A slice of heaven

March 30, 2009
Subject: A Slice of Heaven
Heaven isn't a place to which one ascends. It is a state of being that never ceases to exist but finds itself obscured by Life's infinite realities. We are often unable to access heaven here on earth so it is no wonder that we look for it outside and above ourselves. However, every now and then we are gifted a glimpse, a reminder that heaven is present, always present. Waiting.

The Chase Youth Award ceremony Thursday night was heaven. I could tell you that it was great, and beautiful. It was touching and endearing. It was sweet and exciting. It was all of those things and yet it was infinitely more. Therefore, I'd like to invite you to sit with me here, while I tell you a story....

It was 4 30 Thursday afternoon, March 26, 2009 and the kids had finished an early supper. They were sitting on a century's old love seat in our dining room getting their shoes on. They were excited to be going to the award ceremony. They, like I, had no idea what this was going to entail, but it didn't matter. It was something new and different. It was something about Reo and it was worthy of a great thrill.

The ceremony was scheduled to begin at 5 30 and we pulled into the parking lot at 5 23 and we still had to walk a distance to get into the building. I knew it wasn't going to start exactly at 5 30. These things never do and this is an event celebrating kids for heavens sake so it is supposed to be completely light-hearted and fun! Regardless, I had this hell-bent notion that we had to be there earlier, so waltzing in at just before 5 30 was hairy. I kept asking myself, "Where is my joy? Where is my fun?" What made it worse was 2 of our friends called to ask, "Where are you guys? The place is packed! I took a deep breath and gave myself a little slack. We were late. I loathe being late and feeling hurried and what's worse is that we left in plenty of time! I told myself, "Julia get a grip. It is what it is. Let it go and lighten up." The moment we entered the auditorium, suddenly everything was right. The event wasn't close to starting. Sound checks were still going on. People were mulling about and finding their seats. We had plenty of time and I instantly relaxed! My mind was tempted to be an asshole and say something like, "See Julia? You dope! What a total waste of energy!" My heart was equally tempted to cower in shame, repeating with defeat, "I know..I know....sigh" I didn't allow either to surface. Instead, I took a deep breath, held my head high and told my mind and my heart, "Sometimes isn't a matter of having it all together. Sometimes it is simply a matter of recognizing when things are falling apart and holding together anyway."

The auditorium was a large typical university type space with a traditional looking stage and a balcony. It was standing room only and the energy in the air was electrifying. Laughter, shrills, glee, smiles hugs, high fives, and hand shakes were overflowing my senses. Suddenly the stress I was feeling over just wanting to get here had transcended into pure delight over what was about to happen to Reo. I was absolutely over-joyed.

We were immediately greeted by a dear friend Terry who gave Reo a small gift, which completely blew his mind. It was the movie, Bolt, which he promptly coveted and held onto for the entire evening. Tata and Amy were reserving seats for us in the second row so we quickly joined them and sat down. Reo was twitching in his seat. Tata sat beside me holding Aria, while Doc and I took turns containing Rianna. Amy sat beside Doc who was only one seat over from the center aisle. Reo looked up at me more than once and said, "I think I'm gonna win!" I thought it was time to give him a little perspective. I had him take a moment and look around at all the kids. "Reo, all of these kids have been nominated for some kind of award and only one of these kids will get one for courage. It might be you, but then again, it may not be. Either way, take a look at how many heroes are here!" Reo looked around for a moment and said, "Wow! I'm gonna win Mama!" It was all I could do to keep a straight face! I showed him the program that listed the names of all the kids that had been nominated. I was mildly bewildered over the number of names. Pages of small print listed name after name after name. I said to Reo, "Look honey. Look at all these heroes, just like you! One of these kids is going to receive an award for courage. Just one. Let's see if we can find your name." We began slowly searching for his name. The reality of the situation started to dawn. Reo was beginning recognize that his name was but a mere speck in a sea of names. It was so impressive. Finally, we found his name and shortly afterward, the ceremony began.

The auditorium filled to capacity was silent. If you can imagine, hundreds of little kids and their parents completely still. It may have lasted only a moment or so but it was nevertheless palpable. The mayor of Spokane began to speak and the pulse of excitement began to beat. She spoke about the attention drawn to our youth regarding issues of drugs and alcohol, pregnancy, drop-out rates, bullying and the like and reminded everyone that as important as these issues are, tonight was not about that. This ceremony was about celebrating the youth of Spokane who are making good choices, who are leading their peers and over-coming obstacles that surpass what most ought to endure. She told the audience that tonight was about celebrating kids who are doing great things. My lip began to quiver ever so slightly and I felt this swell of emotion rise in my face that wasn't yet close to spilling over in my eyes but was certainly building there. I was so grateful for the piece of gum Tata offered me so I could be distracted.

The program continued with the typical production-political type speeches that were actually lovely and poignant. A short video was shown describing what the Chase Youth Awards actually are and how they came to be. Jim Chase, the mayor of Spokane years past left this award ceremony as his legacy. It was his brilliant idea to turn the attention about our kids upside down and take notice of all that they do right and well and celebrate those that truly excel. This is an organization that is run entirely by the youth of Spokane. The judges, the selection committee, the presenters and those putting it together are kids from all of our area high schools and middle schools. It is, truly, an extraordinary event. I had no idea! Just before the awards were to be given we were told that this year 1,000 kids had been nominated. That number rang in my head like a gong. 1,000 kids nominated. I couldn't wrap my head around it. It was then that I noticed how the awards were actually broken down and just how significant it all was.

There are 3 primary groups of kids: Youth (elementary age), Middle School, and Teen (these kids were awarded at a ceremony held later in the evening.) For each primary group there are 6 categories, such as leadership, creativity, courage and so forth. For each category there are 2 awards granted; one is an individual award and the other is a group award. There is also a special award called "The Spirit of Jim Chase" that is granted to a particular group of kids. This year's event was witness to a total of 30 awards granted and Reo was one them.

It was an extraordinary experience to watch him process what was unfolding before his eyes. He was listening to stories, hearing a child's name called, applauding with enthusiasm and watching every single movement that these kids made. I could see him calculating how they walked up to the stage, climbed the steps, walked across the stage shaking hands with the several adults waiting to greet them, receive the award and then sit down on the stage. He was absolutely lit!

Finally the time came for his award. Erica Ames, a beautiful and statuesque young woman, began her presentation by letting the audience know that the only way to understand the reason for this person to receive the courage award was to read the nomination letter in full. "It tells us the story" she said. Erica is a sophmore in high school. She is also a former Chase Youth Award recipient and has been involved with this organization for several years. She is currently the Chair of the Chase Youth Commission. She stood at the podium with all the poise and grace of a seasoned pro. It was hard to believe that she had probably only just recently come of age to obtain a driver's license. Her confidence was unwavering and her presence offered something wise and reassuring. The other notable thing about her is that her right arm is missing hinted by only an empty sweater sleeve hanging by her side. What I found particularly striking about this obviously defining feature of hers is how completely inconsequential it seemed. Everything about her manner seemed to say, "Yeah, I don't have a right arm. So anyway, moving right along.." and that truly is all the attention that is paid. It's like you can't help but notice that her arm isn't there and then it doesn't enter your mind again. At least that's how it felt for me. She read my letter as if she had taken in Reo's story, my story, our story as her own. I'd never met her before, but suddenly it seemed as if I knew her. As if I'd always known her.

Reo's eyes were glued to her. He knew this story. He said, "Mama, she's talking about Aria." I smiled at him and nodded. Thank God I was chewing gum, otherwise I would have not have been able to hold back the flood that was building. Reo looked at Erica briefly and then turned to me again and said, "She's talking about ME!" That's when it hit him. He really he had won and he was going to be one with all these other kids he'd been watching for the last 20 minutes. He smiled and bounced on his seat a little and held his fingers to his mouth.

"....and the 2009 Chase Youth Award for Courage goes to.....REO LAYTON!" The whole place erupted with applause and Reo bounded out of his seat with the force of pure jubilation. Doc met him in the center aisle. Reo paused for just a moment needing a little reassurance. I could hear Doc telling him, "Way to go Reo! I'm so proud of you! You can do it! Go on up there big guy!" I was standing applauding along with several other people with tears streaming down my face. I watched that little kid walk over to the stage, climb several steps up onto the stage and walk casually and confidently to all the adults, including Erica, waiting to meet him and shake his hand. Reo bowed in front of the mayor and beamed while she placed a glass medallion on a large purple ribbon around his neck. He was given a large black folder and turned like pro to the audience center stage so that he could have his picture taken. In true Reo fashion that captured happiness in the purest sense of the word, he stood there clutching that folder to his chest like it was the world's best prize. He scrunched up his shoulders and with the biggest cheesiest grin ever he posed for the cameras. It was the the most adorable thing I've ever seen. He marched on over to the side stage where several other kids were already sitting and there he watched the remainder of the ceremony unfold. As the next speaker was making his way to the podium Aria leaned over and said, "I think they're going to call my name next!" Tata and I burst out laughing. We didn't want to kill her buzz but I made it very clear that tonight was about celebrating Reo. I told her that maybe next year she would be nominated and maybe she'd win an award. "We'll just have to wait and see!" I said. Between you and me though, now that I know what this thing is all about, I don't know if I have the courage to write another letter! Holy smokes!

We heard stories of kids putting together food drives, recycling programs and even one group of middle school kids that created a suicide prevention program that went to local elementary schools modeling to the kids how to share and express feelings. We heard a story about a young girl in foster care over-coming all kinds of odds stacked against her, rising above the status quo and leading her peers toward excellence. One extraordinary story after another. Beautiful kids, parents, families, friends coming together in celebration of the human spirit that is overwhelming good and decent. It was an absolutely breath-taking evening.

When it was all said and done, Reo came off the stage after having been up there for a good 45 minutes and said to me, "Mama, I'd like to introduce Aria to the mayor." The way he said it cracked me up. It was as if he and the mayor were old buds or something. It was adorable and we were invited back stage to a V.I.P party and were hopeful that we could meet the mayor. I was able to meet Erica and chat with her briefly as well as several other people. In the mix and madness of all of this, Reo was starting to melt-down. I think the adrenaline was wearing off and he was realizing just how far out of his comfort zone he was. He began to complain that his leg hurt and was holding back tears. I think we were all emotionally overwhelmed and ready to go but he was determined to introduce Aria. So we persevered and went back stage. Reo waltzed right up to the mayor and said, "Excuse me mayor, I'd like to introduce you to Aria!" The mayor was just delightful. She beamed and bent down to meet Aria who was definitely in the spotlight. Several people were interested in meeting her and Reo and the 2 were receiving attention that was a little unnerving for them. These are rather shy country kids so this kind of attention was beyond their experience. The mayor mentioned to Reo, "You said you wanted to introduce me to Aria." I thought to myself here is this kid on the stage facing an enormous crowd who for a moment are celebrating only him. He has it in him to whisper to the mayor in his moment of glory, "you gotta meet my sister Aria!" This is what makes Reo such an extraordinary kid. He has such a subtle and sincere way of sharing the moment so that light shines even brighter for everyone.

You can imagine that Doc and I were absolutely bursting with pride over these kids. Naturally people were complimentary of my letter and told me so. Life is so good in that it inhibited me from relishing in those compliments for too long by having my kids uncomfortable, teary, whiney, and tugging at me desperately needing to leave. I wasn't able to talk to anyone for any length of time and that was perfect. I'm certain I was not walking on the ground when we left. I was warm inside and out. I was smiling all over and I was filled with a new found sense of calm. I would love to take full credit for making this happen. I would love to consider myself so clever to have written such an original thought. Wouldn't I be oh so grand? But Life shows me in such a gentle and real way that this isn't the reality. My letter resonated deeply not because of its uniqueness but because it is a well known and well worn story. It is a human story. Some of us have already experienced it or are experiencing it. Others know someone dear to whom they can relate through the words on these pages. The names differ, the details too but it is the same. It speaks to the same heart showing us once again of our infinite connection.

Reo was in tears as we walked to the car, but by the time we got our seat belts on he was better. He was joyful and full of story. We took the kids to Dairy Queen, which was an over-the-top treat for them. We had a ball. By the time we got home, it was just before 8 30 and the kids were wiped! We got everyone tucked in and they were sound asleep in no time. The next morning, Reo came down to breakfast wearing a super-hero T-shirt and his medal. He couldn't wait to get to school to tell everyone. He beamed all day long. I finally had an opportunity to look in his folder and see what was in there. I found his Chase Youth Award certificate and on it was a purple and gold seal saying "Judges Choice". We were told that a handful of kids were given this seal to document that their award was particularly outstanding. There were several letters of congratulations including one from our governor and a fancy envelope with the seal of the United States House of Representatives. It was a card from our state's representative. I plan to put all of this into some kind of collage and frame it for him.

It all began with me reading an advertisement in the newspaper requesting nominations for this award. I cut it out of the paper and placed it by my computer. I thought about it for a week or 2 and the day before the deadline, I was overwhelmingly compelled to write that letter. It was like I turned the spigot of my mind and out poured those words. I knew the moment I hit the send button on my computer that it was the right thing to do. It was a good thing to do. I didn't allow anything to deter the focus and attention I wanted to Reo to have. I sensed I was tapping into a light, something we hadn't known before and I wasn't afraid or doubtful.

It was like this; Imagine a stone wall that juts into a small lake. Imagine the wind blowing slightly. Imagine you are standing alone on top of this wall facing the water. Imagine your arms held wide open with only the wind and the sun as companions to your senses. Imagine knowing with every fiber of your being that everything is right and good. Imagine saying to yourself, "This is heaven and I bow deeply to its sacredness." I was a little girl in New England in the woods of my childhood by a reservoir on a stone wall the first time I knew heaven surrounded me. I've had glimpses several times such as this but this ceremony was the first time I saw it around and within my children. The profoundness of this experience is such that I can rest in a state of grace knowing that despite hardship, despite worry, doubt, anxiety, despite Hell, I can embrace "Come What May" with the power of heaven that all will be o.k. ~j

Aria's loose tooth

April 11, 2009
Subject: Aria’s loose tooth
Just the other night I was helping Aria brush her teeth. We have to be very careful and diligent with her dental care because the chemotherapy can have some pretty adverse effects if we're not on top it. She is seeing a dentist every 3 months and so far things are going well. The other night, however, I was brushing her lower teeth and she uttered suddenly, "Ouch!" pulling her body from me. "You hurt my tooth Mama!" she scolded. I thought this was weird because I didn't do anything unusual, so I took a look, thinking maybe she was beginning to develop a little sore. It never occurred to me that it would be something as normal as a loose tooth! But I noticed that one of her teeth was bent backward ever so slightly and so I wiggled it! Oh, that magical breath-taking moment! "Aria! You have a loose tooth!" I exclaimed. "I do? I have a loose tooth? The tooth fairy is gonna come? I have a loose tooth! I have a loose tooth! I have a loose tooth!" She sang over and over while doing a little twirlie dance!

You know, this very ordinary thing, a kid about to lose a tooth, has become quite extraordinary to me. It makes me think about the sentiment, "This kind of thing sure does make you appreciate the little things in life." or often said another way, "It makes you grateful for every day." The 'it' and the 'thing' to which I think people are referring are ideas that include the fragility of life, the uncertainty, the idea that we all get to live to old age as being nothing more than an illusion, the realization that we are all destined to die one day and we really don't know when that day will come. The appreciation and the gratitude one feels for these simple things are rather self-explanatory and yet somewhat vague because few bother to identify what the simple thing is, and why its meaning has become so powerful.

For us, Aria gets to have a loose tooth. She has survived a devastating diagnosis long enough to have a loose tooth. The next step will be when it finally falls out and we'll celebrate that too. For me, this little thing is enormous. It has become something sacred because I know there are families all over the world who are grieving that their child won't be able to experience this kind of simple thing that most kids experience and I know there are many others who are celebrating in a similar way as we are.

This is how the vagueness of that sentiment that we all know and understand has become real and tangible for me. It is a thought that transcends things like, race, religion and politics that constantly attempt to divide us as human beings and crush the sacredness defining our humanity. It's sad that it has taken me such a personal and life-altering experience to really grasp this idea but perhaps that's the point. Perhaps that's the lesson embedded in popular ideas encouraging simplicity, living in the moment and enjoying and cherishing those simple little things of life. I think everyone, everywhere, has hardship in which to contend. Some may view it as a matter of degree. I find those labels less and less helpful because the point is how one chooses to address the hardship, which is a calling to awaken to what's important and to banish what isn't.

Aria has a loose tooth, a simple little thing that has become profoundly meaningful in the scope of something much bigger. ~j

March 21 2009 Hospital experience...a summary of sorts

March 21, 2009
Subject: March Hospital Experience

Every hospital stay stirs a cauldron of emotion within me that for the past few months has been pleasantly simmering untouched. Driving to the hospital forces me to face all the contents of this bubbling brew that can splatter and burn with shocking surprise. It is never an easy concoction to sample.

Reo asked that we park on the pink level in the parking garage--Aria's favorite. It is the top level so we drive an upward spiral to get there past a seemingly endless display of aligned cars. It is numbing scenery, desensitizing the mind from wondering, "Who are all these people? What is their story?" Car after car is driven by someone with a story some of whom intersect with us and others we’ll never know. As I drive by these cars, they become like prayer beads calming me and bringing me to mindfulness. I find myself humbled by what they represent and I enter the hospital knowing that I am on sacred ground.

We arrive on the oncology ward and it is bright and cheerful. I'm light and jovial. Aria is thrilled to see us. Her hospital room is void of any personal touch. There are no toys, no clothes scattered, no extra pillows or blankets, no comforts of home to speak of. It feels temporary and I'm pleased. I convince myself that this really is just a 'blip' in the road and we'll be discharged before we know it. I successfully suppress any and all voices trying to convince me otherwise and I'm fully aware of my actions and can't figure out why I'm not being more open.

Doc is tired. He's been up since 3 30 am and it is just a little before 10 am. He's breathed several hours of hospital air and environment and there's just something about it that drains energy. Doc needed to go home for some fresh air, over-night clothes and supplies. We were fully stocked with an impressive array of movies, so we were settling in for the day. I encouraged Doc to go home and take it easy and come back 'whenever.' I really meant it too, or so I thought.

I had also been up since 3 30 am but my fatigue was different. It wasn't the hospital depleting tired that I felt but rather the weariness caused by restlessness. I couldn't get comfortable. I didn't know to do with myself. I tried to sew, to read, to write, and nothing seemed to satisfy so I sat and watched the television with the kids allowing my mind to wander in and out of different kinds of fantasy. I kept imagining being able to go home in the morning. Aria was in good spirits and it didn't seem plausible that we'd need to stay any longer than the weekend. I knew I was resisting what might be. I knew I was not surrendering to 'what is.' This is a difficult process and I seem unable to simply pick up where we left off. Instead, I have to regurgitate bits and pieces of old processing throwing them into the mix of what is new now. This is the challenge of living presently. However, it is a call to pay attention to thoughts and feelings that surface and dictate behavior. I started to take deep breaths of hospital air and I was calming down.

It was late morning and Aria's nurse came in to check on her after I had called because she felt warm to me. This, too, stirs up some funny emotions. I get tempted to doubt myself and dismiss my observations as being paranoid and over-reactive. I'm also tempted to apologize for being this way but if there's one thing I've learned its that it is far better to be a little paranoid and over-protective in the realm of the hospital world than to sit back and let things go unsaid. I've said this repeatedly but fear is a powerful force that must constantly be confronted and challenged. We know this to be true but so often we don't follow through.

Aria's nurse, Susan, is one of our favorites. She and I talk about MaryJanesFarm magazine, about organic food, and about simple living. I adore this person and I trust her completely. I also feel safe being vulnerable with her, which is no small thing. Believe me, it is one thing to read those words or even write them, but it is something entirely different to actually give voice to them to another person in the midst of feeling it. Susan has a gentle smile, the voice of experience, and a raging sense of confidence I admire and appreciate a great deal. I tell her that I'm nervous, that I don't like being here and can't wait to go home despite knowing that Aria is safe and in the right place and receiving wonderful care. I tell her I hate every minute of it and it brings me back 14 months and stirs up all kinds of memories that have yet to fade. I tell her that I'm restless and worried and need some reassurance. I tell her that I'm struggling with letting it be what it is because all I want is for this experience to be something else—anything else. She smiles at me and tells me, "We haven't seen you guys in a really long time." I think to myself, "That is quite a perspective. From her view, within the world of oncology, 3 1/2 months is a really long time." She continues, "Aria is doing so well and this kind of thing is unfortunately to be expected. But let's take her temperature and see what's going on. You have a sense about her and we pay attention to that." I wanted to cry because even if I was being over-the-top paranoid and nervous, she acknowledged that I know my daughter. I felt validated and understood and although these things are often completely unimportant to me, they become exceedingly important in moments of true insecurity and doubt. I've learned that the remedy to a lack of confidence is trust in others. So often we seek from others what we think is lacking in ourselves and in the process we fail to trust that others speak the truth and so their validations and praise do not penetrate what we guard so fiercely. Aria's cancer forced me to relinquish all my shields and weapons that guarded what I thought was weakness. I've discovered strength masked by flaw's deception and I know whatever limits I possess are merely triumphs awaiting transcendence.

Susan tells me that Aria's temperature is 102.3. I begin to panic a little because I allow the reality of this news to sink in. I feel as if my eyes are bulging getting bigger by the minute. Susan excuses herself to get some tylenol for Aria. I begin to pace waiting for her all the while wondering if I should call Doc. I don't want to bother him if he's sleeping but I'm pretty certain he'd want to know that she has a fever. I begin to wrestle with the idea of having to stay for several days and I'm saddened and anxious about that. Susan comes back and I tell her, sputtering, "102.3 is pretty high isn't it?" Susan shrugs her shoulders nonchalantly and with a flip of her wrist says, "Oh it's not that bad." I'm instantly put at ease. She gives Aria her medicine and Aria begins to gag. The next thing I know Aria has vomited the entire contents of her stomach in the cover of her lunch plate that Susan grabbed with hyper-speed. I think I was sitting down watching this happen as if in complete disbelief. I can't remember. I do remember getting Aria a cold damp cloth and wiping her mouth and face when suddenly the movie character Lt. Dan from Forrest Gump came into my mind.

The scene that began to play features an enraged Lt. Dan hanging from the crow's nest of a shrimpin' boat in the middle of a wildly savage hurricane. We hear him and watch him wondering if he's gone completely mad. He screams, "YOU CALL THIS A STORM?!!" which is followed by a deranged sort of laugh. It occurred to me that this is exactly how I view Susan. She has this crazy level of confidence and experience dealing with oncology patients that I could almost hear her say, "YOU CALL THIS A FEVER?!" I burst out laughing because that really is the impression she gives me. It's like she enters the room with this attitude of "BRING IT ON!! GIVE ME SOMETHING I'VE NEVER SEEN BEFORE!" I had to tell her. So I said, "Susan, it finally occurred to me who you remind me of." She was in the bathroom flushing Aria's vomit and I could hear her giggling and she said, "Oh Yeah? Who?" "Well," I begin, "have you ever seen the movie Forrest Gump?" "Yeah sure" she tells me as she walks toward Aria's bed. "Well, you remind me of Lt. Dan only without all the anger!" She smiled and laughed while I continued to explain the scene and making my comparison. She surprised me, though, when she said, "Oh, I've got anger. I've got lots of anger. But, I'm working on it."

I asked her if she wanted to tell me about her anger because this was something I would never have sensed. She told me that she's been an oncology nurse for 30 years and she still can't make heads or tails of the suffering she sees day in and day out. She tells me that she's angry about how unfair it all is, how there are simply no answers, no reasons, no justifications... She's quiet and reflective. I say, "There just is." She looks at me and says, "Exactly." I mentioned my little friend who died just before Christmas. I said something like, "Her suffering and experience seems so completely pointless and yet at the same time profoundly meaningful." Susan said, "Exactly. I remember seeing her about 6 months before she died thinking it would be any time. Well, she lived 6 more months filling that time with incredible moments, creating memories that will sustain her family forever." We nodded at one another and bowed our heads honoring this brilliant and magnificent young soul. Susan then said, "That is not going to be your fate!" I was very teary and told her, "I sure hope not, but it will be what it will be." Susan nodded silent understanding and left the room.

I called Doc and told him what happened. I was nervous. I was upset. Was Aria's vomit session just the beginning of something new and different or was the medication administered too quickly so she gagged? I didn't know. What's worse is that I wanted Doc to be home and getting some things done but I also wanted him with us. I let him know that we were fine but he could hear in my voice that I was uptight. I didn't want to convey how conflicted I felt and tried to tell him so but unfortunately, what I communicated was ambivalence, murkiness and insincerity. Doc didn't know what to do. If he stayed at home and took care of his needs, I'd be sitting in the hospital anxious waiting for his return. If he left straight away then he wouldn't get his much needed and deserved break. He told me that he would finish up a few things and be on his way. I heard him say that he'd be back at the hospital around noon. When 12 30 rolled around I called him wondering where he was. Anxiety was dictating my behavior and I couldn't seem to rein it in. What's worse is that I was oblivious to the its heightened degree. Doc assured me that he was on his way and when he came into the room, we were all so relieved to see him. But, Doc was not happy with me. I was sunken.

Doc told me that we needed to work on our communication and that I was saying one thing but was really saying something else. It was really hard to hear that. I didn't realize I was so conflicted, but the truth is, he was right. I told him that when Aria spiked her fever and vomited I panicked and didn't know what to think or do. Doc looked at me puzzled and said, "Honey, that kind of thing is to be expected. That's why we're here." It occurred to me in that moment just how deep my denial went. I didn't expect Aria to have fluctuating temperatures. I didn't expect her to vomit. I didn't expect her to be sick. I expected her to be in some sort of holding pattern and she'd be discharged in the morning. Denial is powerfully insidious.

Doc and I had a wonderful conversation about communication. We talked about our needs and about how we could finesse our strategy to make sure that we were always on the same page. Lack of communication or miscommunication in this kind of setting adds insult to injury. It is plenty stressful enough without the excitement of misunderstandings to make things ridiculously difficult. I told Doc that I thought I heard him say that he'd be here around noon. He told me that he never said that despite the fact that I'm certain I heard it. This is where things could get really sticky and I imagine you can almost see how this could play out. We are both stressed and sleep deprived and we are both convinced of what we know we either heard or said. I heard Doc tell me that he'd back at noon but he denies it. Do I get angry and choose not to believe him or do I admit that in my stress and anxiety it is possible that I heard something that wasn't actually said? I paused to take a deep breath and I remember the most important thing and that is that Doc is on my side. He is not a foe. I humbly admit that I'm stressed and I apologize that in my stress I wasn't more clear. He wraps me in his arms and hugs me for a long, long time. He tells me in a soothing voice that we are both exhausted and stressed. He reassures me that he isn't angry or disappointed, that he simply wants to work on communication so we both can function with greater ease. My dad once said that although Doc is behind the scenes, he is the rock, the seer and the foundation. This is very true. Doc is the source from which much of my energy is drawn.

We had a wonderful time with the kids. Aria was feeling better and had perked up. Doc stayed for a little while and then left again to do some work at his office anticipating that we'd be staying for a few days. That idea was still slowly sinking in for me. It was a quiet afternoon. We left early in the evening and as I said good night to Doc and Aria I found myself determined to adjust my attitude to better enable me to go where this particular ride intended to take me.

Aria's temperature continued to fluctuate throughout the night but by Sunday morning it had stabilized and was normal. I convinced myself that we'd be staying another night but I just didn't know. It's the not knowing-- the maybe's that are so hard to deal with. 'You might be able to go home tomorrow. We'll wait and see.' That kind of thing keeps me on the edge of my seat constantly grappling with a nugget of hope dangling in front of me. I hate it and yet want to know. Something is better than nothing even if it's only a dangling nugget.

Doc and I agreed that the kids and I would spend the morning at home having quiet time so Aria could rest before we arrived. She was craving her favorite Chinese food and that restaurant didn't open until 11 am. We decided that I'd order take-out and be up at the hospital between 12 and 12 30. These specifics become really important. This is the communication I was talking about. The hospital is such a restless environment that knowing what to anticipate becomes ever more meaningful. Knowing when we're planning to arrive so he can anticipate his departure to go do what he needs to do helps. It breaks up the monotony and gives him something to look forward to.

Prior to leaving, I decided we all needed a little cheering up. I asked Reo if he wanted to dress up in a costume and of course he was all over it and quickly put on his imperial storm trooper costume. Rianna wanted to be a tiger and I was a spring flower. I brought some extra costume type things to play with and we were off to the hospital. When we arrived Aria was resting but she was cheerful and happy to see us. She was attached to her IV pole so getting around is always tricky and stressful, particularly with Rianna around. We brought more movies to add to the already swelling collection and we settled in for a day of 'come what may.' We feasted on delicious Chinese food; shrimp circles and noodles to be precise and enjoyed ourselves. Doc mentioned that the doctor on call said that we might be able to go home later in the evening if Aria's temperature remained stable. Her ANC was back up so things were improving and the doctor thought that with a big antibiotic on board, we wouldn't need to stick around and we could take care of things at home. This was grand news and we were rejoicing over how short our stay might end up being at the same time cautious knowing anything can happen.

As the afternoon rolled on, Aria became increasingly sensitive. She complained that her eyes were 'full of tears' and she wanted the shades and curtains drawn. This was something new so I tried to accommodate her as best as I could. Naturally the minute I touched the metal strings that control the plastic slatted window shades, Rianna made a beeline to this new toy. Bang-Slash-Spish-Splat went the shades. She grabbed several of these stiffened fettuccini-like slats and raked them back and forth, twisting and turning them creating all kinds of light sprays and shadows. It was all rather dizzying and completely annoying to Aria. Rianna, in her classically 2 year old way, became increasingly more annoying the more I attempted to make her stop. She responds so much better to being ignored, distracted or redirected than being told a direct 'no.' I know this, but the creative energy it sometimes requires was beyond me. I resorted to just ignoring her and pulling the curtain around Aria's bed, which created a dark and somber space, doing nothing to alleviate the stress I was feeling about her.

Another favorite nurse, Tammy, came by to say hello. She's another MaryJane's Farmgirl and a trusted friend. She and I are entirely on the same wave-length and all I need to do is look at her and she knows exactly what to say to me. Tammy is soft-spoken, direct, experienced, bright, cheerful and down-home goodness! It was mid-day and I mentioned to her that Aria felt warm again. Tammy decided to go ahead and check her temperature. When she was done, she looked at me wide-eyed and just showed me the thermometer monitor, which read 104.6. My heart began to race. I was stunned. Aria felt warm but she certainly didn't feel that warm. Tammy was calm but focused. She excused herself to get some more tylenol and prepare Aria for another blood draw so cultures could be grown. When she returned, I noticed that she was examining Aria's hands and feet sort of pinching them. I asked what she doing and she replied that she was checking.....suddenly her voice faded in my head for some reason and then all I heard was, "Sepsis, do you know what that is?" I told her, "ok. I'm starting to freak out because I do know what sepsis is." I mentioned the tragic death of a brazilian model who died from sepsis recently. Tammy looked into my eyes and said, "Julia, we are no where near that! But we need to monitor her and make sure we never even get close." ahhhhhhh deep breath. As Tammy was preparing and labeling the tubes for Aria's blood draw, I asked about the fever. I don't remember exactly what I said. I know I was trying not to completely freak out and scream, "Holy Shit!" I think I managed to utter something like, "Tammy, what's going on here? Do I need to start worrying? or....what are we doing?" Tammy smiled and stopped what she was doing. She looked directly in my eyes again and said, "This is what viruses do. This is a high fever but the tylenol will help. We're going to watch her very carefully."

I feel the need to say to you that I'm not an idiot. I know how viruses work, well sort of. But I tell you, throw a little cancer into the mix and the rules completely change. Aria has never had a temperature above 102, so 104+ was spooky. Once again, I found myself mentally rocking back and forth almost chanting "I hate this moment...I hate this moment....I hate this moment!" Back and forth, knowing she is receiving exceptional care but also knowing sometimes circumstances have a life of their own that is completely void of what makes sense.

Tammy started to flush Aria's central line so she could draw blood. She began telling me how amazed she is over how well Aria has done. I told her this was our 5th hospitalization in 14 months. Tammy looked at me over her shoulder and smiled. She said, "I know this hard to believe, but that is absolutely phenomenal. Really, Aria is doing amazingly well!" This was music to my ears. I've heard this several times from several people but hearing it from someone working in the trenches is powerful and that much more meaningful. It makes me want to know the stories of other people but I stop myself and ask, "What good would that do? Why do you want to know that? Do you want to compare your experience to theirs seeking further validation that things are good?" The answer to that is a hearty honest 'YES!' But I know it won't really help. I know that that sort of comparison reflects something within me that's hindering a greater sense of trust. I want to trust that when Tammy, or Susan, or Dr. Trobaugh say, "Aria is doing exceptionally well" that not only is it true, but sustaining and satisfying.

It is not surprising that Aria was uncomfortable. She was light sensitive and complained constantly about the brightness of the light making her eyes full of tears. I readjusted the shade slats that Rianna had managed to mangle and sat on Aria's bed wiping her forehead, cheeks, chin and neck with a cold cloth. She was BANG starting, BANG, to calm down, SPLAT, SPLISH, BANG and relax, BONK,SPLAT,SCRAPE,SPRISH..."Rianna!" I bark, "Would you quit doing that?" My voice was harsh and loud and both Aria and Rianna started to cry. Sigh. I was so pissed and irritated at this point that I continued telling Rianna,"no" while trying to reassure Aria. This is when Reo stepped into the picture and started mothering Rianna too. The poor thing was getting it from the both of us. So, what do I do? I started barking at Reo! "Reo would you quit.... just stop....no,honey, just leave it! leave it! Leave IT!" Man, I was tense. See? This is how it plays out. Finally after about 5 minutes of this nonsense I got my wits about me, got Aria calmed down, I gently told Reo that I'd handle it and I grabbed Rianna and threw her playfully over my shoulder twirling her around and around. She was completely distracted that the slats didn't become an issue again. Now, I wouldn't be honest if I didn't admit, that for Rianna the moment had changed and she was giggling and happy. For me? I was seething! My heart was pounding and I was irritated, but using my 8th grade acting class techniques, I was able to shuffle that away and successfully tame the situation. In no time, everyone was A.ok but I tell you, this part of the job is so exhausting!

I sat down with Rianna and we just played and giggled. It was so nice and I could feel the tension begin to peel away. Aria tried to settle in for a rest but we were just too noisy. I kept trying to quiet the kids but they were starting to get really bored. Reo complained and fussed that he wasn't allowed to go to the playroom that was right next door. I explained to him repeatedly that we were in isolation, but he simply did not understand that this was the hospital's policy and not mine. In his view, this was a punishment I was inflicting for some irrational reason. Poor guy. This went on for a few hours and then like magic, Doc came back!

Aria was dosing in and out and surfaced only slightly when Doc entered the room. He was so light and cheerful. I swear the sun came out the moment he came in! He had a sing-songy tone about him as he talked to Aria and began to tell her a story. He said in a whispery playful way, "Aria, I tried to tell them but they just wouldn't listen." I'm listening to him and have no idea what he's talking about. He continues, "I told them that there probably just wasn't going to be enough room in the bag but they insisted on jumping in!" Aria, baffled and staring, listened but didn't move. Doc lifts onto her hospital tray a large bulging canvas shopping bag. I can't stand it and ask, "What is it? Who jumped in there Dada?" Rianna is completely intrigued and hops onto Aria's bed to watch. Doc tells us, "Well, I basically had to tell the big ones and the little ones to stay home. They weren't too happy. But Aria, don't you worry, the big ones are taking good care of the little ones." I'm so itchy to peak and completely enthralled that I'm about to burst.

Doc hunches over slightly in a 'I'm gonna sneak up on you kind of way.' He's smiling ear to ear and his enthusiasm and joy take over the room completely. He reaches into the bag and pulls out one of Aria's 'my little pony' dolls. He says, while making the pony dance and fly and flip, "It's Pinky Pie! She's so happy to see you!" Rianna is bouncing on the beg squealing, "Ha-Ha's, Ha-Ha's." Doc continues to pull out ponies. I hear him say, "They were so worried about you, Aria. They just had to come and see you! Oh look it's Wysteria and Minty and Rainbow Dash!" I was completely choked up. This was just the most beautiful and thoughtful gesture. Doc lined up dozens of Aria's ponies on her tray so they were all facing her, watching her. Rianna helped herself to a couple and busied herself with them. Aria had not moved. She didn't reach for them. She made a feeble attempt to smile. However, she closed her eyes and settled down. I could almost see her body melt into the bed. She was completely relaxed for what might have been the first time all day long. Her dada was back. He brought her all of her beloved pony friends. Suddenly, everything was right in Aria's world.

I knew that she was desperate for a nap. I knew it wasn't going to happen if we stuck around. I told Doc that I'd be taking the kids home soon so Aria could have a good long rest. He agreed and we began to pack up for home. Reo mentioned wanting to play in the playroom again and I had to tell him for what seemed like the millionth time that we were in isolation and not allowed to play there. He threw a mild tantrum and I had to just let it go. I couldn't make him understand why we couldn't play there. It was unfair. It wasn't right to use his words but how does one explain to a 7 year old that fair and unfair don't really exist? How do I explain to him, "Honey, the sooner you accept, there just is, the happier you'll be?" I finally told him that we were not allowed to play there and that if he stayed stuck in the problem of that, then he'd miss discovering some solutions. "How do we solve the problem Reo? What suggestions can you make?" I asked him. He replied, "I don't know Mama, I just feel angry about it." I said, "Me, too. Let's go think about it some more!" He smiled and was ready to take off.

We were driving home and I was thinking about being in isolation. I don't know if I'll be able to explain it to you but every time that sign has been taped to our door alerting people of contact precautions and such I take it personally. I know. It is completely nuts but there it is, I do. It isn't anything major, just a little splinter like insult to my sense of well-being. I was driving along trying to figure out why on earth I see that sign on the door and the precautions trolley filled with gowns, gloves, and masks parked just outside and I become disheartened. "What is the big deal?" I ask myself. I thoroughly understand why its there. It isn't anything personal. It isn't Aria's fault she's sick and precautions have to be taken to protect her and everyone else. I get it, so why do I still sink a little every time? Reo interrupts my thought, "Hey Mom, I think I came up with a good idea for the playroom." "Oh yeah honey? What is it?" I ask. "Well, " he begins, "we can go there tomorrow and maybe tomorrow we can play!" "Reo!" I say with enthusiasm, "What a great idea! We'll just go check it out tomorrow. If the isolation sign is off the door we can go play, but if its still there we can just play in our room with Aria! What a great idea!" Reo grumbles softly and gravely, "No Mama, that's not my idea. We need to play in the playroom tomorrow." I sighed. I made sure it was loud enough for him to hear. I didn't have it in me to try explore ways to explain why we were in isolation nor did I have the energy to take on this battle. I let it go with a decisive, "Reo, let's just see what tomorrow brings."

We were nearing the farm and suddenly the proverbial light bulb went off. Poof! The isolation and precaution isn't just representative of the hospital environment. It represents the cancer experience in general. We are isolated. People fear our experience. People want to know what we're going through and some can handle it better than others. Some can only tolerate so much and their fears inhibit them from taking in any more. I understand completely and this doesn't apply only to us. It is cancer in general. People are cautious. They don't know what to say and want to be comforting. Often I'm told, "I just don't want to say the wrong thing." Fear is such a menace. People go on with their lives and wonder about us. They want to call but fear being intrusive or bothersome so they're left with questions and wonderment. There's insecurity on my part that feeds the isolation, too. I worry, "Geez, am I capable of talking about anything else?" It's like being back in high school and completely smitten and consumed by a boyfriend. Girlfriends become intolerant, annoyed and jealous. Soon, they are less engaging and friendships become like hairline fractures needing care and time to mend. I worry that I dominate the conversations, that cancer is the only thing discussed. I worry that people are bored with the topic not because they don't care but because they're ready to move on. I know this is a projection on some level. I want to move on. I want to change the subject and talk and think about other things. It isn't time for me to do that yet and so I must remain steadfast but sometimes I'm self-conscious and awkward, so I withdraw. I think I may even have an easier time than a lot of other people because I write it about, processing it in the moment. It has been enormously helpful to me but I wouldn't be honest if I didn't admit that sometimes it is one more thing on a heap of 'one more things' to feel a little alone.

Monday morning began with Reo complaining that his leg, which he bruised from tripping up the stairs, was "far too injured' to go to school. "Besides Mama," as he pleaded his case, "Aria needs me at the hospital." I told him, "Yes she does and we'll call your school and you can come hang out at the hospital." "Yeah," he replied, "and I can play in the playroom!" I know, you're groaning for me aren't you? I took a deep breath and tried again to explain it to him. Reo was absolutely convinced that my not letting him play in the playroom was my doing, my fault. He would not process things like, "Hospital rules or Dr. Trobaugh said so, or the sign says so." Nothing. It was entirely my fault and he was digging in his heels. I ended the battle not as creatively as I would have liked but with something to the effect of, "Reo, you are refusing to listen. I can't make you understand what you are not willing to hear. So, you have a choice to make. You can either not have what you want, which is to play in the playroom and stay stuck in your anger and sadness OR you can work the problem and think of a solution. This would mean that you'd have to think of something else to do." This was way too much information for his angry little mind and he simply retorted a blunt, "No Mama." "Suit yourself!" I told him and we were off!

When we entered Aria's room, she was up at the window playing with her ponies. This was more brilliant to me than a sunrise! Aria's ANC had jumped to 400+ that morning. She didn't have a fever and Dr. Trobaugh was very pleased with her progress and said we could go home with a big gun antibiotic on board. This was so wonderful, as you can well imagine but it was also such an enormous head-shaking disconnect. Less than 24 hours earlier, Aria had a very high fever and now we were heading home. I was delighted and terrified. I was relieved yet worried. I can't tell you how hard it is for me to feel like I can settle in to anything. Things change so quickly that just when I surrender to one thing, something changes and I have to process that. I don't think of myself as inflexible and I try to be open and accepting but I'm learning that the resilience required here is great.

We were getting ready to leave, packing up our things and taking a load or 2 to the car but hospital time is its own thing. We didn't actually sign the discharge papers until well after 2 30 even though we received the go ahead to leave earlier in the morning. I wanted to leave and I didn't. I trusted that everything was fine and yet I wasn't so certain. It was a bit thorny to be truly jubilant. The caution was just too great. I dare ask, how does one find peace in this kind of situation? Can one truly feel relief? Again, I'm reminded to be present to these moments, to these feelings despite having an inordinate inability to rest easy in them. These are such prickly companions and they are constant.

Reo noticed that we were getting ready to leave and he was devastated that he never got to play in the playroom. I was devastated for him but had to be firm. As luck would have it, Krista came by to say "See Ya tomorrow!" and I asked her if Reo would be allowed to play in the playroom on the 4th floor. It is a playroom only for siblings. Krista left to check and came back with a thumbs up. Reo was sulking in the corner when I asked him if he wanted to go with Krista to the 4th floor. Well, you would have thought the child had become a rocket! He was up with his shoes on, ready to go and out the door before I could say, "See ya!" This was a true moment of relief. I was so happy for him. He needed a change of scenery so desperately. He needed something to call his own. He needed to be with Aria but being there is very hard and even more so when one is denied simple pleasures. He was able to play for an hour and when I went to get him he had been playing with dinosaurs and army men creating a world where people were victims, eaten and pulverized right and left but they were also fighters. This experience is a lot for a little 7 year old boy and I'm amazed at how well he takes it all in stride. He has far more grace than I and I admire him a great deal.

As we were leaving, I noticed a family playing in the playroom. I've heard about this family. The little boy is 4 years old and he also has ALL. They have been in the hospital for going on 9 weeks now. 9 weeks! I simply do not know how to process that. As I walked by, I bowed my head to honor them. It was 2 nights and 3 days for us this time. I'm tempted to entertain thoughts like, "I hope we never have to experience anything like that." But I know how foolish that is. Hope doesn't work that way. If we have to endure a 9 week hospital stay for whatever reason, we would. I have no idea how we would, but I know we would. 'Hope' grasping thoughts like that yank me out of the moment and as we were descending to the pink level in the parking garage, I found a moment of silence to be grateful, to recognize our luck. I can't make heads or tails of this experience a lot of the time. I'm simply learning to ride the spoon that stirs the cauldron of myself without being scalded. As we drive away, I once again notice car after car and I wonder, "What is their story?"
~j