Wednesday, September 16, 2009

January 15, 2009 Subject: thoughtful reflection….

January 15, 2009
Subject: thoughtful reflection…..

This is one of those halting photographs that was unintended but took our breath away once we loaded it on the computer. Aria was in the living room watching Doc put a hat on our snowman when he saw her and snapped this photo with his phone. He never expected to capture his reflection as a ghostly background to her image. This photograph mirrors with such truth their relationship and unique connection. Aria’s thoughtfulness and intensity is brilliantly displayed here and I think we all gain some insight into the simple beauty of this old soul.

Allow me to shift gears now and tell you a story.
A few days ago I was driving along on a wet sandy highway. The snow had been melting en-masse for days saturating everything with gritty grime that looked and felt noxious to the eyes. A semi-truck sped past me spraying me with highway muck that completely obscured my view for a moment. It was shocking and yet oddly familiar. Automatically I turned on the windshield wipers and sighed with relief. Doc had changed the blades for me creating neat clean swipes that enabled me to see better than ever. I found the whole thing rather exhilarating and refreshing. I remember thinking, "You know, if I had to describe this year in a sentence or two, this is exactly how I would describe it." It has been a gritty, dirty, grimy, scary, obscured, powerful, mess of a year that sped up from behind covering what I once knew. The year's end, however, finds me feeling strangely refreshed, wide-eyed, cleansed, quiet, lighter and full of perspective that I would never have had had it not been for the blades of Life taking gentle swipes at my old ways, clearing my view.

One of the things I think is important to write about is a question that I've carried with me for the last year in the hopes of finding its answer. I remember in the first few days after Aria's diagnosis while she was still in the hospital and we were reeling, hearing things like,
"It changes you."
"This kind of thing sure does give you a greater sense of appreciation."
"It makes you never take a moment for granted."

I’ve carried with me since then, "What is 'IT' exactly?"
Is it a diagnosis of cancer? Is it tragedy? Is it the realization that life, as one knows it, can come to a grinding halt at a moment's notice? What is IT?

What is IT that makes one more grateful and appreciative and present? Is it fear? Is it guilt? Is it shame for having wasted moments? Is it a new sense of purity? Is it coming closer to the Divine?

I remember hearing these comments and nodding in agreement but feeling empty. I agreed because it sounded good and even right but I was nevertheless left questioning and desiring more. I've spent this year searching and this is what I've discovered.

By far the most tangible and glaring realization on my path to discovering IT has been that each life is unique and precious regardless of how it is packaged in the many disguises that try to separate, distinguish and oddly enough compartmentalize and group us. Race, religion, political views, gender, age, and so forth are such superficial defining points despite one's deepest convictions.

I haven't met a single family who isn't exactly like us; scared to death about losing their child whom they love more than anything. That, folks, is all that matters in this kind of circumstance. Sure, there are many things that make us different; economics, education, religion, world view and the like but none of that amounts to much when confronted with the reality that Life ends in ways that shatter the illusion of "how it ought to be." There is no fair way or right way or just way. There simply IS. Spending a year with dozens of families dealing with the consequence of 'what is' has taught me that we are more similar than different.

January 15, 2008 will always be the day that Life and all of it's masking layers was peeled away leaving me with only a core. I learned that the core I call myself was skimpy and a little pathetic but solid. I learned that I'd have to discover how to continue on in spite of feeling perpetually cold, raw, vulnerable and exposed.

I kept reading things discussing issues of attachment and illusion. Some of it makes sense and some still does not. What seems clear to me now is that IT, my friends, is an all-encompassing illusion and a powerful one at that. IT is all that I mentioned and more. It is tragedy. It is cancer. It is life-threatening illness. It is fear. It is guilt. It is emptiness. It is the sense of fairness. It is disappointment. It is also goodness. It is beauty. It is peace. It is joy. IT is everything we know now and believe now that is suddenly shattered, pulverized, and obliterated beyond our reckoning, forcing us to examine everything we know and believe. For me, 'IT' was always something that happened to other people. IT wasn't anything I could claim as my own or so I thought. I often felt a sense of tragedy and loss when observing from afar and perhaps I was affected enough to change a little but nothing compared to the force of IT happening directly to us. What's worse is IT didn't happen to me. IT happened to my daughter and to this day that seems more harsh and brutal because she's so young and so innocent, which instantly stirs the attachment to the illusion that 'there is a certain just order to things.' Up until a year ago IT was a philosophical debate I had with myself. IT was a reminder to appreciate Life and know that it was gift. IT was a nagging voice that filled me with guilt and guilt's real truth, self-loathing, whenever I faltered. IT was a slap in the face to take notice that everyone everywhere suffers for all manner of reasons. IT was a soothing voice telling me that I wasn’t alone.

I know this is esoteric and perhaps even strange but stay me with if you will. You see, I'm learning that IT, that is, how I defined my life before Aria's leukemia was a life with little crisis and real stress. My life had little suffering and real hardship. My view was positive, joyful, hopeful, blissed-out and serene. Beauty was a real occupation of mine wanting to create a beautiful home filled with fresh beautiful food surrounded by beautiful natural things and gardens. A year ago that changed. Suddenly my life was filled with worry, anxiety, fear, death, illness, medication, hospitalizations, clinic appointments, professionals I never knew existed and a journey whose end was completely obscured to me. IT became dark for me. You may recall the cave I journeyed through. You may remember the dark menacing solitary climb I described. I was sad and scared more than all of my years combined. But Life is funny and I was often given jolts of the beauty I once knew. I was revived by friendship and supported from unexpected and welcomed places. I was refreshed and empowered by the confidence and experience of others. I was liberated through the process of 'letting go.' I was freezing cold and vulnerable and yet the greatest surprise was the strength and warmth I gained standing there so utterly exposed. The more I opened up, the more I realized what needed opening. The more I discovered and learned about my process the more layers I began to peel away.

IT is uninvited change that humbles us in our powerlessness. IT is a force, a situation, a circumstance, a set of happenings and so much more that has been an extraordinary teacher. IT has made me more appreciative. IT has changed me. IT has shown me what it means to take things for granted and why that is sometimes a good thing. But more interesting than any of that is defining what I appreciate more now than I did before and see the specifics of life that are meaningful while dismissing the many distractions that do nothing for my sense of spirit.

As I mentioned before, I appreciate with sincerity that we are the same. We are one. We are connected despite our differences. The innocence of Aria and that of the dozens of children I have met has made that realization crystal clear. I appreciate how easy it is to be consumed and driven by what others dictate as important. Sometimes this isn't a bad thing but I'm learning to examine that more closely now. I appreciate that we are inundated with fear, scare tactics, misleading information and untruths. What motivates this behavior is no longer welcomed in my life even for entertainment purposes, for I have known real fear. I have faced real threats. I know the power of information and I have seen truth in the eyes of a mother whose child has died. What often gets pushed aside in the bizarre attempts of keeping people estranged from one another for all kinds of reasons is the genuine goodness of people. I appreciate so keenly now that strangers are just friends waiting to happen in most cases. People really do want to do good things and this experience has shown me that again and again and again. I appreciate with great clarity that letting go is simply a vehicle for welcoming a new. I appreciate that my darkness won't last and new light will shed itself upon me once again. I appreciate fully that life is about finding the balance within dichotomy because no singularity exists forever.

We cannot always enjoy happiness while denying the lessons of anger and sadness. Likewise, we cannot endure always in a place of sorrow for do to so denies us noticing that joy exists in the smallest of. We cannot always be hopeful because to do so denies us the lessons of doubt. We cannot always remain doubtful because doing so denies us the power of hope. The list is endless. This used to be something I appreciated intellectually, but now I appreciate it as a blending of what I know and what I feel. It is becoming a way of life.

I have come to appreciate in a different way my need for humility. It is my humility that keeps me open. It is my humility that empowers me when I'm most vulnerable. What I have learned is to pay attention to those things that before I would have desperately tried to dismiss; those voices that berate me and give me a hard time constantly challenging my mood. Just when I want to sink in self- pity and roll around in it like a pig in a mud puddle, I hear a voice that tells me to snap out of it. Sometimes I really hate that voice but I'm learning to listen and realize the folly of my attempts to stay in a place that doesn't welcome the change waiting just ahead. I appreciate more deeply that my limitations and fumbles aren't negative reflections of myself or sour projections of who I wish to be. Instead, my humility is teaching me that they are companions, guides and mentors continuing to instruct me and show me the way. I appreciate that I no longer need to dismiss those aspects of myself I don't particularly like. In fact, it is through the process of admitting them and accepting that they exist in me that affords me the opportunity and the sanctuary to transcend them. To deny myself a relationship with those things that cause me to roll my eyes, groan and shudder is what keeps me mired in their strength. I appreciate I no longer need to do that.

I appreciate the fragility of all life. I appreciate that the human spirit is infinite. I appreciate that I'm constantly defining and re-defining what 'God' means to me and I appreciate deeply that I don't know. I appreciate the power of silence. I appreciate pause. I appreciate curiosity and endless learning. I appreciate that growth is only achieved that way. I appreciate those things I can control and I'm learning to appreciate those things I can't. I appreciate the lesson I've learned that I can't control much and I appreciate even more the power of trust this has shown me.

I appreciate that I hate that this happened to Aria. I hate every single minute of it! I hate that I've learned what I've learned and how I've had to go about learning it. I appreciate that I hate that I agree with Anthony de Mello's idea that "real growth is only achieved through pain." I appreciate that I still wish to go back, that I'm hanging on to what I once knew although they are but shreds now. I'll let them go eventually and one day notice how they have re-woven themselves into my life. I appreciate the tapestry of my life and its many textures and color. I care about it deeply.

Through all of this appreciation, I have changed. My perspective has changed and I dare say that none it is particularly bad nor is it particularly great. It simply is. I suppose the change I embrace quite dearly is that change is the driving force of 'what is.' I'm no longer spending energy resisting change. I suppose I may be reluctant, hesitant, and even a little wary but I've learned that it is better not to resist. I've learned that my fear of change is a lack of information and I've come to celebrate my assertion in seeking it.

As I remember driving along the highway just a few days ago, I have this sense that I am the windshield that has just been sprayed with unwelcomed gritty grime that is a little unnerving but as it is swept away I realize the clarity of my view. I'm convinced I would never have noticed the grit and grime for what it is nor would I have noticed the relief that comes with truly seeing. I can't say that I'm thankful for this experience. I'm not. I haven't befriended this anguish but I haven't dismissed either. It is simply a constant companion and I've accepted its presence. The foe that is IT, the attachment I still have about death, lingers but it is so much less menacing, angry and heavy. Rather, it is much more like a foggy mist that is hard to grasp yet sensed all over. It is oppressive and oddly pleasant. It is seductive and enticing with a fearsome hold, but I've noticed that when the fog lifts, the solace I experience gazing upon the big blue sky is beyond words. The IT that is my relief and calm I know is more like the clouds capable of infinite display. I've come to appreciate with a full heart that this is Life and the flexibility required is great.

The core I call myself is still skimpy and a little pathetic but I think it is even more solid and that's good enough for me. I know I can take the swipes of the blades of Life. I know that "Come what May" I will continue on. I can. I do and I will....~j

Aria and January 2009

This is one of my all-time favorite pictures!

This is our view from the kitchen window.

This is what I see when the sun rises!

January 13, 2009

Subject: Aria and January 2009

Our year anniversary is just 2 days away and it is very real and raw to us now. At different times over the past few days Doc and I have been teary and emotional talking about it. As we are remembering we’re shaking our heads. It is a continuation of suspended disbelief. It is still hard to acknowledge that Aria has leukemia and all that that means and at the same time it has become such a part of our normal that it's impossible not to acknowledge it. I have many thoughts about this past year that I'll share with you soon enough but suffice it to say that we continue to be well.

Aria continues to feel terrific. She is as healthy and as vibrant as ever. It is sometimes easy to forget and, my, it is tempting too. The fact that she is doing so well is "all relative" as Doc would say. Aria had a lab check on January 5th and FINALLY her counts are where we want them at 1519. This is right in the target range so we are keeping her at her current med levels and will check her counts again on the 19th. In a week Aria will go back to clinic to have a spinal tap with methotrexate injected directly into her spinal fluid. This, as you know, will continue to happen every 3 months. It is hard to believe that a year ago she was having them once a week! I find it incredible to consider having spinal taps every 3 months a wonderful change. Indeed it is, but it remains a horrific reminder of the intensity of her disease.

Aria has returned to school after a month long hiatus, which was part holiday and part illness related. We, as a family, are finally cold, cough and sniffle free after what seems like forever. I am enjoying this time of health and energy. Even though we've been socked-in with dense fog obscuring my view, I feel light and sunny. I am rejoicing in that and savoring every single moment of it.

As I look to our year anniversary, I notice that my shoulders are relaxed. I am creating art again. I'm planning the gardens. I'm welcoming back things I had to let gp. It is an incredible feeling and I am grateful and very humbled by it.

With that I'll leave you with the line of the day from none other than Aria. We were playing 'go fish' recently and just before she began counting her cards she said, "Hey Mama, would you mind shoveling my cards for me?" I think the fact that we have had over 70 inches of snow has had quite an influence. Don't you? ~j