medications to be administered at home and (2) he only has one or two spinal taps for which he has to be anesthetized. So we hope it gives him some respite from the upheaval. And as you will read, he has been experiencing some emotional lows.
Both times that Rohan was admitted into the hospital, we thought it was the hard part. And it was immensely difficult. Being at home, in one's own space, is a salve in itself. Lately, however, being at home has become increasingly difficult. It seems that our little boy is acting out his trauma by having screaming tantrums while he rolls around on the floor. They usually happen at night and there is no specific goal to the entire 45 - 60 minute ordeal. He begins in a slow whimper and works his way into a crescendo of piercing screams. Nothing can soothe him in these moments. He does not want us to ask him what's wrong, what he wants, if anything hurts, etc. He doesn't even want us to touch him and will move away if we try. This scenario has played out for the better part of an hour for the past few days. And then as quickly as it began, it vaporizes. And Rohan is back to himself.
Since he is not in any physical pain and is not crying because he wants his way, we assume that it is trauma. Even then, it is difficult, when it is midnight, to not get sucked into the vortex of the tantrum. I have not always been able to remain calm, and neither, surprisingly, has Ravi. We're trying some methods that the social worker at the hospital recommended. We were also glad to hear that Rohan was not the first child to act out in this way. She said that it will most likely pass.
His entire life has been truned upside-down, and he doesn't have the nuance of language to express his thoughts and feelings. The first two times I cried after it was over. How much angst and fear must he be experiencing for such a thing to happen? On top of all of the hospital visits and spinal taps and IVs and medications, does he need this?
Throughout this entire experience, I have been mulling over Milton's famous line "Justify the ways of God to man." Milton wrote an epic poem to try and do just that. But living through this ordeal, I'd say he failed because his goal was like the horizon...unreachable. I cannot imagine anything that would justify my son's suffering. There is nothing that would come close to even being acceptable as an answer to the question, "Why is this happening to him?" And lately, I've concluded that not having an answer is better. Because to acutally be able to justify this would say more about this world than I care to know.
Both times that Rohan was admitted into the hospital, we thought it was the hard part. And it was immensely difficult. Being at home, in one's own space, is a salve in itself. Lately, however, being at home has become increasingly difficult. It seems that our little boy is acting out his trauma by having screaming tantrums while he rolls around on the floor. They usually happen at night and there is no specific goal to the entire 45 - 60 minute ordeal. He begins in a slow whimper and works his way into a crescendo of piercing screams. Nothing can soothe him in these moments. He does not want us to ask him what's wrong, what he wants, if anything hurts, etc. He doesn't even want us to touch him and will move away if we try. This scenario has played out for the better part of an hour for the past few days. And then as quickly as it began, it vaporizes. And Rohan is back to himself.
Since he is not in any physical pain and is not crying because he wants his way, we assume that it is trauma. Even then, it is difficult, when it is midnight, to not get sucked into the vortex of the tantrum. I have not always been able to remain calm, and neither, surprisingly, has Ravi. We're trying some methods that the social worker at the hospital recommended. We were also glad to hear that Rohan was not the first child to act out in this way. She said that it will most likely pass.
His entire life has been truned upside-down, and he doesn't have the nuance of language to express his thoughts and feelings. The first two times I cried after it was over. How much angst and fear must he be experiencing for such a thing to happen? On top of all of the hospital visits and spinal taps and IVs and medications, does he need this?
Throughout this entire experience, I have been mulling over Milton's famous line "Justify the ways of God to man." Milton wrote an epic poem to try and do just that. But living through this ordeal, I'd say he failed because his goal was like the horizon...unreachable. I cannot imagine anything that would justify my son's suffering. There is nothing that would come close to even being acceptable as an answer to the question, "Why is this happening to him?" And lately, I've concluded that not having an answer is better. Because to acutally be able to justify this would say more about this world than I care to know.
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