It’s been a little over two weeks since we’ve come home. Maya has been ecstatic, as have we all. The past six months have been extraordinary in unanticipated ways. Perhaps it’s more a commentary on me than anything else. Millions of little voices in my head are swirling aroud the recent events to steep them as palatable memories. I am still trying togrok them. These events have already had a strong influence on my outlook already. I suspect it will have additional influence in my life still to come.
To sweep all these ideas into a coherent theme would be to say that we are … not what we appear to be. To state that we are simple beings made of “dirt” is to miss the essence of who we are. Would anyone call a Renoir or Picasso but a collection of oil pigments? Of course, we are animals on an offshoot arm of a nondescript spiral galaxy. But to simply see us as a gooey mess composed of mostly water, amino acids and some trace elements is far from who we are. There are those of us who try really hard to be no more than a gooey mess, but even then, we have the habbit of regularly overcoming our gooeyness. For example, overcoming addictions or turning the other cheek, say from a holocaust survivor.
Although we may be made of “dirt” and be hopeless beyond imaginations, We are giants. The universe has conspired for 14 billion years to create something that can only be seen as an utter marvel beyond words. Or to put it in another way, the simple fact of existence, against all odds that could have extinguished us, makes us extraordinary. This remarkable lesson was taught to me by Maya.
For the past four years, both Indira and I were thrown in the chaos that is pediatric cancer. Dealing with Maya’s illness has been the most difficult event that we have endured. The complexity and the dimensions associated with pediatric cancer was not something which we expected nor was it something which one could prepare for. Simply put, all we could do was hang on for dear life; Maya’s life and so we did!
There were times when Indira and I both fell apart completely, although thankfully, not at the same time. How does one look after a severely sick child when just getting out of bed takes a herculian effort? How does one make sense of the disease or the therapy? How does one make decisions on which therapy to try next when the main stream therapy failed? Why can’t the doctors fix our daughter? Why a second cancer, as if one was not severe enough? How does one deal with the familiar stresses? Work stresses? Financial stresses? All these stresses and more were being piled on regularly, while we saw our friends falling around us. What a nightmare. And if that was not enough, Maya had complications after complications and set back after set back. How do we keep Maya alive?
K: “How are you Maya?”
M: “I’m good dad-dee”.
These words were the begining sentence in many lessons for me. Even when things were tough, even when we thought that we were finally at the end, when hope started to fade, Maya always answered back that she was good. This shocking fortitude from a little girl has always surprised me. She inherently understood how precious life is. Indeed, it is precious. It is so precious that all the pain and suffering she had had in her very short life was worth it. It is so precious that the long term damages, such as her hearing and infertility and organ damages, and …, and… and are worth it. The damages never got to Maya, the person, a little girl who loved her life, who constantly insisted on engaging the world.
All the possibilities available for Maya are still possibilities for us and for Maya. Yes it was worth it. And when we had put her through so much, and cost her so much, shall we waste them away? Should we indulge in anger? Should we lament the losses? Should we squable over how the doctors could have saved this or that? You bet your life we won’t! Every scar that shows on her body is the reminant of a resolve that changed an almost certain outcome of a very sick child. If these scars invoke an emotional response in anyone, let it be the that of wonder, inspiration and amazement. At the end of the day, it has not taken away from that which is Maya. There were days when these scars used to make me sad, helpless,, angry, out of control. Why are they doing this to my precious precious daughter? Not anymore, not today. Although we will never know what is in store for us tomorrow, everything that we’ve paid for with despair, anguish, horror, endless nights of worries were worth it. The cost was worth it because Maya can walk to Yogurties, Maya is now a dog owner, and Maya went to see the movies that she so wanted to see. And that is enough. Every moment hence forth is a gift to be treasured. Every moment we have with Maya was the result of a slugfest with cancer. And it took miracles to get us here.
Maya is a giant and she opened my eyes with those simple words. “I am good Dad-dee” Four years old… and a meistro in her own right. Some fours years later still, with countless scars, with tubes still coming out of her body, recovering from the devastating effects of chemo, Maya still has twinkles in her eyes. She is learning to walk again, happily. She is well and she has her life back. Maya is a giant not only because she has faced unbelievable challenges and came through on the other side, but because she maintained her “self”, who can laugh, love, and carry on with her life!
K: “How are you Pookie-doo?”
M: “I’m good dad-dee”.
She says that with a twinkle in her eyes. She never lost it, although for a time recently, it did “go under”. It didn’t take long for me to figure out that what I saw in Maya was not particular to Maya, but rather, it is something that is inherent in who We are. It is not good enough merely to get through an ordeal. Anyone can do that as time will push us forwards. Regardless of the fact that one may have endured a devestating trauma of sort, and one may coddle the trauma for a period of time, when the time passes and the pain stops, it is necessary to regain our humanity, compassion, love, inspiration, our joi de vivre. This resilience is what makes us human, what makes us giants. I learned that from an eight year old child.
Even as we live in an ever isolating world, we can never forget that what makes us Human, what gives meaning in our lives, are not the things that we surround ourselves with. Rather, it’s being able to stand “naked” and offer ourselves to each other in however small an act it might be. At times, even a minor act of kindess such as holding someone’s hand in their need could be a paramount undertaking. For example, could you offer your hand to those who oppressed you? But it is exactly such an act that gives us the ultimate strength and the unbelievable sense of lightness of being.
In these past few months, I was overwhelmed by the support we’ve received. Even though we live in an impersonal world where it is so easy to lose track of our humanity, we found ourselves on the receiving end of love and support. At times, it’s been hard to be on the receiving end. Silly pride. We’ve been surprised, humbled, honoured… Our faith in humanity has never been stronger. We also hope that you, our friends, family and community, were given the opportunity to exercise your humanity, your compassion and your faith. Of course, not for a moment would we consider that we are free from debt. There is a mountain of debt which we are all too happy to spend the rest of our lives repaying back.
Thank you, friends, teachers, principals, neighbors, colleagues. You’ve really made a difference in our lives. We hope to live fulfilled and in gratitude for our precious precious lives. Thank you for this day. Today, we are thankful for the joy that is Maya. What a gift!