To be deserving

October 19, 2008
Subject: To be deserving

I've been thinking a great deal about what it means to 'deserve' something. With respect to people, the idea of 'deservedness' elicits a great deal of caution in me. There is an inescapable ring of entitlement as its companion that I abhor. I suppose the concept brings me back to the idea of 'duality' once again. Where there are positives and negatives; fair and unfair; good and bad, deserving and undeserving, light and dark, etc. As part of the human experience I think we are destined to sample the extremes of duality and I imagine that with maturity comes a settling-- a balance of sorts with these dualities no longer defining polar perspectives. It is my hope to reach a point in my development where the need for duality no longer exists.

When Aria was in the hospital earlier in the month, I came across a woman I've met a few times. I like her great deal. She has a certain lightness that is both genuine and refreshing. Her young daughter also has leukemia but it is of a high-risk kind and the fact that her daughter is still alive and doing really well is, in itself, a miracle. They were in the hospital for virtually the same reason we were. This mother was at the nurses' station looking through DVD choices that she could borrow and take to her room. We talked about where we were in our phases of treatment and how the girls were doing. We talked about those things that challenge us and make us question. We were connecting as mothers of children with cancer, as women and as growing friends. It was a warm being in her space.

She asked me if we were planning to participate in "Make-A-Wish". This was rather ironic because I had just recently decided that it would be something we would like to pursue and contacted them. She asked if we were planning to go to Disney World because she and her family are planning to go sometime next year. They are absolutely thrilled about it. She told me stories she had heard about the Disney World experience through Make-A-Wish and what she described sounded truly magical. I told her that our kids don't know that Disney is an actual 'world' and that, no, we would not be doing anything like that. I told her I wanted to do something that resonated with Aria's soul and that something is her love of horses; her true passion for them. I mentioned that we were probably going to go to some kind of Dude Ranch where Aria could ride horses and be around horses to her heart's content. I also told her about my reservations about participating in this kind of thing. I told her that when I contacted Make-A-Wish I needed to be certain that our participation wouldn't slight someone else, who may not have the same kind of resources that we have.

I'll tell you that the representative I spoke with was completely reassuring and lovely. I didn't expect to burst into tears while talking with her but I did. Her kindness and her reassurance was the key to unlock my emotions in that moment and it caught me off guard. I was telling this mother about my experience and as she nodded in agreement, she said something to me that I didn't know how to respond to. She said, "You know with everything we're going through and the kids have to go through, we deserve this." She believes it too. I don't think she believes it in an entitled kind of way but it definitely struck a chord in me that she believes it in an "it's only fair" kind of way. We're dealing with something so negative and so horrible that surely we deserve something positive and uplifting. I had nothing to say to her in that moment. I simply listened. It sounds so justified and reasonable. It sounds good and makes sense, sort of. For some reason, I visualized a sugar coating covering a bitter pill. I swallowed hard and was unmoved.

I've been listening and processing ever since with thoughts percolating drip by drip formulating what I'm writing to you now. Although I understand her perspective completely and I've heard it a number of times from different people, including the woman at Make-A-Wish, I remain unconvinced. I don't believe in the least that my family, including Aria, deserves a top-notch trip to some incredible horse destination. I don't believe this as much as I don't believe Aria deserves to have leukemia in the first place. This is duality at its best and this is, to my mind anyway, a perfect illustration of its folly. Neither example of deservedness has any basis in truth. Aria's leukemia is not Karma. It is not the result of her sins or the sins of her parents. In fact, that argument is so utterly absurd that I not only want to spit fire, I want to laugh until my sides split! I don't believe this is her cross. I don't believe this is God's doing with His point and purpose remaining a mystery until death. I think it is evident that I don't believe God is fashioned this way. Aria in no way deserves the fate befallen her. It simply is. But as simple as that concept is for me to accept, I understand that it poses a mighty challenge to others and their belief systems, because it doesn't require an explanation nor does it ask me to point a finger of blame. There are millions and millions of fates crippling the lives of others that are pointless at best. Our situation isn't unique on the grand scale of what it means to be human. She and we are living the human experience just like everybody else. We have beauty, brilliance and magic tangled with sorrow, fear, tragedy and loss.

Therefore the real question and point of reflection for me isn't whether or not this, i.e. a Make-A-Wish, is something we deserve. Rather, I'm pondering what to do about it. Now that I recognize and firmly believe we don't 'deserve' a Make-A-Wish, I'm still going to pursue it but here is where my conscience lies. I recognize that we live in an extremely privileged society and I will continue expressing and showing my gratitude for that fact. I recognize that a trip like this will most definitely bring our family some incredible moments that we'll remember forever and I will document them in great detail and share them with anyone and everyone. My hope is to advocate and contribute to this organization whose soul purpose is to bring magic to children and their families during excruciatingly difficult times. Wouldn't it be incredible if this took on a global scope? I recognize that with privilege comes a responsibility to pay attention to my extended global family that is far less privileged and whose suffering is great indeed. We all share this human experience and what we do, say, and think has a ripple effect that must find a settled place somewhere in the balance of positives and negatives. I recognize that my actions, my thoughts and my attitudes must find that balance within duality so that I walk through life with a gentle step and a heart and mind wide open.

It is with that thought that I realize that as human beings what I believe we deserve is nothing more than what comes with offering the best of ourselves. ~j