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

Sunday, September 13, 2009

Aria has a cold

December 13, 2008
Subject: Aria’s got a cold

It came COMPLETELY out of nowhere yesterday. We went to the Christmas Party at the hospital. You know, the place where pristine health is sort of guaranteed. I never would have gone had Aria shown any indication that she was getting sick. She didn't show any sign whatsoever until we were leaving and I was buckling her in her car seat. She was asking is we could go to McDonald's and I heard the stuffiness in her voice. "Uh-oh!" I groaned to myself. Later that day she complained of a sore throat. I watched her all afternoon and evening. She was fine with the exception of being a little tired and stuffy. She's been back on her chemo for a week so clearly her immune system is being knocked around again.

I woke up at 2am last night worrying and wondering. Doc was leaving in a few hours for Kansas to attend the funeral of his aunt. He'll be back late Monday night. I was imagining what to do if Aria woke up with a fever. I imagined having the hospital bag ready; extra clothes, mittens, hats and gloves because we're in the middle of our first big snowstorm. It's beautiful by the way! I love it..really I do! I thought about snacks, movies, pillows, blankets, a port-a-crib for Rianna in case we all have to sleep over. I was thinking about where Reo would sleep; couch or chair. I was feeling very tired and at the same time could not for the life of me get back to sleep. Hmmmm I wonder why? I was thinking about the words of Pema Chodrin I had just read. She was talking about being able to find joy if only one allows themselves the permission to see it. Her words and those that she quoted from Thich Nhat Hanh's "Walking Meditation" resonated very deeply with me. I knew I would be ok. I still got up and checked on Aria though. It was 3 am and thankfully she wasn't feverish! I went back to bed and started to fall deeply asleep when Doc woke up to say goodbye as he left to catch his place. It was around 4 30 and I got up shortly after that. I'm ok.

Aria slept soundly and in fact slept in. She felt warm when I checked on her and when she woke up around 7 30 I took her temperature. It was 99.0. Not a fever but also warmer than her usual so I'll be monitoring her very closely today. She is definitely sick with a stuffy nose and cough.

That's the thing, guys... I was so thrilled to go to this party and we had a ball! The kids got to visit the real Santa, who was extraordinary. He and his elves gave the kids wonderful presents. We visited with some great friends. It was festive and fun and just a whopping dose of joy. We all needed it. It was shattering to get into the car and listen to Aria and know that she caught some kind of bug probably in school that's been brewing for a few days and decided to pop out just after this party. I couldn't have known that it was happening but I still feel bad that she may have exposed some other kids to this. It is not overly dramatic to say that it is a wretched a feeling.

Some of the words I read last night keep entering my mind this morning. I'm paraphrasing because I don't have the book in front of me but it went something like this; “the greatest obstacle to joy is resentment. I think that's true and right now I have to admit that I resent Aria's leukemia. It is a horrible thing to admit but there it is. I resent it. Now that I've identified that and I've admitted to you, it no longer owns me so I can work on letting it go and in its place welcome that joy that defines Aria, Reo, Rianna, Doc and I.

I'm going to go and face this gorgeous snowy day. I have a smile on my face that isn't a mask to the concerns I have but a smile that reflects my confidence that everything will be fine. I do, however, ask that you keep us close once again. ~j

December 14, 2008
Subject: Aria is MUCH better!

Phew! Can you hear the relief from over here? Yesterday, Aria steadily improved throughout the day. She still has a little sniffle and a little cough but no fever. The kids slept with me in the big bed last night since Doc is in Kansas and I felt her cheeks all night long. She stayed nice and cool! She is in marvelous spirits this morning and we are planning a fun day around here. It is 0Foutside right now so I don't have any plans to leave the house! We'll probably make some cookies. I really want to make a gingerbread house with the kids this year too. Who knows maybe we'll get wild and crazy and make the dough for that!!!

Thank you for all your thoughts, prayers and good wishes! I am so very grateful!! Much love and warmth (literally!) to you all!! ~j

Christmas Trees

This is one of our Ponderosa Pines that stands like a giant Christmas Tree in the snow. I love this tree!

December 10, 2008
Subject: Christmas Trees

When I saw her standing at the nurse's station as I was leaving for the day, I was stunned. I wondered whether she was visiting, thinking that her daughter had already died as expected. I also wondered if by some miracle her daughter was still alive and they were on the inpatient unit enjoying some borrowed time. I couldn't wait to find out what was going on with her. As I walked out into the hallway, Reo, eager to leave, was pestering me. "Come oN mOm!" he moaned. Her back was to me but she turned as I approached and a warm smile filled her face. It was a crossroads moment; our paths intersecting gently and I wanted to savor every bit. I said,
"I'm so happy to see you and I'm a little surprised too. How are you?"
She shrugged with the 'whad-a-ya-gonna-do?'attitude I'm beginning to understand so well. She told me that they came back for treatment because her daughter had indeed surpassed everyone's expectations and there was a sparkle in her eye when she said it, but it vanished almost immediately when she shook her head 'no' and said with an expression that something foul was in the air, "it'll just be the next couple of days." I stood there without anything to say because although I didn't want to believe what I was hearing, I knew and understood her with great clarity. The moment was about to become incredibly heavy with my surroundings disappearing completely, but kids have a magical way of shattering such moments. It was here that Rianna ran into a vacant hospital room and began to dance and play. I scurried after her immediately because I don't want her to think that she can go into any room she pleases at any time the urge arises. I chased my little one down and when I looked back to see her, she was gone. I think in the process of fetching Rianna and listening to Reo whine, I was able to say a back-handed sort of "bye!" but I can't remember. This was a dangling interaction and departure so it isn't a wonder that she occupied my mind the entire evening.

I came home and wrote about them. I was deceiving myself and you with what I knew. I knew she and her daughter were not going home. I knew, "It's just gonna be a couple of days" meant death was knocking on their door. It is strange how a little bit of denial and hope for the miraculous can cloud the reality before one's very eyes. I was devastated for them to say the least and at the same time I was curious and peaceful. I wasn't scared. I wasn't anxious and I wasn't at all thinking about Aria. It was so clear to me that what was happening to them had absolutely nothing to do with the path that I am currently traveling. This doesn't mean that it couldn't. It only means that right now I'm not any where near that path. The relief in that realization strengthened me somehow. It filled me with a curiosity that I spent hours considering. The last thing I wanted to do was intrude. I don't know her very well. We've had only a handful of conversations so I wanted to make certain that everything I said and everything I did was from a place of sincerity, presence and truth. I didn't want a visit with her to be about me. I didn't want to step into their world to satisfy a curiosity that was a based on needing reassurance, which would inhibit me from being fully present to them. I wanted to leave my life at the door and step into their life as they faced life's end for their daughter.

There is an overwhelming desire/need to do something. It is a compelling motivation in moments of true helplessness. I wanted to do something to ease her pain knowing full well that there isn't anything. I wanted to give her something that was meaningful to me that I hoped would be meaningful to her. I thought about it briefly and knew. I collect prisms and I give them away. I love the rainbows they cast. They are enchanting and fill me with positive light. I knew I had one left and I knew it no longer belonged to me. I wrapped it up and wrote a short note that included our address and email and went to bed thinking about them. It was so tempting to want to spout off a childish prayer, “Dear God, PLEASE do one of your miracles! Please spare this child and her family the anguish that is consuming them. Please God, hear my prayer!" I burst out laughing when I listened to those words ring in my head and I told myself to be silent and to listen instead. I heard, "Thy will be done." I love that part of the Lord's prayer. It is powerful and true. I listened some more. Nothing came. I listened. I quieted my mind. I fell asleep and when I awoke St. Francis was with me. "Be an instrument of Peace" was the first thing I heard when I woke up. Suddenly I was really tearful and insecure. I know how to be a 'tour-de-force" type personality but I'm not always very refined when it comes to being quiet and peaceful with others and so I knew I needed some help. Mother Theresa's face kept entering my mind and her presence with me helped a great deal.

I had written that I wanted to visit this family and that I would know what to do and I would know if my presence there was meant to be. I trusted completely in the unfolding of this day, but I knew that I needed others to help me see the way. I first mentioned my intention to their nurse, who I adore completely. She said that she would ask the family how they felt about a visit me from and if there was a particular time in general that would be ok. I let it go at that and enjoyed my day as it was meant to be. A few hours later I needed to go to the Ronald McDonald room for one reason or another; mostly it was to get out of the room and have a walk. I saw that Mary Anne's door was open. She's the director for the Candlelighter's chapter here in Spokane. I've written about her more than once. I knew she was a well of resource and advice. I went into her office. This was a first for me. I had never been much beyond the threshold of her door but today I went in and took notice.

She has 2 bulletin boards in her office. One is oversized and has 2 headings; "Siblings" and "Survivors". It was plastered with photographs of smiling children. It certainly brought a smile to my face until I noticed her picture. She has such a sweet face. Her eyes are slightly slanted and her face is round. She has a great deal of curiosity about her and in this picture she is full of life. It is so hard to believe that just down the other hall, she's dying. She's been a survivor for 5 years now and it saddened me that she won't be going on to live a longer life. I touched her picture and looked at Mary Anne. We nodded together in silence. I looked on the other side of the room and noticed the second bulletin board, which is significantly smaller in size. It is titled "Angels" and there are several photographs there. Half of the children on there were kids that I knew only peripherally. I had seen them once or twice in clinic. I had wondered about them from time to time. It was really hard to look at their faces and to know they are no longer here. The urge to keep shaking my head 'no' was almost uncontrollable. I have so little personal experience with death. I can count on one hand the number of dead people I've actually looked at. I've certainly never experienced the process of a dying loved one and I can't think of a child that has been really close to me, personally, who has died. It was crippling to stand there looking at their innocent and beautiful faces and to know that in just a matter of days her picture would be there too.

Just as I was about to divert my gaze I saw the picture of the little boy whose funeral I attended in June. I paused and remembered him and sent a thought to his family. Then I looked just a few pictures away and in the corner I saw the face of a little boy and I gasped! I had written about him months ago. His parents had received dreaded news one day in the clinic and I was in the waiting area listening to every single word his mother was saying while on her cell phone. You may remember that I couldn't pull myself away and despite the fact that I felt like a wretch for eaves-dropping, I couldn't stop myself. I wanted to hear her voice and her words. I wanted to have some idea of her experience. I wanted to take in every second of it for some reason. I remember that within a matter of days, they were heading to Seattle for what I assume were some last-ditch experimental efforts. It was grim. I remember seeing him, however, a month or 2 later in the clinic. I was amazed! He was in a wheelchair and rather unresponsive, but he was alive and he looked great. I never saw him again until I stood before his picture. Mary Anne told me that he had died 2 weeks ago. It was such a punch in the gut. I took a deep breath.

It's here that I'd love to be able to say something inspirational, something beautiful about the transition from life to death. I'd love to be able to impart some wisdom to you but I'm coming up horribly short. The faces of these children represent the many faces of a brutal disease that they must endure for reasons that are beyond my reckoning. I'll never understand it. It will always remain a mystery to me. Although I'm sometimes accepting of this Mystery, I'm not always and this was one of those moments. I was staring face to face with a formidable foe and I was unable to move.

I looked up for moment and saw two pictures that were slightly removed from the rest. They were unfamiliar to me and the photographs were older. I asked Mary Anne who they were. "That's my son and my daughter," she said. I turned to her and looked deeply. I shook my head 'no' and said nothing. My expression must have been one of question, wonderment, bewilderment, exasperation, anger, futility and the like. She said, "Yeah, I couldn't have said it better myself!" We both laughed hysterically. What on earth is there to say?

I explained to her my situation. I told her that I wanted to visit this family but didn't want to intrude. I told her that I was curious but didn't want my curiosity to be akin to wanting to see some kind of old time freak-show. I wanted to check in with her and make sure my intentions were pure. She gave me some marvelous advice. She told me to follow my instincts and my heart. She told me that when her children were dying, she loved the attention. She loved people coming to visit. She loved the sense of community and support. She said that it was a wonderful distraction at times but also incredibly exhausting. She often felt like she had to take care of those feeling sorry for her and for those fearing for themselves. She found herself in a care-taker role a lot of the time and it was tiring. She encouraged me that if a visit was meant to be to keep it brief. I asked her if there were things that people said and did that were really distasteful to her. Obviously, I wanted to avoid doing anything disrespectful at the same time I didn't want to be completely self-conscious. She reminded me that there are no rules and to just follow my heart.

I spent the next few hours in our room. Their nurse had approached me and told me that the mother was thrilled to hear that I wanted to visit. "Julia, she was really very touched and said to come on down any time." I was elated. Aria wanted to take a nap and Rianna needed one too, so I knew that when Doc returned to the hospital later in the afternoon, I would have an opportunity then. In the meantime, Krista came around and brought tea. We had a long, long chat. Krista knows that I process aloud as much as I process through writing. She has a professionally trained listening ear, but she's also a friend. We talked about the nuances of dying--how some people can't even say the word. They can't bring themselves that close even when death is happening before their very eyes to their beloved child. I can't begin to comprehend it and as far as I'm concerned it doesn't matter. It seems like the most horrific free-fall where one let's go all the while trying to grasp onto something as they fall. There are no rules and people cope however they can. It takes my breath away to think about it.

Krista gave me a wonderful perspective. One of the things she said was, "They have these moments...." She was referring to an art project that this little girl had done. She was able to leave imprints of her hands in clay, which was fired and cured so that she could paint and decorate them. "This is a gift she can leave her mother before she goes." Krista said. It is a beautiful and heart-wrenching thought. When I look closer, it is a moment for this child and for everyone who interacts with her that can be cherished in memory and shared with anyone who cares to know. Her spirit lives on this way and that thought brought a smile. She's had many such moments I understand in the last several weeks of gifted time. I'm quite certain that everyone she's encountered recognizes the reality of her shortened life and has learned to share a core moment with her, rich with purity and sincerity.

It is one thing to say we need to live each day this way and to even believe that it's true. It's another thing entirely to pull it off. I'm not sure I believe that we ought to live each day as if it's our last. It sure sounds good and it even satisfies my need to feel guilty once in a while, but I'm not certain it's true to form. I think it is even more simple than that. I'm beginning to see that to just live is enough; being present to every moment, even the petty moments, the ridiculous moments, the serious moments, the joyous moments alike are all very important. To always live as if we're attempting to reach some other way to live seems like a real waste and certainly inhibits us from taking genuine notice. I don't know. I'll have to give it some more thought.

Krista was sober talking with me. She listens so intently and has patience like no one else I know. What I talk to her about are things she hears over and over every single day by one person after the next. She doesn't seem to tire of it and she's always available with a great deal of presence. I have so much respect and admiration for her.

It was mid-afternoon when Doc got back to the hospital with Reo and I decided then to check in with the nurses and see if this was going to be a good time to visit. They assured me that it was and so I made my way down the hall to her room. I was nervous. I didn't know what to expect and at the same time I had these ideas and images in my mind. I imagined walking into a bright room with her sitting up on her neutral colored non-descript hospital bed. I imagined her doing something on her tray like coloring or doing some craft. I imagined a few people in her room sitting here and there trying to find things with which to occupy themself. I imagined having to open the door to her room. I was consciously aware that I wasn't thinking about what I was going to say. I wasn't rehearsing anything. I was breathing deeply and I was thinking about the words 'instrument' and 'peace'.

As odd as this may sound, the walk down the hall to their room was in slow motion and there was definitely this suspended state of reality I was experiencing. I can't explain it more than that. I suppose it is nothing more than facing the impossible. It is impossible to believe that she is dying and less than a year ago when I first met her she was full of life. It is impossible to believe that children in every city, town, state, village, and country across the globe die in all manner of ways on any given day. I could say this about people in general but there is something halting about children who die. I think most people agree that there is something terribly amiss when a life as we expect it to be lived, particularly in it's duration, hasn't been met. It doesn't seem fair. It seems unusually cruel and yet I'm learning that this is the Mystery. It simply is.

Her door was already opened. I stepped through and immediately lost all sense of time. The darkened room was aglow with twinkling lights from a small Christmas tree that was perched on the desk. It cast a warm and welcoming feeling. I saw her mother coming out of the bathroom. She had just showered and although she was dressed, her hair was still tied up in a towel. She greeted me with that warm dazzling smile of hers. There were a few other people in the room, although no one was sitting. There was a calm constant motion all around me. I was exceedingly aware that I hadn't looked at the little girl lying on her hospital bed. She wasn't as I had hoped and imagined. She wasn't awake. She wasn't sitting. She wasn't coloring. I exchanged a few words with her mother and a wonderful embrace and then I went to her bedside and looked intently upon her. It was scary at first. I have to admit that. She didn't look at all like I had remembered her nor did she look much like the little girl whose pictures were taped on the bathroom door. Her head seemed out of proportion with her body somehow. It was large and round and somewhat flattened compared to her thin frame. One of her eyes was slightly open as was her mouth. Her mother assured me that she was sleeping peacefully because of the sedating pain medications she's receiving. I thought she was unconscious and it made me glad to know that she had been sitting up earlier and talking to people. There was no denying it--she was lying there in some Divine process of dying right before my very eyes.

There were more people in the room and her mother took great care to introduce me to everyone. "So and so, this is Julia and her daughter is an inpatient right now. blah blah blah." It was so sweet of her to try to include me in such a way. After about the third such introduction, I could almost see her words trailing into vapor before they reached the other person's ear, who was, naturally and understandably, completely uninterested in meeting me let alone knowing anything about me. "This is Julia and!" gone. It was hilarious to me to see it so clearly and I suddenly became very aware of Mary Anne's words; "I felt like I had to take care of people..." I didn't want to be taken care of and I didn't want her to feel obligated in this way. I gently shook my head no and said, "Thank you but never mind, it's ok." She smiled. We spent a while staring at her daughter and had an incredible conversation.

I asked, "So, what happened? I saw you in October and at that time you were planning to go home." She took a deep breath. I wondered how often she's had to tell the story. I didn't apologize. I breathed with her and calmed my mind as I looked upon her daughter, who was a lot less scary to me now. I know that must sound horrible, because she is a lovely little girl but to see her in this way was new for me and I didn't quite know how to feel. Her mother told me that in October she had already surpassed the 4 - 6 weeks she'd been given back in September. She had received more chemotherapy and was indeed being stabilized to go home and see what happened. When they got home, she was doing great. She felt well and full of life. Everyone was amazed. I think around Thanksgiving time they returned to the clinic so that she could receive platelets and more chemotherapy and go home again for another month or so. Her mother explained that everyone knew that they weren't facing any kind of cure and that it was just a matter of time but they were certainly going to pursue preserving as much time as they could. After this last treatment however, she crashed. She started to get really sick and was admitted. Earlier last week, the family was told that this was it and that they wouldn't be going home. Oh, I can't imagine. No matter how prepared one is cerebrally, the emotional blow must be a kind of hiroshima. Her mother said to me, "You know I think she's always felt that she has to be strong for so many other people who are constantly pulling for her. When she comes here, she can let her guard down and be taken care of. I think, this time, she was done having to fight so hard." She paused allowing her tears to well, "I'm so proud of her. She's my baby and I love her so much. I just don't know what I'm going to do..." I was in tears and I was grateful to be allowed such an intimate glimpse into her world. The whole moment was profoundly touching in ways that extend beyond the scope of words.

She continued, "So, we're just making her comfortable now. She's in horrible, horrible pain since her cancer has now moved into her bones. She's receiving all kinds of pain medication and one of them is highly sedating. But at least she's comfortable." I noticed that she was rubbing her daughter's head incessantly. It made me think of the mother at the wake I went to in June. She couldn't keep her hand off her son's head, rubbing it over and over and over again. I did the same thing as you may recall and I found it so soothing. There's some all-absorbing need to do this. It is unconscious on some level and at the same time it is the very real sense of touch that allows her to feel and to know that life still rests within her daughter. It was a very intimate and beautiful thing to watch.

It was here that I noticed two things. The first was her hospital bed and I commented on it. "Wow! What a fancy bed!" Her mother replied, "I know! It is wonderful. It is an air bed." I'd never seen anything like it. The bed was raised so that the royal blue mattress was about waist high. It looked incredibly comfortable. Her little body was completely encased by pillows and blankets. She looked at ease almost as if she was somewhat melted into the bed. It was so peaceful looking at her now. She had a Christmas tree that was about 8 inches high lit up and resting on one of the pillows. Her mother showed me that it was a night-light that they kept near her so she could look at it. "It kind of gives her one more Christmas," she said.

The other thing I noticed was something about myself that cracked me up. I realized that as a reaction to my fear about looking at her daughter, I was trying to get as close to her (the mother) as possible. I kept moving closer and closer, trying to make some kind of physical contact and she kept taking one more step away from me until she was practically leaning up against the wall. Oh my God! I was horrified. I immediately put myself in check and from then on was acutely aware of simple boundaries such as personal space!

Several more people entered the room and wanted time with this precious little person. The mother and I moved aside and I listened to her tell me what their 5 years have been like. She knows the end is near. She knows she'll be ok but at the same time she cannot imagine life without her daughter. I suppose that reality will simply have to be faced one moment at a time. We talked and cried and hugged for several more minutes and then it was time for me to go. I gave her my little gift and I told her that I would never forget her and as I put my hands over my heart, I told her, "I'll always keep you close." I said a silent good-bye to her daughter lying so still on her bed. It occurred to me as I was walking out the door that she needed to tell her story. I understand that need. There's strength in telling the story over and over again. There's processing and understanding and there's also little room to deny what's happening and so in it's place must be some realization that can not be escaped. I wonder if perhaps this is but a tiny step toward acceptance.

As I was walking down the hall back to Aria's room I had this overwhelming rush come upon me. It was an honor to visit this family at this stage of their journey. To be allowed to witness something so personal, so intimate and so difficult is really hard to put into words despite the many hundreds of words you've read thus far. I also wanted to cry. It is so sad. So, so, so sad! I was just about to allow a few tears when I came upon Aria's room and I could see her through the window. She was being a lion sitting on her regular hospital bed, scratching fleas from behind her ear with her foot. I could see Rianna walking around like a lion, too, snarling and growling more like a monster than a lion though. I burst out laughing and felt so grateful for the Life I have.

I entered Aria's room and into their bizarre safari that included lions, stallions and power rangers! We played for a good long while and since Aria got the green light to go to the playroom, we decided to saddle up and head that way. The playroom is a pretty nice place, that is dominated by it'slibrary of movies. Kids who are inpatient don't want to play much and neither do their siblings. So if ever you have movies hanging around that you aren't watching anymore, please consider donating them to your local hospital. Naturally, the kids couldn't just walk down the short hallway to the playroom. No, not the Laytons! We had to go down there in parade style. Reo led the band as a power ranger, karate kicking, diving and rolling all the way, followed by Aria on all fours as a lion. She paused at the nurse's station to show them her teeth and a big yawn as well as give them a shake of her tail/ butt! You can imagine the smiles and the laughs. Tagging along as the caboose was Rianna, also as a lion/monster. It was thrilling to see so much life in these kids.

Just outside the playroom there was a large Christmas Tree and the mother I had visited a little while earlier was there with a few family members. They were taking a break and looking at the tree. I introduced her to our kids. She was so generous to smile and laugh as she did when watching them. She, of all people, fully appreciated the fact that they are full of life and she understands so well just how fragile Life is. She graciously spent a little time with me on my path and I can't think of a kinder more generous gift than that. We said our good-byes one last time and once again I left to my world and she to hers.

Christmas Trees have additional meaning to me now and for the life of me I can't tell you what that meaning is exactly. It's probably a lot of things, not the least of which began so long ago with how I described Aria's hair falling out; like the gentle cascade of pine needles that one suddenly sees not in the process of falling but rather after they have found a resting place on the ground beneath the tree. The Christmas Trees in her room inviting the Mystery of the season and the Mystery they are now witness to is profoundly affecting. The twinkling lights that give one pause to reflect and to enjoy. The splendor of their color and the majesty of the tree itself is something to revere. To watch this family stand before that huge Christmas Tree on the inpatient ward knowing that their daughter is more than likely going to die before December 25, made very real that Christmas ought to be celebrated on any given day. It really doesn't matter. Does it? The celebration of thoughtful giving-- the idea that one can give of themselves with infinite possibility. The coming together in a way that reminds us of our connection and awakens us from our separations is something deserved of daily consideration.

I see no reason whatsoever for all of the rushing into a funnel that pours itself onto a single day. It is absolutely absurd especially when face to face with someone celebrating their last Holiday. We all know this. For me, that perspective is more than abundantly clear this year. But more than that, as I gaze upon the lights on my Christmas tree and those scattered all over town, and I think about all the dichotomies that have come to define this journey; life and death, light and dark, joy and sorrow, hope and despair, wellness and sickness, abundance and nothingness, clarity and obscurity, I still see such brilliant glory and beauty. I'm surrounded by it all the time and this awareness reminds me of the promise I'm granted each day. As the solstice nears and our shortened days become longer, may the promise find you in celebration of twinkling lights, color, kindness, communion and soul. ~j

December 10, 2008
Subject: An eternal light

I just received word that my little friend died last night around 2 30 am. I'm assured that she was peaceful, pain free and surrounded by family. She was 8 years old.

It is on this day that I celebrate her life and recognize the eternal light she has given me.


Saturday, September 12, 2009

Aria is Coming HOME!!!!

Aria as a Warrior (Kansas 2007)

Aria and Reo running through Joyce's field (Kansas 2007)

Aunt Joyce's pond

Fishing with Dad at Aunt Joyce's pond (Kansas 2007)

December 5, 2008
Subject: Aria is Coming HOME!!!

YaHOOO!!! Yesterday Aria's ANC had dropped to 128 and Dr. Trobaugh really preferred that we stay another day but was willing to let us go home with some antibiotics if we really, really, wanted to. We decided to stay another day. Aria's spirits are high. She's feeling super well and she's full of the dickens. She was getting mighty bored and starting to be a real crank-pot so I'm thrilled that she's coming home. I'll be weaning her from the TV and getting her into some other things, namely writing her letter to Santa!

Speaking of letters...Aria received 28 cards yesterday! My Oh My! It was the most wonderful thing and I thank each of you for sending them! If you happened to send her one today, not to worry, they'll save them and we'll get them the next time we come into clinic, which will more than likely be next week. Really and truly, it meant the world to Aria to receive these cards and not only that but it meant the world to me. I'll never be able to fully express the way they energized me. It helps so much to receive little notes like this from time to time. It is the very thing that I draw from to keep me going. Sometimes my own reserves are so depleted that I can lean upon you to pick up the slack a little so that I can restore myself and continue on. This is so long and drawn out in many ways and it's hard to feel like there's anything 'normal' about it. We haven't had long, periods of time without something to do related to cancer so we' haven’t been able to let our guard down. Instead, we've been on a two week course that has been up and down, here and there, this way and that so it is no wonder that it doesn't seem normal. I can't grasp it. I can't wrap my hands around the process and know that this is the way it's going to be for a while. I can't find anything really tangible yet. In some ways it has been a wonderful lesson in the ‘simple living of day to day.’ Dr. Trobaugh assures me that I will someday in the course of the next 16 months, but she also knows and says, "But then again, maybe not." We laugh about this reality because it’s the only thing apart from crying that we can do. I've learned that I reserve my tears for other things.

I am so very thankful that you heard my call to send cards and that you answered in such an overwhelming way! It isn't easy, despite what you might think; to reach out that way, to be vulnerable, to ask for help, to admit burn-out and boredom. I know it is so obvious but emotionally these are things are typically guarded and protected. When they are revealed, it leaves me feeling cold and a little scared. I'm learning, however, to take that deep breathe, to trust in Love, to reach out honestly and to let others carry the load for a while. It is a humbling experience mixed within a vast array of humbling experiences. This one just happens to be extraordinarily personal. I thank you for you love, your friendship, your consideration, your concern, your prayers and thoughts, your time, your listening ears and reading eyes, your strength, your creativity, your presence, and most of all your willingness to be with me.

I have much more to write about, particularly yesterday. I visited the mother whose daughter is dying down the hall from Aria. I saw her. I talked to her. I hugged her. I cried with her. I touched her daughter. I said good-bye. It was an honor to be there at this stage of their journey. It was very hard and I'm convinced it was absolutely the right thing to do. She and her daughter deserve a separate writing, one where I can sit with my thoughts of only them. I'll be formulating that today and then I'll sit and I'll write.

Until then, I'm tidying up for Aria's arrival home, which should be in the next hour or so! I am so thrilled I can hardly contain myself. My spirit is soaring with Life! ~j

December 9, 2008
Subject: Aria’s counts

I just wanted to send a quick word to let you know that Aria is doing so well. She had a finger poke yesterday 12/8/08 and her ANC was 1024. Just the Friday before it was 228. I think this is just extraordinary. Her hematocrit was 32 and everything else was near normal. I mention her hematocrit not because I really understand it as anything other than a gauge that let's me know how much energy I can expect her to have. Normal is somewhere around 35 and Dr. Trobaugh has said that if she ever had a hematocrit that hovered around 28 as Aria's does so often, she'd never get out of bed! With a hematocrit of 32 Aria is perfectly normal in terms of her energy and spirit. She was able to return to school today and had a wonderful day. She is, unfortunately, dealing with the weaning process of less movie time now that we are home. She is allowed only 1 movie on school days. Reo isn't allowed any television during the week and they are allowed movie time on the weekends. It is a dramatic change from the hospital, so it is no surprise she doesn't like it. Today, she lost her movie privilege altogether because she's beginning to show some spoiled sort of ungrateful,l entitled nonsense that I have next to no tolerance for. I understand completely that she is also only 5 years old, but I tell you, the temptation to indulge this child in her every whim because of what she has to go through is so very enticing. It isn't the right thing to do to my mind and so I don't. She is indulged plenty, but a balance has to be struck and some mighty hard lines and clear boundaries have to be made. I tell you what, sometimes I feel like bitch-mom #1 because I have to lay the law so often but it is what it is. Funny thing about kids, as you all well know, if you can only endure the length of their tantrum, they move on rather quickly. Aria and I had a wonderful afternoon writing her letter to Santa. We played. We snacked. We talked. It was wonderful and I don't think she missed her movie much. She assured me later in the day, "Mom I've worked on my attitude!" I’m very proud of her.

Aria is back on her daily chemotherapy at 1/2 dosing and she is scheduled for another count check on Monday December 15, 2008. That check will determine if we dial up or down her chemo once again. She receives her big gun chemo on December 23, 2008. We're going to a Make-A-Wish Christmas party on Friday. The really wonderful thing about it is that oncology patients are scheduled for the first 2 hours and then all the other kids with various medical conditions can go. The oncology patients are separated because they are so immuno-compromised that anyone in attendance is expected to be in pristine health. I'm thrilled about it. I'm keeping Reo out of school that day so we can go and play and have fun. It will be a nice break for me too. I can let the kids go and play and be watched by someone else! HEAVEN!! Now if only there was a wine bar nearby and a designated driver!

I'll mention that we received still more cards at the clinic on Monday. So many thanks to you all!! Really, I feel completely inspired and re-energized. Thank you! Thank you! Thank you!

Last but not least, I'll mention that we just got word that Doc's beloved Aunt Joyce had a massive stroke today and is now in the hospital in Kansas. We don't know the full extent of her prognosis but I'm afraid the news is grave. Please keep her and Doc's entire family in your thoughts and prayers. The photograph of Aria as a warrior was taken at Aunt Joyce's pond in September of 2007. She is very, very dear to us. ~j

December 3 2008 ER visit

These events really do appear out of nowhere, which is what makes living with the always looming, always lurking presence of them difficult. I suppose I’m getting better at going with the flow of it but I have to say that the constant, weird, and very real threat of something happening that presents in the form of a million pesky little worries, “Is Aria warm today? Does Aria look ok? Aria, are you sniffling and feeling alright? How’s your throat today?” is mind boggling. It would so different if this was happening to me. I’d be able to instantly notice when something felt off. I’d quickly learn to anticipate reactions to drugs and know what to do. I think the anxiety I would have would be different and perhaps even a little less. The fact that this is happening to my daughter and I can’t feel what’s going on inside her body to help me know how to react and act is a challenge.

I can’t help but wonder if you are reading this thinking, “Well of course Julia! Duh! How can you not be worried? Isn’t that called vigilance and being a good mother? Isn’t that what it’s all about—you know, staying one step ahead of the game?” I would agree with those thoughts entirely. What I’m referring to when I question my anxiety is what it means to live in the moment. When I’m anxious, I’m more than likely not in the moment. I’m in the ‘what if’ moment that is fiction and not present. When I’m not present I’m not centered. When I’m not centered I’m not my best self. When I’m not my best self, I’m not performing at my best.

Aria, Reo, Rianna and Doc deserve my best. You may be wondering, “Jesus! What a load of pressure you’re putting on yourself! You’re no super woman.” I would heartily agree. I’m not. I am, however, privileged to have these beautiful children and husband, who as I’ve said, deserve the best of me. More importantly, I deserve the best of me. I’m not healthy when I’m anxious and neither are you. I’m not at peace and it is precisely in times of crisis that peace is so healing, so necessary and yet so often out of reach.

I’m not suggesting that I deny myself the real worrisome aspects of this journey. There are plenty to keep me well occupied. What I don’t need are things to worry about that aren’t real but are simple manifestations of anxiety. These are things that complicate life and I can go there very easily. For example, in this email I go on about Aria and Kindergarten, worrying that she won’t be able to handle it. Kindergarten is nearly an entire year from when I wrote this email. You and I know that so much can and will happen in that time so why worry? But I did because I attached all kinds of ‘what if worries’ to the real worries I was presently contending with.

This is how it happens. Real worries and concerns arise and then suddenly they take on new shapes and forms that fling me into a world of my imagination. I find myself completely nervous and unable to enjoy the moment. I’ve lost my sense of peace. I detach from those around me. I lose my sense of compassion for a moment. I become more self-absorbed. These are not healthy things and this is not how the gift of Life is to be lived.

I am getting better at identifying when this process starts to happen. I'm getting better at stopping myself and bringing myself back to the moment. I am able to live comfortably with knowing that what will happen a year from now is a complete unknown. I’m comfortable knowing that how my day will unfold is also an unknown. I’m thrilled at the opportunity to watch it happen, rejoicing in each and every moment of it.

This, my friends, is a process. It has taken me a long time to learn how to live this way. It is simple and not always easy but I swear to you, it is true and full of purpose. (September 2009)

December 3, 2008
Subject: Aria is off to the ER!

Here we go again! Aria climbed into bed with us around 3am and Doc asked if she was feeling ok. I heard Doc turn the light on in the bathroom and knew he was going for the thermometer. I felt Aria. She was definitely warm. Doc came in and Aria understood by the shape of his silhouette that he was holding the thermometer. She knows what this means. A little gasp filled the room followed by an "Oh No!" but she sat up and understood what she needed to do. 100.9 was her temperature. 100.4 earns a trip to the ER. We waited a few minutes and took it again. 100.9. We all got up. I checked her hospital bag, while Doc put magic cream on her port so she can be accessed in the ER and then I cuddled with her on the sofa downstairs waiting for Doc to get dressed. I had already called the inpatient pediatric oncology ward and let them know we were coming. If her counts are above 500 then we won't have to be admitted but if they're below then we get to stay. Aria's ANC a week ago was 990 after 2 weeks of falling counts. She may finally be getting the bug that she's fought for so long. Let's hope her counts are above 500. Let's hope she isn't getting a bug. Her spirits are pretty high. She was getting anxious as they were leaving about 'the poke part'. I don't blame her. She's done it a million times already but the truth is that it's never any fun! I reminded her that the ER has popsicles and that lit her up! As soon as I know anything, I'll let you know. This one has blind-sided me. ~j

December 3, 2008

Subject: Aria has been admitted

Well, her temperature at the ER was 99. They did a quick throat culture after looking at her tonsils and she got a chest x-ray. Her ANC was 180. I know! I know. I can almost imagine each and every one of you reading this and feeling sunken. I feel the same way. Doc mentioned to me that she got her vincristine a week ago so it isn't a huge surprise to him that her counts tanked. When he called a few minutes ago they were still in the ER waiting to be transported to her room. I can tell you right now that she's more than likely thrilled. I'm serious. She'll be watching movies all day long, which is a major highlight for her. I'll let you know what room number she's in. Keep us close and in the light! ~j

Aria and the end of Autumn 2008

Aria and Reo having a goofy moment in the car.

The entire month of November was a blur. I didn't write anything about it until the first day of December! There was a monotony that I couldn’t seem to escape. I was tired and on the edge of illness a lot of the time, which made life particularly draining. As I read through this email I realize that the month was also the beginning of some serious conflicting emotions that would plague me for months afterward. Specifically, the disconnect of Aria doing so well and looking so well but just beneath the surface of that appearance was this raging disease constantly threatening to remind me of its power and darkness. I felt a desperation to return to some semblance of normal but that normal was always just out of reach. It felt like we were so close and yet so far.

As I think it about it now I recognize the wonderful lesson this month gave me. The image that comes to mind is this; there was a root protruding from the crumbly flesh of earth that appeared strong and secure. I reached for it, holding on allowing my full weight to hang from it, when it began to give way. I felt like I was falling still holding to this idea of a root and as I fell I caught sight of another root, so I reached for it but it, too, pulled from its earthy anchor falling with me. Root after root--the idea of normal pulling free from my illusion of it as I gently tumbled into truth and trust. This is how the free fall through November went. (September 2009)

December 1, 2008
Subject: Aria and the end of Autumn

It is November 10, 2008 at 10 o'clock in the morning as I begin this writing. The day is warm and mild. I've been in a negative place, which is probably why I haven’t written much. I'm slowly beginning to emerge from this shadow but I have a moodiness I find unpleasant and difficult to resolve. In some ways my mind-body perspective is in perfect rhythm with the season. Leaves dying, drying and falling upon a cold wet earth. Layer after layer of them sheltering decay, nourishing slow growth, awaiting warmth and sun. I'm like tumbling leaves riding the current of emotion.

It’s a clinic day and we parked on "pink" level in the parking garage of Sacred Heart Children's Hospital. We are taking the elevator to level 3 for what seems like the millionth time in a mindless, familiar routine. I can't escape my voice gently reminding me,
"Hey, Julia, psst! There's nothing routine about this!"
Sometimes I want to smother that voice, but the reality is that the truth is the truth.

Aria was going in for a simple finger poke so we could check her counts and see if her chemo needed adjusting. The clinic was quiet and bright but there was a heaviness in the air. It's always there. We checked in; Aria was weighed and measured followed by assessing her vitals and almost immediately they were ready for her finger poke. We were done with the appointment in about 40 minutes. Aria had no interest in staying this time to play. We left and waited in the hallway for the elevator, trying to keep Rianna somewhat contained. She had already managed to push both the up and down buttons so we were trying to guess which elevator would give us our magic ride. As the middle one opened, a lovely young woman and her son, who I learned was 10 years old, were standing there. We entered like a storm. I was reassured by the mother that having Rianna push every single button including the alarm was not going to phase them in the least. This was a relief. Rianna proceeded to push every single button and we began our start and stop descent. I noticed that this woman was looking at Aria with a degree of curiosity. She had the sweetest, most compassionate smile. She looked at me with her eyebrows raised knowing full well that an elevator stop on level 3 is pediatric oncology and I nodded my head. She sighed closing her eyes slowly and nodding. Suddenly her son broke the tenderness of the moment by lifting up his shirt saying,
"See what I have to wear?"
He was wearing electrodes and a heart monitor. Rianna and Aria were enthralled. I'm sure Rianna was thinking, "More buttons to push! Yipppeeee!" I promptly picked her up. I said to him,
"Whoa buddy! What's with all the plugs?"
He giggled and said, "My heart's broken."
Stunning. I was speechless. I was instantly drawn to his mother, who said,
"Yeah, he had open heart surgery a few years ago and we may need to do something like that again. We're just checkin'."
"Well, I'm sure those wires and electrodes will show your doctors everything they'll want to see so you can start feeling really good again!" I told him.
"Yeah I know." he said with resignation.
The girls and I were leaving the elevator. I turned, looked at the mother and with my hands over my heart I told her, "I'll keep you right here." She let out a sigh and smiled, "Thank you--you too!" The stainless steel doors clicked shut leaving me to my world and her to theirs.

Later that day we got word that Aria's ANC was 2500, which is too high and higher than 2 weeks ago, which was 2246. Dr. Trobaugh was unphased. I imagine that she’s looking at Aria’s ANCs over several weeks so little fluctuations are to be expected. For me, it is still unnerving. I’m just not used to it yet. I suppose I’m impatient—just wanting to find that stable ground. I’m wondering if it even exists. Regardless, Aria feels really well. Her hematocrit was nearly normal, which explains her high energy level. She has been able to go to school. These improvements are remarkable and yet I found myself feeling rather negative. It was the strangest thing.

I found myself feeling completely irritated almost every time someone said to me, "She looks so good! She's doing so well!" I remember smiling and feeling thankful and joyful that she is doing so well and at the same time I was seething. I kept wondering, “How can my spirit be at such odds?” My attitude was making me nuts! I couldn't seem to shake this desire to scream,
"Yeah, she's doing great BUT she has leukemia! She's taking chemo every single day! We still have 16 months to go!!"
That BUT word was creeping in like nobody's business and I was allowing it to happen. I couldn't stand it and at the same time I couldn't halt it either.

There was this weird darkness about my thoughts surrounding her. I wanted so badly to focus on how well she was feeling and how good she looks. I wanted so badly to be able to focus on the moment and give it my sunny all. I wanted to be positive. It felt false. I tried to take energy from others and their perspectives. My irritation had nothing whatsoever to do with the people who made those comments per se, but I think it had a lot to do with wanting to be validated somehow. I wanted people to acknowledge that she is doing well but that things are still challenging. The process is exhausting in a peculiar sort of way; there isn't anything too physically demanding but the emotional weight I carry is burdensome. People are genuinely concerned when they ask about Aria and they are genuinely thrilled to celebrate her wellness. It does help to hear those things. At this time, however, I was not in a frame of mind where those words were of much comfort and that was frustrating.

I can reflect and know that I have people in my sphere who know all the details of this process on an almost daily basis. They understand how tedious it is and how the emotional pendulum swings wildly. The work to get it to rest is a grind. Like anything in life, things get old and stale. People look for ways to breathe life into the same old routine. This is no different in almost every respect.

It is worth mentioning that during this time, I was not physically at my best. I hurt my back and that had really soured my disposition. I had picked up Rianna in a weird way, apparently, and tweaked my lower back something awful. I've never had anything like it and I was so uncomfortable that it was unnerving. Pain and fatigue are formidable foes.

A few days after Aria's finger poke, it was my birthday, which is normally something I celebrate in parade style. Not this year. My folks were here, which was wonderful. They were able to see Aria much improved and I found their perspective helpful and soulful. They allowed me plenty of latitude with my conflicted emotion. They understand the nagging presence of the 'but' that whispers incessantly in my ear. Being here with us and seeing our day to day was, I think, a reminder to them that as good as she feels, she's still not out of the woods. Again, I think my overall compromised health put me in this place of spirit that was seeking and searching for validation. I wanted others to see things as I do. I didn't want to be dismissed with comments like, "But she's doing great!" My folks were tender and gentle with me. They understood completely that my reserves were depleted and they stepped in whenever and wherever they could. It was a relief having them here.

Shortly after their visit, I got hit hard with a nasty bug that I am just now, 2 weeks later, beginning to recover from. My back is improving but that healing process is taking a long time too. Clearly this has affected my view of that last few weeks and I think it is important to say that when I feel low, it is hard to see the world as a really rosey place. It is no wonder I couldn't celebrate Aria's wellness with a full spirit when my own health was teetering on the edge. I have to validate myself and I have to stop searching for it outside of myself. I am the keeper of my health and my reserves. Only I can replenish myself. When I remember this, it helps a great deal.

However, these past few weeks have been tough and the worst part was that I was scared to death Aria would get whatever was keeping me down. I kept hearing myself say, "What if Aria gets this? Oh man, I can't imagine how sick she could get!" cough. cough. "Where are the chlorox wipes?" cough cough. sneeze, sniffle. "Aria, how you feeling? Are you feeling stuffy? Do you ache anywhere?" Aria often said indignantly, "mOm, I'm fine! Sheesh!" I was relieved, but still worried. BUT, there it is again.

Rianna got sick and so did Reo. I dreamed of magic capes made of chlorox wipes for Aria. I imagined a matching chlorox wipe crown. I became obsessed with cleaning surfaces and keeping germs away. I kept telling myself that I was getting better and feeling better than the day before. "Man, my head aches! Yeah, but you're not as stuffed up as you were yesterday. Well, that's true, but gee whiz I'm tired. I just want to take a nap. No, no, no, you're feeling better besides you haven't cleaned the toilets yet. You don't want Aria coming down with anything!" Suddenly I'd have a burst of energy and I'd be off. It was a crazy several days!

Aria never got sick. She managed some sniffles but was never feverish. I noticed that she tired a little more easily. It was interesting that she started to feel luke warm about school and almost immediately upon entering the house after school would change into her pajamas.

Aria has the most incredible assortment of pajamas you can imagine and that is all she wants to wear. It makes perfect sense to me and the curious thing about it is that it represents one of the subtle emotional trials about this journey with her. Aria associates her pajamas with being in the hospital and being sick. So do I. She knows that she's more comfortable wearing them and would wear them all the time if I allowed her. Regular clothes are not comfortable. It seems to me she wants to explore fits and bursts of play but most of the time she wants to lounge, play quietly, watch movies, and slowly, gently heal. I know this makes perfect sense, but I can't help sometimes feeling seduced in my desire to hurry this whole process along. I want to be looking back at all of this from the other side, knowing that I'm really moving on. I'm still moving forward but my steps have slowed and I have to accept that this is just another part of the overall journey.

Aria went back to clinic for her chemotherapy and examination with Dr. Trobaugh on November 25, 2008. Doc was not able to be there with me because he was at a meeting in Seattle that had been arranged months before this appointment was made. Now this, under normal circumstances would have been absolutely no big deal. However, I was feeling anything but 'normal.' My back, although better, still hurt in certain positions and I was keenly aware of how much I was guarding my movement. On top of all that, I was exhausted. I hadn't been sleeping well for days and my cold raged on. I was wiped out and the thought of being in clinic by myself for hours was absolutely overwhelming. I was so frustrated with myself too. Clinic is a very familiar place and I know the routine like the back of my hand. I knew I was going to be able to manage but I just couldn't escape feeling like it was too much.

I wrote an email to my dear friend Kai, explaining to him how I was feeling. My email was meant to sift through my emotion and find some clarity and strength on the matter. I knew I'd be fine and everything would be great, but I just couldn't see it very clearly. I vented and purged and felt better having done so. Kai immediately responded to my email with a phone call. Although these are not his exact words, this is what I heard;
"Hey! Funny thing. I just happen to be free during the entire time that you're going to be in clinic so I'll just meet you there!"
I burst into tears. I sobbed, which is something I haven't done in I don't know how long. The relief I felt was overwhelming. I was beyond grateful. It was such an unexpected surprise and came without me having to ask. It came without me feeling guilty about still needing help and not wanting to be burdensome to others and so forth. For Kai to volunteer and for him to know that that is exactly what I needed is true friendship in action. My kids adore this man and when I told them that he was going to play with us at clinic, they jumped for joy. Literally. Aria's eyebrows raised and with a crooked little devilish smile she exclaimed, "WHAT? That's great!'”
It was.

Clinic was busy on this Tuesday with people that I didn't recognize. Many of the kids were older and there was a bustle to the clinic that seemed new. The kids were great and Kai was wonderful to play with them in such a physical way. He threw Reo around on the gym mats in a manner that Reo loves but I would never have been able to do. Rianna cooked all kinds of food for Kai. They colored together and played. I don't play very much when I go to clinic. I still find it a hard environment in which to feel playful.

Aria felt very independent. She wanted to be weighed and measured without my help. She wanted to go into the exam room to have her vitals taken without me tagging along. "I'm ok Mama! I can do this myself!" she said. A part of me was overjoyed by this but at the same time I felt sad. What a thing for a 5 year old to say. What an experience for a 5 year old to have and to know and to understand so well. It is hard to be witness to all of this. It is a jumble of feelings, and I'm constantly sorting them.

Her independence enabled me to catch up with her beloved Krista and talk about some issues that came up with Aria's parent teacher conference that I had had the day before. Aria's preschool teacher isn't worried about her academically or even socially, but she is concerned about her overall stamina and endurance. Aria is different from her peers in this regard. She doesn't have the same amount of energy. She doesn't have the same kind of focus. She tuckers out quickly and her teacher wonders how she'll fair next year in kindergarten 5 days a week. Right now Aria attends school 3 days a week and it is plenty. 5 days a week sounds enormous and it is only for 2 1/2 hours! I'm requesting that Aria's preschool teacher, who also teaches Kindergarten, be her kindergarten teacher. I think that continuity will be grand. She knows Aria and understands her. She understands our situation completely. I remember sitting there at the conference telling myself, "You will not cry! You will not cry! You will not cry!" You see, Aria is doing so well, BUT.........

I told this to Krista with tears in my eyes. Krista understood. Krista knows. This is what she does. She was quick to validate me and to reassure me that Kindergarten is next year and a lot can happen between now and then. Krista reminded me that Aria may feel a lot better over the course of time. Her energy may continue to increase. Her stamina may improve. We just don't know. Once again I found myself back in the moment and grateful that Aria is doing so well.

Dr. Trobaugh was ready to see us. It had been a month since I had visited with her. I've said it before but I'll say it again, Dr. Trobaugh walks around with a casual air that envelopes me with 'everything's gonna be alright.' It is almost a mystical experience being in her presence. Her confidence, her focus, her care, her concern, her joy, her laughter, her earthiness, her overall being is a whopping dollop of rich yumminess that I can't seem to get enough of! Aria climbed onto the examination table. Kai played with Reo and Rianna and I wandered around the table a little. I paced. I was trying to feel physically comfortable but not much was working. Nothing about me felt still or calm.

"So, how you been?" Dr. Trobaugh asked.
I'm trying not to cry. "Good! We've been good! Aria's been really healthy. She's been feeling as well as I can remember! It's good!"
"Uh-huh." She looks at me deeply, penetrating my bravado.
I'm a little nervous and breathlessly speak as I realize she's seeing right through me, "Well, I've been sick. I hurt my back and I've had this weird nasty cold for over a week. Reo and Rianna both got it but fortunately Aria's been able to avoid the worst of it." I'm wondering why I feel like the kid whose been caught with my hand in the cookie jar.
"That explains quite a bit." she begins.
I cut her off in a weird panic. "Explains what? What's her ANC today?"
"Well, that's the interesting thing. Her ANC dropped quite a bit to 990 so she's obviously fighting whatever you got."
I hear myself say, "uh-oh." but I say aloud, "Well, she's done really well." I notice that I'm sweating. I'm trying to be light.
It is here that Dr. Trobaugh shifts her gaze to Aria. She says emphatically, "She looks amazing! She IS doing really well." She approaches Aria and lets her know that she's going to examine her. She begins by asking questions that are directed at me but she asks them to Aria, which is so sweet. I let Aria answer what she wants to and I fill in the rest.
"So Aria, have you been eating ok? Does your tummy hurt? Does anything feel bent? (this is Aria's word/way of describing any kind of pain) How's your peein' going? Have you had good poops?"
Dr. Trobaugh is almost sing-songy about her manner. The lightness she brought to the room was healing. Still, I was listening and answering all the while hearing myself say, "This is a routine evaluation. She's doing great, but....."

Dr. Trobaugh suggested that we decrease her chemo to bump up her ANC a little. We're going to try this dosing (67%) level for several weeks and see how Aria does. The fact that her ANC is so low and that we've been dealing with a tenacious bug for so long is worrisome and Dr. Trobaugh wants Aria on the rebound sooner than later. Clearly, she doesn't want Aria's counts to continue trending downward, which would only make her more immuno-suppressed and susceptible to illness. I asked her briefly about Aria's preschool teacher and her concerns about her energy level. Dr. Trobaugh is of the opinion that Aria's stamina may increase but that we'll just have to wait and see. "Julia, we want to keep her a little anemic so her energy won't ever be all that great. The chemotherapy she takes also does a number on her stamina so, we just don't know what the months ahead will bring." This is a bitter pill to swallow. I want to know what the months ahead are going to bring. I want that illusion of control to give me some kind of comfort. I know this is absurd but the place I find myself feels frustrated that we've come so far, we've done so much, we still have so far to go and we still don't know. I remember sighing and leaning against the wall for a moment. Shortly afterward as things were winding down, we exchanged a few pleasantries. I told Dr. Trobaugh that it had been my birthday and discovered that she, too, is a Scorpio, which explains a lot to me. It is no wonder she and I resonate so completely! It is no wonder that I feel completely at ease with her. It is no wonder that she gives me such incredible strength. I adore Dr. Trobaugh from the top of her head to the tips of her toes!

Thanksgiving was just 2 days away and I had no interest whatsoever in putting on any kind of feast. In fact, all I kept thinking about was going to bed for 3 days! I wrote to my Goddesses about the last few days and it was in the process of writing that something dawned on me. It is so obvious that it's almost funny. I realized why clinic remains so challenging. Why the air is still so heavy. Why I'm not inclined to be playful. Why I sweat during our evaluations with Dr. Trobaugh. Why I'm nervous. Why I hold my breath. I'm scared, plain and simple. I get scared every single time Aria's blood is drawn. "What is it going to show this time?" I wonder and I worry. "Is something horrible going to show up again?" I know the likelihood is slim, but it does happen. I don't quite know how to resolve that fear. I'm not sure I'm supposed to do anything but to learn to live with it. Identifying and admitting that it's there is important, even in this phase of her treatment when she's doing so well. I don't have nerves of steel. I feel vulnerable but I'm ok.

The day after her treatment, she started to feel strange and I began to worry that she was finally getting my cold. By Thursday she was wiped out. I had given her a bath with Rianna and noticed that Aria was a pale yellowish color compared to Rianna's rosey pink hue. After her bath she complained of being cold and immediately put on some pajamas and put herself to bed. I watched her closely. I paced around her bed and periodically felt her forehead for a fever I was almost certain was going to happen. She slept soundly for over 2 hours and when she awoke, the twinkle was back in her eyes, the sparkle was back. Doc gently reminded me of Aria's chemotherapy just a few days before. He wasn't the least bit surprised by how her body was reacting, which didn't make him any less concerned but his ability to focus on the effects of chemo versus some kind of sickness brewing was very helpful to me. I realized that my mind has been a little stuck in a 'sick' place.

The process of this writing has revealed a couple of the things to me. I keep thinking about the woman I met just as we were leaving the hospital for the very first time. Everything was completely new to us. We were just beginning our journey and she was already 10 months or so down the road. She was then where I am now. I remember her anger. I remember her need to be understood and I understand her need. I've just spent 2 weeks in that place and although I never felt angry per se, I felt annoyed and rather forlorn. I realize that I began a futile search for validation from others. I realize that I was depleted, which is what fueled the search in the first place. It is crystal clear to me now that the farther from myself I seek to find what will restore me, the longer it will take to find the healing I'm so desperate to discover. Today I spent the day very close to my heart and my spirit. I didn't find myself searching beyond the confines of my own being. It felt good to return to myself once again. I'm afraid the moodiness in the air remains but I am confident that the warmth and sunshine that I wish to see will soon radiate from within me. I remind myself that the promise the new day brings is a promise I ought to make to myself. I do and I will.

Aria is a joy. She is so vibrant and full of life. She sparkles and glitters. Her imagination is wild and she flits and flutters through her days like the fairy spirit that engulfs her. It is marvelous being in her presence even when it's challenging. It helps so much to assign words to the things I see and feel that have come to dictate so much of what defines our world. I know it is a rowdy ride sometimes. Having you along is a comfort. The fact that I can open the window to my spirit to let out what is stale and stagnant while welcoming freshness is an enormous blessing. ~j

Saturday, September 5, 2009

I Spy...

November 5, 2008
Subject: I spy……

It was 6 am this morning. It was dark and I could smell the warmth of Aria cuddling beside me. The quiet stillness of the morning was gently breaking with stirring sounds, shifting blankets, creaking wood, and contented moans and stretches coming from Rianna's crib just a few feet away. Aria was wide-awake and playful.

"Hey Mama, I spy with my little eye in this dark room something purple that is a cup filled with water in the bathroom."

Trying with all my might to suppress a giggle that is about to erupt and shatter the dawn, I feign bewilderment, "Whoa, that's a good one. Soap?"

"Nope! Try again! It's something I drink from!" she says with delight.

"hmmmmm", I pause, "Oh, I got it, your cup!"

"Wow Great Mama! You're turn!"

"Ok Aria" I begin, "I spy with my little eye something in this dark room that is fun and stinky and small and your sister."

Aria,"UGHS!" with exasperation and says, "Rianna! ok, My turn!"

"Mama, I spy with my little eye, something that is white with a blue star that I sleep on with my head."

I practically cut her off and say a little too loud, "The sky!"

"UGH! NO! try again!" She's slowly and rather sheepishly raising and resting her head on a pillow with the case she's spied.
We both utter in a hushed discovered kind of way, "uh-oh Rianna's waking up! shhhhhhh..."

I say with a complete lack of confidence, "is it the pillowcase?!"

"Good job Mama! I'm proud of you! You're turn!"

Rianna is standing in her crib. Her silhouette makes me think of Phyllis Diller. She's making happy cooing sounds and I'm relieved to know that she's slept well. The sun is just beginning to rise. The quaking aspens that are just outside my window are beginning to glow like the rich smooth hue of lemon custard. I can hear Reo putting on his morning costume. I'm guessing that he's chosen his spiderman one.

Aria interrupts my reckoning, "mOm! it's your turn!"

I chuckle and say, "Aria, I spy with my little eye a miracle."

"Huh? What's that do?"

"Aria," I tell her, "the miracle I spy is You!"

She bolts onto her hands and knees burying her face in the pillow and wagging her imaginary tail. She is blissfully giggling! Rianna begins to jump up and down in her crib. She is squealing with joy.
This is how my day began......