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 she...has......daugh...here....poooof!" 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.
~j
