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.
The Prologue
Since Rohan cannot explain what is happening to him, I have decided to start this blog as way to translate to all of you how he is feeling and doing throughout his treatment for leukemia. I also want it to be a kind of record for Rohan when he is older and able to read. With that said, there may at times be postings that might not make sense to you but will make sense to him later.I hope this blog helps all of you who care about Rohan and us better understand the journey. I already know it will help me to have more clarity while I make this journey with him.
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