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.

Monday, November 10, 2008

Euphoria & Misery

First things first. Last week I ended my entry with some anxiety regarding the election outcome. Today I have to begin by saying it truly seems we are on the dawn of a new era in this country! The night before the election I fully realized the impact of an Obama presidency...at least for my children. A black man being president is something they will always know and within that is the example of a true meritocracy. The world they know will seem a bit more tolerant. "Yes we can" will have a truer resonance for them.

Okay now that I've gotten that out, back to Rohan. He had a spinal tap last week which he hadn't had for a while. It went fine. One of the medications in the cocktail causes his appetite to be sppressed. As a result, he has done a complete 180 from six weeks ago. Whereas in the beginning he couldn't eat enough food quickly enough, he now eats almost nothing. For example, up until 6 p.m. today he had only had a glass of milk, a granola bar and some crackers & cheese. No real breakfast or lunch. And I have been offering him anything, everything! Needless tosay this is worrisome. One of the other medications he takes causes his eyelids to droop which makes me think he is tired all of the time. Rohan's eyes, which are normally so full of sparkle and life, look lifeless and ever so small.

I cannot stress how difficult it has become for both of us to stay home all day. He is easily agitated to the point of tantrums; he is so bored that he needs to know what he is going to do next while he is still doing the previous activity; and today he asked me on and off for an hour about who could come over. All of this in turn makes me angry because I have to parent through the tantrums; exhausted because I need to constantly find something for him to do; and generally miserable because I think I am probably doing it all wrong. And I haven't even mentioned Arya...a 14 month old has her needs as well. The best way I can describe my side of it is it would be like sharing an office with your boss. Not a second to do anything for yourself!

The past few days I have been struggling with the issue of discipline. Do I just drop all of the rules and limitations because he is sick ( a course the grandparents would advocate), or do I enforce them with an allowance for the extraordinary circumstances?I have been following the latter course because when Rohan's life is back to normal, I don't want him to be an out of control child who doesn't know the limits. But I ask myself, is it fair to punish a kid who is going through so much already? Walking the tightrope is a tough gig, and I feel myself losing balance.

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