Aria and Kitties

September 21, 2008
Subject: Aria and kitty cats

Before I launch into yet another tale about the farm in general and kitty cats in particular, let me give you an update about Aria and her clinic visit on Friday September 12, 2008. This appointment was only a finger poke and an evaluation with her physical therapist. She has been doing exceptionally well so this visit was completely relaxed and almost enjoyable. You may recall that 2 weeks before I had talked with a mother whose son was scheduled to finish his 3 1/2 year chemo treatment this day and I was hoping to run into her so I could congratulate them. I have been thinking about her ever since feeling so thankful for having met her and having had such a genuine conversation. I was eager to thank her personally and express my gratitude.

The finger poke went without incident. Aria's beloved Krista was there playing the guitar for her and that exchange makes everything right in Aria's universe. I was all set to take off since we didn't need to wait around for results and I thought this would be a nice in-and-out kind of thing. Aria was downtrodden thinking that she wouldn't be able to play with the Playskool farm/barn set with Krista, who, as you can imagine probably had far more important things to do than this, but humored Aria completely. I allowed Aria to play for 10 minutes or so and just as we were packing up to leave, in walked the mother I previously mentioned and her son. I nearly knocked her over with my enthusiastic leap out of my chair to greet her. I breathlessly rushed into thanking her for our conversation 2 weeks earlier telling her how much it meant to me. I congratulated them on a huge day. The end of chemo! The end! Wow. I was amazed and all smiles. She, on the other hand, was completely reserved and guarded.

She smiled and thanked me and told me she felt relieved that I hadn't misunderstood her perspective. She worried that she was too negative and gloomy. I reassured her that I was completely taken with her and felt like I had finally met someone willing to refuse to wear the mask of bravado and optimism instead of a genuine face of realism. It is very easy to be positive about the prognosis for her son and for Aria but at the same time the process is a grueling one and the bubble in which we once lived that was made up only of fictitious worry, namely "what if something happened to one of my kids" has been shattered. We are now learning to live among those shards and sometimes it is very painful. That is the reality. It is an almost balanced mix of both positive and negative things and this mother was so gracious to share with me what these 2 sides mean to her. She mentioned that she is thrilled about the end of this treatment and at the same time dreading "what now?" She admitted that she is scared to death about having him off his chemo knowing that when his body was left to its own devices, it developed leukemia. She is petrified of a recurrence and knows that it would more than likely mean a bone marrow transplant. I was fascinated listening to her. One minute she was saying, "I know, this is so great! When we're done we'll have to go and get a cake or something and celebrate!" which was soon followed with, "I'm so glad we're still going to have to come every month for follow-up because, God, what if it comes back? That means we move for 6 months to Seattle for a bone marrow transplant? I don't have 6 months for that! I don't want to do that!" It was agonizing listening to her. This is the next chapter for her and I instantly understood that all she wants to do is read ahead and know what their future holds. It was all I could to stand before her when all I wanted to do was kneel at her feet and thank her. She is like an emotional portal to what my future is going to be like. She is mentoring me and I am paying very close attention.

Her conflicted emotions are significant and completely understandable and yet you'd be so surprised by the kind of messages bombarding our psyches. "Aren't you happy you're all done? You should be so thrilled! Why aren't you jumping up and down? You're all done!" She told me these were the kinds of things she was hearing constantly and it was driving her nuts and filling her with horrible guilt. She wants to be happy, oh so happy, but she's frightened. She wants to think that this is it and that they're in the clear but she knows better. She wants to tell her family and her friends and everyone else overflowing with wonderful intentions how she really feels but she doesn't. She fears that it would leave the wrong impression and she knows that they may not understand. She doesn't expect them to and so she tries to absorb their enthusiasm but the armor she has had to wear these 3 1/2 years doesn't come off that easily and has become a second skin. She isn't ready to shed it yet. I listen intently taking in every single word, every bit of intonation, every emotion, every eye blink, and every breath. I want to remember this exchange for a long, long time. I know it will sustain me.

I was teary listening to her and feeling equally conflicted. I'm so happy for her and at the same time I completely understand her fears and how they can gobble up her joy. I want to be consoling. I want her pain to end. I want the light at the end of this tunnel to last and last and last. I see so clearly that one chapter has ended but the next chapter, prithee, what will it tell? I take a deep breath and I put my hands on her shoulders and I said, "I am celebrating you and your son and your family today, in this moment, right now. It is an enormous moment and I am thrilled that you get to experience it! As far as tomorrow is concerned, I'll simply continue to hold you in the light to face what you have to." She smiled and whispered an emotional, "Thanks." We had to leave and so we did. I gave her my contact information and I hope this is the beginning of a friendship.

I have said this many, many times, but clinic no matter how long or short is always a profound experience.

Aria was oblivious to this exchange, as well she ought to be and we went along with our day. We spend many afternoons outside playing in our large sand pile. The kids like nothing better than to strip naked and run frigid well water onto the sand creating puddles for hours and hours of blissful muddy amusement. We had one incident maybe a week or so ago that is probably rather unique to farm living, although not unheard of in suburban settings. Like many farms all over, we have and have had an array of cats. Admittedly, we are not the most conscientious cat owners because we don't spay or neuter our kitties on a regular basis so we have had several litters of kittens. That, and we do little to protect them from the elements that constantly threaten them, namely our dogs, coyotes, hawks, snakes and so forth. Cats don't live long out here and frankly a 3 year life expectancy is considerable. When we first moved here, I remember meeting a neighbor who simply numbered her cats, which at the time I thought was strange and a little cold. I completely understand her reasoning now and we barely name them at all. We've had up to 14 kitties at one time and until very recently we got down to 3. Such is life and death on a farm. I know that sounds rather curt but it is the truth.

The 3 kitties remaining were beginning to go outside using a cat door that we have fixed into a window leading to our root cellar/basement. I hadn't spent much time with these kitties for the past few months because most of my time has been devoted to Aria. Needless to say, they are shy of me, skittish and a little bit wild. I think this suits them and their survival instincts that they'll need in abundance if they intend to stick around for very long. Don't be fooled, however, that sentiment is nothing but a pathetic excuse to curb my guilt at having neglected them. I wouldn't be honest if I didn't admit that this is not the way I normally feel about our cats. They are members of our family and I adore them and feel great sorrow when they don't make it. These kitties were a little different and were part of a long line of kittens that I unfortunately was not able to befriend very well. It is fair to say that I didn't feel strong attachments to them but I wouldn't go so far as to say that I didn't care whether they made it or not. I do care.

One day, I was hanging laundry on the line and the kids were playing right along with me. They love to run through the sheets and underneath the hanging clothes, letting pant legs, skirts and sleeves drape over their faces like ghostly shrouds. I call them Casper and they have no idea what I'm talking about and don't find it funny in the least. Not only that, but I interrupt their game, which is highly inappropriate. Regardless, this is one of my favorite chores and everyone seems to enjoy it. At one point they tired of their game and Reo decided it would be good fun to whack crabapples off the tree using a large spear like stick. Rianna thought it was great fun chasing after falling crabapples and Aria was interested in 2 kitties that were literally hanging to the upper most branches of the tree. Aria began whistling to them, encouraging them to come down to 'safety.' This got the attention of the dogs and 4 of our 5 began circling the tree. Do I need to finish the story? Reo joined in too and was cooing at them with baby-like goo-goo words of tenderness and encouragement trying to get them out of that tree to someplace safer. Rianna was under the tree pointing and screaming at them. Did I mention that the dogs were circling like earth-bound vultures? I was still hanging clothes on the line and wasn't all that concerned.

Suddenly, the kids started screaming, "Mama, Buddy's got a kitty! Buddy's got a kitty!" I could hear the cat wailing as Buddy was running toward the playground. I couldn't believe it! The stupid cat climbed down that tree into the jaws of one of those dogs? It was incredible. Buddy dropped the kitty to the ground, who immediately began hissing, spitting and clawing at anything that moved. My first thought was, "This thing is gonna make it!" He was wild and tough. I ran over and got in between Buddy and the cat. Meanwhile, my other 2 dopey large dogs were getting into pack mentality and starting to skulk around the poor little thing. I went to grab it by the scruff of its neck, so as to keep his claws out and away from me and keep him high enough in the air that the dogs wouldn't torment him any more. Unfortunately, he lunged at me giving me a mighty scratch and this set off the dogs. In a blink of an eye Buddy had the cat in his jaws and was running full steam into the pasture. I picked up Rianna and Aria and ran after him. None of us had shoes on, which is why I was carrying the girls, and the pasture is pokey-pokey-pokey this time of year. Reo was walking slowly behind to meet up with us. Buddy had set the cat down again who was swiping at him constantly. At one point, one of his claws nailed Buddy in the lip and he hung on for dear life. Buddy was enraged and in pain and grabbed the kitty again flinging him into the air. Tipper and Asia were right there teasing him, playing a twisted perversion of cat and mouse. Buddy grabbed the cat again and took off in the pasture closer to the playground. He held him in his mouth for a few more seconds and I noticed that the kitty was losing the fight. Buddy laid him down and walked away. That's what this dog does. He doesn't eat these kitties. He just kills them. It is some weird instinctual thing. The other dogs soon lost interest too but the kids and I were determined to stay with our friend until he died.

This cat was a fighter. He would not let me touch him let alone pick him up. So I sat down on the sun baked pokey ground with Rianna and Aria in my lap and Reo beside me. There we watched him take his final gasps. It is a strange experience and one I've witnessed a number of times. The kids were sober as I was talking them through the process. Aria asked, "Mama is he going to die?" to which I replied gently but gravely, "Aria, this kitty is already dying. We are watching him die and letting him know that he isn't alone." Reo tenderly added, "Ah, poor little guy. He was a good friend." Rianna pointed at the dying kitty and shrieked, "Meeeew!" We were startled when he started to choke, taking his final breaths. It was alarming and Reo took a step back, Aria gasped and I knew I had to come up with some kind of gentle explanation quick. "Look!" I said with excitement, "He's spitting out his spirit!" With that, our friend died. I couldn't believe I said it and what's more, I thought it rather clever. We all took turns saying good-bye and telling him to have fun in the Spirit World. Aria began to cry and I knew she needed a little more explanation. Reo, skipped back to the crabapple tree to resume his whacking game. It should be noted that in the commotion the other tree'd cat ran into the basement and to safety. Rianna amused herself in the sand pile, while Aria and I sat on my swing and discussed the matter. "Oh, Mama, I just feel so sad that he died. I'll never see him again. Will he be ok in the Spirit World?" I reassured her that he'd be more than ok in the Spirit World. As we swayed in the swing with the creak of an old branch as a soothing tune I told Aria, "When our friends die, we'll miss them and that is certainly something to be sad about. The Spirit World, however, is a place we all must visit in our own time." Aria interrupted and said, "But Mama, I don't want to die!" "Well not today!" I began, "but someday you'll die just like someday I'm going to die." "But Mama, I won't ever see you again!" I smiled at Aria and asked if she was ready to hear what I had to tell her. She gave me a whimpery, "uh-huh." "Aria, that's the thing about the Spirit World. The Spirit never dies. When I die, my Spirit will always be with you. Always." Aria paused for moment and said, "Just like Obi-wan!" then she recited, "Darth, if you strike me down, I shall become more powerful than you can imagine.....Luke! Trust the Force!" It was all I could do not to burst into a fit of giggles because she was dead serious and at the same time she was right on. I was thrilled and hugged her and said, "That's exactly right Aria. Luke was so sad to lose his friend until he realized that his spirit was always with him." Aria hugged me and climbed off my lap and raced to the laundry hanging on the line. I walked over to her so that I could finish the job when I noticed the most brilliant orange butterfly I had ever seen. I immediately called Reo and Aria over to look at it and I told them, "Look, our friend's spirit has hitched a ride on this butterfly to let us know that he's ok in the spirit world!" They looked at me disbelieving but smiling and in that moment, the butterfly flew away and so did the spirit our furry little friend.

The kids have witnessed several such deaths and it is always a story to be told again and again by Reo and an event to be processed by Aria. They view the same situation through very different lenses and I find it fascinating.

As I sit here typing, I'm almost out of breath thinking about the comings and goings of our days. They are still very simple, uncluttered and quiet but keep me, nevertheless, in almost constant wonderment about the cycles of life and death, letting go and welcoming, presence and impermanence. The things Life takes only to be replaced by something else. The hard-hitting curve balls Life throws one minute followed by tender feathery moments of equal significance in another. Everyday miracles like this keep me centered somehow or perhaps it is the desire to find balance in the illusion of these dualities that I seek for centering. I'm not certain, yet this is what I ponder these days. I suppose the easiest way to describe it is the constant fear I have of something happening to Aria, as if what has already happened isn't enough to satisfy the hunger of that particular anxiety. I fear something else. I can almost taste the dread it conjures. At the same time I sense the fear coming on, I'm learning to pause and to ask myself what exactly it is that I fear. I suppose when I peel enough layers that ultimate fear is still death. Clearly I have much work to do in order to rest easy and peacefully in the very opposite of my fear which is the strength I acquire when I think of "Come What May." I suppose I should sit with my own advice a little while longer and remember that Spirit lives forever. My Spirit dwells in so many respects in my children and I can see with greater clarity now how their Spirits have always dwelled in me. ~j

Sunday Polo Fun

September 10, 2008
Subject: Sunday Polo Fun

It has been a long time since we've had the emotional and physical well being to be out in public doing something truly fun. Until very recently, the public arena was always rather threatening; "What kind of germs are circulating out there ready to infect Aria? Will Aria have the stamina to deal with an exciting event? Do I have the wear to deal with it?" were common questions always circulating, inhibiting us from doing anything too strenuous or social. Being safe and quiet at home was always the more reasonable choice. However, Doc mentioned an advertisement for a polo-match/fundraiser that caught his attention in the newspaper several days ago. The fundraiser was in support of the Ronald McDonald house here in Spokane. He mentioned it to me and I was immediately all over the idea. Horses, polo ponies, hats, champagne, fund-raising, Ronald McDonald House, these were all things right up my alley. I got on the horn to order tickets a few days later and this is the story of those few days.

It is important to preface the story with a little word about the Ronald McDonald House, a place I knew only as the little plastic coin drops outside of the drive-through windows at McDonalds. I have to admit that I was skeptical about those coin drops and rather cynical too until I actually found myself using and needing the comforts that our local Ronald McDonald House provides. You see, on the inpatient oncology ward there is the Ronald McDonald Room, which looks and feels a lot like today's modern open kitchen plan that is attached to a family room with cozy comfortable furniture and a large television. This room is incredibly cheery with a 50's style table and chairs including a highchair and a fully stocked kitchen that patient's families can use to feel like they are in a home away from home while in middle of terrible crisis. We were able to store the many meals that people brought to us in the large refrigerator. We ordered take out a number of times and could save all of our left-over food to reheat in the microwave later. The kitchen was always stocked with milk, juice and sodas as well as yogurts, soups, bread, jams and jellies, peanut butter, popcorn, coffee, tea, utensils, and so on and so forth. All of these things were provided to us free of charge and I simply will not be able to articulate how important this room came to be for us. It was a place to depart and touch normal for a moment. It was a room where we found refuge from the many worries attempting to consume us. We were so grateful for everything that was there for our use and consumption whenever we needed it.

Imagine, for a moment, that you are hospitalized with your child and you cannot go home. That thought is almost impossible for me to grasp and for many families we've met, that has been their reality for not days at a time but for months at a time. The Ronald McDonald House for them is home away from home and I haven't met a single person yet who has not been completely and profoundly affected by the goodness and generosity found there. I have since learned that 60% of families utilizing the Ronald McDonald House are those families with babies in the Neonatal Intensive Care Unit (NICU). 30% of families are there with the oncology department and the remaining 10% represents a smattering of everything else that could affect the life of a child. These families, all of them, are stressed to the max and the Ronald McDonald House and those who work there provide comfort, compassion, understanding and a place for families to decompress and process in the comforts of home to face what they must. I know more about this place than I ever wanted to and it has been a privilege.

We are in a place in Aria's treatment, as I have said a number of times now, where we have space to think about others, and to do what little we can to improve the quality of life for those struggling as we did not so long ago. So about a week ago, I called the Spokane Polo Club to inquire about tickets. I was told to contact a woman named Miss Suzy and that phone call led me in a direction I never in my wildest imagination could have predicted. Miss Suzy and I chatted for a few minutes about the event before she mentioned that it was probably already sold out. I was thrilled to hear it and at the same time a little disappointed because it was something I was starting to think about and fantasize about. In truth, I was really thinking about the costume I wanted to make for the occasion. I was desperate to do something creative and this seemed like just the event to force open that part of myself that I had to shut down for several months.

Forgive me but I must digress a moment. Not too long ago, I finally saw the movie "Pride and Prejudice" starring Kierra Knightley and Matthew MacFayden. I was enraptured by it. I loved the book but the movie was an eye-full of costume mastery for those who are remotely interested in textiles, sewing, and fashion that has little to do with fad and frivolity but everything to do with classical style and personal expression. The costumes that Kierra Knightley's character wore blew my mind. I loved them; everything single thing about them; the hems lines, the waste bands, the sleeves, the back stitching and collar lines. They were artistic genius displayed in the fabric of a gown. So when Doc mentioned this polo match, I thought, "Ah Ha! The perfect venue for a classical gown with a somewhat modern appeal." I couldn't wait to get started!

So Suzy and I were chatting about the event and I let her know that I was happy to hear that it was more than likely sold out but that I would check the website just to be certain. It was then that I briefly mentioned that I knew virtually nothing about the Ronald McDonald House until Aria was diagnosed with leukemia. I started to say, "I have since met several fam.."
" WHAT? You have a daughter with cancer?" Suzy interrupted.
"Yes." I replied.
"Oh my God! I am so sorry to hear that. Well, you have just got to go to this thing. I mean really! You have got to be there."
Suzy was emphatic. I was stunned.
"Well, if the thing is sold out, then surely we can get on a waiting list for next year or something," I stammered.
"Oh, no! no! no!" Suzy began, "Listen, I'm on the board of this thing and I need to make a phone call. You guys are going to this thing. You have got to be there. Aria is why this place exists for families. I mean…She's the real deal!" Suzy pauses, "How's she doing? How are you doing?"
I told her a little more about Aria and I let her know that the other reason why we wanted to go was because Aria is just gaga about horses.
"Oh my! Well, I'm one of the organizers and I'll be playing in the polo tournament. So, you just have to bring her over to the ponies after the match so we can get her on a horse or something."
I was nearly in tears.
"Suzy,” pause, "You have no idea how much that would mean to Aria. That is something she'd remember forever!"
"Well, Julia, we just gotta get you on board here. Tell you what, let me make a phone call and I'll call you right back."

I hung up the phone and started to process the conversation a little. Suzy is a dynamo type person. She is high energy and bubbling with enthusiasm that is not only contagious but uplifting and inspiring. She told me of the variety of boards she serves and the things she does on her farm. She is a horse fanatic and a social mover and groover. I found myself saying, "Be careful Julia, she's got the kind of persuasion to rope you into volunteering for some cause or another!" I giggled at the thought because clearly being in her presence is akin to being in the middle of a refreshing breeze just primed to cleanse one of their complacency. It was here that I began to gather an image of her in my mind. She has a rough sounding voice; a rancher's voice and someone used to delegating duties and assigning chores. I pictured her in her late 50's maybe early 60's with a matronly build. I imagined her arms to be powerful and weathered. For some reason, I could not picture her as a polo player and wondered about that. It just didn't fit to put a stocky solid young grandma type up on a polo pony whacking a ball around an enormous field. The idea filled me with delight and I could hardly wait to meet her in person. In fact, I began entertaining the idea of crashing this party if I couldn't get tickets just so I could meet her.

Within 10 minutes, she called me back and had tickets for us. Not only that but she had us sitting in the premiere tent with a family whose young daughter is a leukemia survivor and would be singing the national anthem. She put me in contact with the director of the Ronald McDonald House who helped us sort out all the details. It is worth mentioning that the event was indeed sold out and these tickets were drummed up somewhere for us. Wednesday was the day that everything got sorted and the party was going to be Sunday afternoon. I had to get hopping if I wanted a fanciful gown and headpiece ready in time!

You have no idea how healing this process was for me. It was a complete departure from what has been haunting me for months. It was hours of light-hearted creative energy that came from somewhere other than me. I was able to sew 15 minutes here and there for 3 days and by Sunday morning I had only to hem my dress and my costume was complete. I'll say that I already had the pattern and a design that I had drawn to make the dress as well as all the fabric and notions. It came together like nothing else. It was nothing but a selfish enterprise and I indulged myself completely!

Sunday afternoon rolled around and the kids were beside themselves excited! Aria was buggy-eyed to see the horses and Reo was thrilled to find out what this thing was going to be like. I was completely decked out feeling fancy-free for the first time in so long. My spirit could not have been any higher. Doc was gussied up too. Rianna and Aria both wore dresses that I had made long before Aria got sick. It was festive. We were going out on the town as a family. We were celebrating the Ronald McDonald House and those families we knew staying there. We were celebrating Aria and rejoicing in her ability to resume normal activities that make the memories of childhood so fantastic. We were relishing this moment because we knew how monumental it was for our family.

When we arrived at the polo field it was lined with enormous white tents. Beautiful people were milling about. Horses were everywhere and the mood was joyous. Almost every woman I saw was wearing some kind of hat. The whole place was a kaleidoscope of color and carnival. We found our tent without any difficulty and were promptly greeted by the director of the Ronald McDonald House, who, by the way, knew Doc but didn't piece together the names until that morning. He asked if Reo and Aria would like to participate in one of the fundraising events, which would require them to go onto the field during the polo intermission and hold signs indicating the cost of housing a family for a period of time. Reo and Aria were thrilled to participate and held onto their signs the entire time! We had a marvelous lunch and I was able to wander around with Rianna in my arms, checking out the silent auction items and the artistry a few vendors were selling. I ran into the wife of a colleague of Doc's who I adore. She hadn't heard about Aria and was stunned, truly breathless, trying to process what we were going through. She said to me with tears welling in her eyes, "Julia, that is my worst nightmare. My greatest fear is that something is going to happen to one of my kids! Oh My God, just don't let anything happen to my kids!" I was nodding the entire time and telling her that this experience is still my biggest fear and nightmare. Sometimes it doesn't seem real and yet it is very real. One thing I had to tell her was that every person working with us has left me feeling like I'm a baby kitten or a dove. People have been so gentle, so easy-going, so careful in their care, so considerate and tender that it has been almost easy to allow them to take my hand and lead me wherever it is that I have to go. Her emotion was genuine and I so appreciated the connection we had. Before we parted, I mentioned that I spoke with Miss Suzy and asked if she would introduce us since Suzy mentioned that these families were very close. She told me that Suzy was probably getting ready for the polo match but that I shouldn't have any trouble finding her. In my mind I was thinking, "Yeah right, just look for the granny on the steed!" when my thought was interrupted by her comment, "Yeah, she's the gorgeous blonde one out there!" My mind was reeling. I heard myself silently mutter, "I'm sorry, did you just say, gorgeous blonde?" This was not computing with my weathered-matron-rancher. I was beside myself with intrigue!

We shared our table with a family from Idaho. Their daughter, when she was 4 years old was diagnosed with ALL. She is one of 5 children in her family and they found themselves living at the Ronald McDonald House for months at time. Her treatment was exactly like Aria's and lasted about 30 months. She has been in remission for 8 years now. Her mother was very sober telling me about her and their experience. She shook head often saying things like, "It is something I'll never forget. It has changed me forever." She looked at me with such compassion and understanding. I almost felt sorry for her because I'm certain that seeing me made her re-live some memories that she would just as soon like to forget. The young girl's grandparents were there and they were all such a delight! She took a genuine interest in each of the kids but especially Aria and wanted to know how she is and where she is in her treatment. The mother pulled me aside at one point and said, "Just a little information for the future. My daughter is absolutely fearless. She is willing to try anything and has more confidence than anyone I know. She remembers everything about her treatment and experience and it has made her exceptional." It was an emotional moment for the both of us. Here we were, 2 mothers, one with a daughter cured of her leukemia filled with relief and pride and another mother with a daughter in the early stages of treatment for leukemia looking at this little girl as living proof of our hope and our trust. I kept hearing those words, "living proof". She is "living proof" that Aria will one day be cured. I tell you, as fun as this party was, my emotions were just beneath the surface the entire time.

Just before the polo match started I noticed a woman on a horse standing alone looking around. Aria was eating her lunch so I wandered over there with Rianna. Phoebe was her name and she was perched upon a very handsome horse named Phantom. He had light blue eyes that were gorgeous but a little creepy and he was big! I don't know why she was there other than to act as patrol of some kind and she worked with search and rescue and may have been bringing awareness to that organization. I regret that I didn't ask her more questions but I was so captivated by the horse. I asked her if it would be possible for Aria to come over and say hello and pet him. Phoebe was thrilled to hear that I had a daughter interested in horses. She could think of no finer occupation for little girls. As she said, "If little girls are playing with horses, they aren't playing with little boys!" I found this hilarious! So, I raced over and got Aria and introduced her to Phoebe and Phantom. Doc, Reo and Rianna soon followed. Phoebe let Aria sit on Phantom and you should have seen Aria's grin. She was elated! A family approached us asking if we wanted our picture taken. Their 2 children (8 and 10 years) were wandering around the event playing their violins. They were stunning little kids and the daughter was dying to get in the picture with us. I noticed that Reo and Aria were barefoot. I could only imagine where their shoes were and hoped they were tucked under some seats somewhere!

Soon afterward, the polo match began. The mood was still and a little somber as a lone rider entered the field carrying the American Flag. I didn't know it at the time, but the rider was Suzy's daughter. She walked the length of the field with the flag blowing gently in the breeze. Everyone was standing watching her when over the speakers came the national anthem sung by this extraordinary young girl, whose childhood experience is mirroring that of Aria's. We had front row seats and as we watched and listened I turned to my right and looked at Doc. There he was standing with his hand over his heart, holding Rianna with tears streaming down his face. I watched him for a moment as I too was in tears. He began to sob and looked behind him for the little girl's mother. He reached over and embraced her and told her how proud he was and how inspired he felt. He then turned to Aria and said, "Aria, I love you so much!" It was almost too much. Doc is a very sensitive and private man. He has been rock solid for months and has shed a tear or two but if he's had any real emotion, which I'm sure he has, it has been out of my sight. I was completely moved to see him so touched and so free to allow his emotions to bubble over for any and all to see. Doc is an exceptional man.

As we collected ourselves a little and as the applause was fading, suddenly Suzy's daughter who was carrying the flag came thundering at a full run down the field right in front of us. It was awesome! She and her horse looked like they were flying and it got the crowd cheering with a roar. This is how the match began.

The announcer was so wonderful to explain the rules of polo and how the game is actually played. I knew nothing about it and was fascinated. It was enormous fun and excitement. During one of the breaks I wandered over to where the polo players were gathering in search for Suzy. I spotted her instantly as my friend said I would and went to introduce myself. She greeted me with an enormous breath-taking smile and immediately asked where we were sitting and said she'd ride over and meet Aria. She was indeed nothing like how I imagined her. She is a petite, gorgeous blonde who is solid muscle. Her arms are as weathered and as powerful as I imagined them to be but she had a confident grace that I didn't see in my mind's eye. I have no idea how old she is and she is definitely the rare kind of person who could be 25 and 65 years old at the same time. She struck me as no-nonsense and I liked her immediately.

We sat and watched polo. We drank wine and wandered around. It was so much fun. There was one point in the game where the entire crowd went out onto the field to stomp the divots of grass back in place. It was here that I took Aria to meet Suzy. She wasn't able to ride over to where we were sitting, so I decided to find her instead. She was absolutely thrilled to meet Aria and before I could blink, she was on top of a horse reaching for Aria to go for a ride. In another blink they were off with me chasing behind trying to ready my camera! They walked out onto the field in the middle of crowd and you should have seen the look on Aria's face. It was bliss. She was in heaven. It was magical.

They attracted quite a crowd. People wanted to pet the horse and at the same time were very curious about the little girl riding with Miss Suzy, who is a sort of celebrity in this crowd. Aria was having the time of her life! Shortly after this, all of the kids were lined up on the field holding their signs indicating the cost of housing for families at the Ronald McDonald House. People could donate a week's stay for a family or a month or whatever they wanted to do. The point was to highlight the expense. Both Reo and Aria were introduced to the crowd. I stood with them because Aria didn't want to be out there by herself. The announcer mentioned that Aria has leukemia and you could hear the gasps in the crowd and she received a good bit of applause when she held up her sign. It was really something else. At the end, Reo raced back to where Doc and Rianna were sitting while I was chatting with a young couple, who approached us. The man wanted to take our picture while his wife couldn't stop staring at Aria and wanted to know all about her. She wanted to hold Aria and have her picture taken with her. I have no idea why and I've been wondering about it since. They were from Venezuela, which made me wonder about them even more. We were sitting on the ground and Aria wasn't interested in being held by a stranger and I didn't push it but instead sat very closely next to this woman. Aria then decided it would be ok and she climbed onto her lap. This woman gave her a big hug and kiss and looked at me with an expression that was sympathetic and something else. I don't know what it was about her. Something.

We had been at this party for over 3 hours! It was such a blast for us! I was floating. We left the party shortly after and both Reo and Aria exclaimed, "That was so much FUN!" I wore my dress and head piece the entire day and was tempted to wear them to bed! I didn't want the energy of this day to end and as it turns out it hasn't. I'm still carrying it with me as I sit here and write. I look back on this day and the memories made and feel so, so, so,.....heavens, I don't even know what the word is. It is more than joy. It is more than gratitude. It is more than relief. As I look at this picture of Aria and the clouds floating above her head, and her brilliant flush cheeks and rosebud lips, I have this tremendous sense of light. The light that was but a pinprick in my gaze only a few months ago is almost blinding when I see it so radiant in Aria now. The light, the promise, the hope, the strength, the perseverance, the trust, the Life, the mystery, the beauty, the wonder and the magic of this journey have come together in a single sublime Spirit. Aria.
~j

September and Aria

This is an all time FAVORITE photograph of Aria!







September 9, 2008
Subject: September and Aria

I thought you might enjoy some recent pictures and an update!
It is Sunday September 7, 2008. I'm sitting in our library and the window to my left just slightly behind me is open a bit. I can hear the leaves blowing in a gentle breeze as well as one of the many wind-chimes hanging from a nearby branch. The atmosphere on the farm today is tranquil as autumn begins to peek in subtle little ways. We've been harvesting honey plums, basically eating them by the dozen right off the tree. The skin of these apricot size gems is a custardy-yellow when ripe and when bitten into gives a marvelous sensation of puncturing something taut only to be rewarded by a burst of sweet juicy plum nectar. The fruit itself is a golden honey color. I prize these plums above all other fruit in our orchard and this year we were rewarded with a kingly sum of them. We have two peach trees that are both, unfortunately stressed. One gave us our highest yield of the sweetest peaches you've ever tasted but I'm afraid this bounty was the tree's final gift. We'll have to cut it down later this season. The poor thing is shedding its bark and losing limbs right and left. Still, we picked a large basket of peaches warm and ripe. Rianna and I ate several on the way into the house from the garden the other day. The other peach tree is weighted down by another nice yield that is about a week or 2 behind and so we'll be harvesting that tree soon. It looks a bit sad, if trees can have such emotion and I do believe they can. We'll have to plant a few friends for it to help boost the morale in Namaah's garden, which has been horribly neglected and is now shockingly overgrown. One of our apples trees has shed most of its apples, which are now lying at its base. The yellowjackets love them and I love that I have easy squashing access as they linger in their greed for more and more apple treat. Yellowjackets, this time of year, are just plain predatory, stinging unprovoked and with a sneaky silence that I abhor. I smash them, step on them, squash them and pulverize them with sickening pleasure, I'm afraid. So, I'm not too dismayed that this one tree has sacrificed its fruit in this regard. I'm quite grateful in fact. I found an apple on the ground that had recently dropped and ate it with pride as I snatched it from some yellowjackets, who I'm certain were thinking it was another tasty morsel for their beastliness. Our other apples trees are doing quite well and we should have a nice showing of fruit in another few weeks. In terms of harvest, that is all I have for this year and I don't have any regrets about it. There is some sadness to be sure, but I simply could not manage our gardens this year and that is sometimes the way of Life.

Aria had a full follow-up appointment on Friday, August 29, 2008, which seems like a long, long time ago. This appointment celebrated her first month of maintenance treatment and I must say she is doing exceedingly well. Aria's blood work for that day showed that her ANC dropped significantly to 1600 (2 weeks prior it was 5700), which is near the maintenance target of 500 - 1500. Dr. Trobaugh was very pleased but slightly cautious because Aria's body has not yet fully maximized the medication on board. When we go to clinic this coming Friday September 8, 2008, which is the 6 week mark of maintenance, we ought to have a better idea of how well her body is metabolizing her current chemo regimen. It is possible that her numbers could tank making her more susceptible to infection, which means that we trim a dose to see if her numbers come into target. It is also possible that her ANC will stabilize within that range and we'll be good to go. We just don't know, which is why close 2 week monitoring is so essential for these first few months.

Overall, however, Dr. Trobaugh couldn't be more pleased. Aria's range of motion in her ankles and legs is much improved and the exercises we are doing at home have helped considerably. It appears that leg braces are probably not going to be in our future any time soon and I am so very relieved about it. It is worth saying that I am open to pursuing them if I absolutely had to, but what a blow to the sense of healing that would be and I'm grateful that we don't have to pursue it with any urgency. I was able to tell Aria's physical therapist that I did not take her recommendation and run with it. I felt it was important to be perfectly honest with her and let her know that despite my understanding of what she was telling us and recommending a month ago, it was simply too much for my mind to deal with in that moment. She was so gracious to admit that it never entered her mind how news of leg braces, even used temporarily, might affect me. She stood before telling me that she felt bad that she never considered my perspective in hearing this new. 'How it must feel like yet another huge hurdle to deal with on top of everything else we deal with', she was saying. She told me that she was so focused on fixing the problem that she didn't fully consider the emotional ramifications of her recommendations. I don't blame her in the least for my feelings nor do I hold her responsible for them in any way. She is a wonderful professional doing her job, making appropriate recommendations. There is absolutely nothing wrong with that. What I needed to do in terms of letting her know how I felt was simply putting to ease my conscience knowing that I had deliberately disregarded her suggestions. I felt it was important to explain that it wasn't just a matter of noncompliance. I thoroughly believe that she was grateful for my honesty and I know I feel better having told her.

Our meeting with Dr. Trobaugh was by far the most social of any meetings we've had to date. I had 2 items on my agenda for discussion both of them involving the dental appointment we recently had. I shared with Dr. Trobaugh that on a very personal level I was emotionally caught off guard at having to complete a medical history form in addition to hearing the news that chemo has some negative effects on teeth. These things, as you know, were very hard in that moment and I was unprepared. Again, it is a situation where I don't blame anyone for not giving me a heads up. In fact, Doc reminded me that when we were in the hospital in January Aria was evaluated by at dentist. For all I know, he told me specifically that chemo would cause discoloration and increased decay but I have absolutely no recollection of it. Dr. Trobaugh listened with her serene presence and thanked me for reminding her that these are the kinds of things that parents need to hear as they approach this phase of treatment. In the back of my mind I was thinking, "You are such a total Goddess! As if you don't have enough to think about. You now have to prepare parents for the emotional rollercoaster that appears out of nowhere when attempting to do something normal." I told her that I wasn't sure how parents can be prepared for such things. On the one hand it would be good to know, but on another it is facing yet another 'thing.' Certainly this kind of information would be better to process approaching this phase of treatment versus any of the others.

Personally, this phase is a place where I can rest in my confidence in the entire process. For instance, the medications are no longer new and intimidating. Cleaning and boiling syringes is now common place. Checking the calendar for appointments and follow-up visits is second nature. Navigating the clinic itself and all the people who work there is like visiting a familiar comfortable place filled with friends. This is all coupled with the fact that Aria is doing well. She is virtually completely back to herself. These are incredible changes that have taken 8 months to achieve and it is only now that I'm ready to process new information and do things that are normal and regular. Dr. Trobaugh very humbly took my experience as a reminder that other parents might appreciate the heads up on these weird little unexpected experiences when they approach phases in treatment that allow them more room for normal activities.

We discussed the two issue on my agenda; the overall health of Aria's teeth and the risk for damage to her permanent teeth. I was so relieved to hear that Dr. Trobaugh does not believe Aria's teeth are at any greater risk but reinforced that the recommendation that we have her evaluated often with increased dental cleanings.

Aria was checked out head to toe. Dr. Trobaugh was beaming. Her head was nodding yes constantly, just pleased as punch with the progression of her treatment and healing. We spent a good deal of time reviewing her medication and dosing and she reminded us of the importance of close monitoring these next few months. After some wonderful exchanges about family and fun we were on our way.

Before you get any ideas that this rather fun meeting was an "in & out" kind of deal, let me say that we were in clinic for over 3 hours. Our meeting with Dr. Trobaugh came at the very end just before Aria received her vincristine via her port. In the interim, we were in the playroom playing with toys. Aria roped a volunteer into playing a horsey game with her that she refuses to let me play. "No mom! You don't know how to do this!" I didn't realize this about myself, but apparently I'm a complete moron when it comes to playing with PlaySkool farm animals. Reo contented himself with the stacking blocks tumbling all over the place. Rianna was very busy in the kitchen making all kinds of plastic gourmet delicacies. Doc was able to do a little reading and I was in an exceptionally chatty mood.

I have to say that I had two of the most genuine conversations with two mothers in very different phases of treatment. I saw the family from Montana and they've been living at the Ronald McDonald house for the last 6 weeks unable to go home because their daughter was just finishing her delayed intensification phase of treatment. They were now waiting for her counts to increase so they could go home, rest for a few days and then return to begin maintenance. I can't imagine how exhausting, emotionally and physically, their journey has been. The mom and I really connected for the first time and she wanted to know what maintenance was like. For the sake of clarity, our conversations have always been sincere and the genuineness that's been missing in some sense has everything to do being guarded. I'm fully aware that many, many times I have presented to the world a guarded face, a guarded heart and a guarded spirit, which doesn't always lend itself to being fully present and truly genuine. Sometimes it is just easier to say, "We're doing ok" than it is to open up completely and say what it's really like. Not only that, but often I've encountered people so uncomfortable with my emotion and my honesty, that their responses, although always well intended, land like a load of bricks on my already fragile being. Sometimes it's just safer to be minimal and guarded.

For some reason this mom was unguarded and wide open to having a discussion of our journeys. I was elated. She, like me, was wondering, "So, what's so great about maintenance?" She also let me know that her daughter had the roughest go in the interim maintenance phase, just like Aria. She was terrified that maintenance would be a repeat of that time. Oh, did I know her anxiety well! We breathed together and smiled with rolling eyes acknowledging that we are warrior mamas ready to do battle but hoping beyond hoping that we don't have to. Her daughter's delayed intensification treatment went very much like Aria's. She had a few blips along the way but nothing too difficult to handle. They were tired and ready to move on. I understood that too. I told her with tears in my eyes that maintenance was still 5 medications a day on a good day and that every time Aria says that her tummy feels yucky my heart races and my stomach flips automatically. I wonder if this response will ever go away. I also tell her with tears in my eyes that Aria hasn't felt this well since before she was diagnosed. She plays like she used to. She laughs. She sings. She dances and twirls. She is enjoying life to the fullest again and so am I. Maintenance feels like a welcomed bit of normal to our "new normal". I reassured her as I best I could that for us it has been a dramatic improvement in terms of quality of life. I told her that the most telling thing about this phase is that I have had for the first time space to think about things other than cancer and death and sorrow and fear. She looked at me with tired eyes and smiled. "Oh," she began, "I can't wait for that. All I've thought about for the last 7 months is what are we gonna have to deal with next?" We laughed together and our laughter blended in a knowing sense of relief and understanding after having journeyed similar tumultuous, unpredictable, and frightening landscapes. We ended our conversation with acknowledging the end of crisis and the beginning of an entirely new chapter. With that, they were off and as I watched them leave I sent up a thought that they would soon be able to go home. ( I found out later that it would be another 10 days before they could finally do just that.)

The other mother I spoke to was someone I had seen maybe once or twice and her son looked vaguely familiar too. Come to find out, they are fast approaching the end of his treatment after 3 1/2 years. He, too, was diagnosed with ALL when he was 18 months old. After a few months of trying to treat chronic ear infections, he just seemed to be 'getting worse.' The final straw for them was an obvious lethargy and fever. Blood was drawn and after holding him down to allow the blood draw, she noticed bruising all over his arms. She was absolutely terrified. A few hours later, she told me, their doctor was standing in their driveway with the news. She said that within an hour they were packed up and heading to Spokane. I can't remember now where they were living but I do recall that they have since moved to the Spokane area. I was trying to digest the idea that in a moment life as you know it can become something completely different. It is a profound thought and something that haunts me still.

She and I had the most amazing conversation. Here was a woman on at the end of treatment candidly telling me her story. I was captivated. What I appreciated so much about her was her 'realness.' She was teary at times revisiting those scary moments. She also admitted that she's just 'completely done' with having to come to clinic. She began with something like, "I know this sound so horrible, but I'm just so sick of coming here. I know it's only once a month for a few hours but, man, I'm tired of it. I know it is saving his life and what could be more important than that, but.." She was teary and I interjected with something like, "I don't blame you for being burned out. 3 1/2 years is a long, long time. You're at the end of this part of the journey and yet you have to come here and meet people, like me, who are just beginning or you encounter people who have to repeat the process, which only serves as a reminder that there are still no guarantees even after treatment. You have to interact with people you've know all this time and their kids aren't getting better or it's taking even longer for them to get better. The emotion in this place is like nothing else." She nodded and said, "yeah, it's like I'm so happy we're so close to being done even though we aren't really done. After he stops his chemo, then his body is left to its own devices and then what? We come back here every month for check-ups. I'm happy about his prognosis and that he's done so well but I'm scared too. I'm happy that we're at the end of his treatment but I feel guilty when I see other people still dealing with it." We were silent watching our kids play sitting with those thoughts for a moment. I was amazed that she was so reserved knowing the end of treatment was only 2 weeks away. 2 weeks! What that must feel like?!

I found everything about her incredibly refreshing. I can imagine people reaching the end of treatment and being jubilant almost over-the-top joyful tempted to hide or mask the anxiety and fear that still exists. I can imagine those in her circle of friends rejoicing at being done with treatment without really understanding her reluctance to join them in celebration. I made a comment to that effect and she nodded in agreement and said something like, "How do I even begin to explain to people who haven’t dealt with this what it feels like?" I was quiet and said, "You just tell them the truth."

I don't know what it was about her that captured me so completely. I was overwhelmed with happiness for them. The nearing milestone of completing chemotherapy after 3 1/2 years is monumental! I was overjoyed for them and could hardly contain myself. I also mentioned to her how promising it was for me to see her son approaching the end. There is an end to this treatment and even though it is 19 months away for us, give or take, there is an end. The chapter called chemotherapy will end and a new one will begin. As scary as that is sometimes, there is a real promise there and it becomes more tangible every single day. For her that new chapter will include all the side effects of chemo and for her son part of that includes damage to his kidney and God only know what else. We laughed together at the idea that it is the end and the beginning at the same time.

Her genuineness, her fatigue, her burnout, her realism, her playfulness, her optimism, her worries and fears resonated deeply with me. I was incredibly grateful for every single moment I spent with her. Here she was, this beautiful young stay-at-home mom with 2 older children at school and her 4 year old son playing with my kids. The similarities we shared were fabulous. She owns a little acreage and loves to garden. She has hens and adores her farm fresh eggs. But what I most appreciated was her willingness to say that despite the fact that her son is doing well and that the end of treatment is near, there are unknowns to be faced. This process isn't over despite her desperate desire for it to be. Even though things are well, there are plenty of 'buts' in her view. There was nothing about her manner to suggest that she wore the mask of, "No, no, no, everything is just fine!" She was living proof of my mantra to live true and I'm indebted to her.

Just before Aria received her chemo she came up to me and told me that they'd been hanging out in clinic for almost 2 hours for no reason. She thought they were waiting for test results and began to wonder, "Man, this is taking a really long time!" She finally asked someone and realized her mistake. Sitting in the clinic for any amount of time let alone unnecessary time is a drag. I thanked her profusely for spending so much time with me and her comment was, "Yeah, that was the reason I messed up on the time here. I was supposed to sit and talk with you!" We thanked each other and as she was leaving I marveled at her gift to me. The gift of her time and her genuine self is a prize I will cherish. As she was heading out the door she turned to say good-bye and I said, " I hope I never see you again!" She stopped and burst out laughing, "Yeah, me too. Hope I never see you again...unless we meet up at some cool farm auction or something!" We laughed and laughed. Oh, what a gift it is to laugh and to connect with another person in this way. In truth, I do hope I see her again someday.

In case you forgot, Aria was back on her steroids for 5 days. Doc and I were amazed at how well she did. It is either that or we are doing a better job riding her emotional ups and downs! She didn't seem as emotional this time in terms of her sensitivity, but her patience was next to nil. She also craved noodles and bread again. I was amazed at what she was able to pack away. I hadn't seen anything close to it in a long time. She ate several pieces of bread and then wanted yogurt and then noodles and THEN pizza! Amazing. She's started to really enjoy steak so we indulge that healthier choice a few times a week too and she can put away a hearty plateful.

School started on September 2. Reo is in the first grade. He is away from home for the first time all day long. I was completely stressed out about it and I missed him terribly. I'm feeling much better now and I adore his teacher. He was ready to go 30 minutes early on the second day of school and his enthusiasm has remained high since. He loves it! Aria is back in preschool 3 days a week and seems to be enjoying it. I wouldn't say she loves it. It is a complete departure from her normal lounge around routine. I think she is enjoying seeing her teachers and some of her friends. Once we have a routine down, I think she'll enjoy it a whole lot more. 3 days is really all she can tolerate at this point. Thursday, last week, one of the teachers told me that she was wiped out and just wanted to be held for the last 30 minutes of class. Mind you, her class is only 2 1/2 hours! She's still building her stamina and endurance for such things but I suspect it won't take much time.

As I'm walking this path of maintenance, I'm on a nice flat stretch with a wide view that is completely lit up. The air is fresh, the wind clears my head of worry and woe and I often skip along with sighs of contentment and a few giggles thrown in here and there. Although I'm cautious and I think realistic, I'm also feeling truly hopeful and positive about what's to come. I recognize that this is fully reinforced by the fact that Aria is so well and I dare say that I doubt I'd be feeling as optimistic if her treatment was working less well. It makes perfect sense to have wavering confidence when the process is murky and uncertain yielding less than positive results. I'm thankful that that isn't what we are contending with now.

Step by step. Here I go. I walk closer to mystery embracing with greater actuality this hopeful promise. It is here I pause. It is here I am. ~j

August General Update

August 26, 2008
Subject: General Updates
August 26, 2008

I think it is important for me to once again say, "No news is good news!" I'm beginning to have a better sense of this "maintenance" phase and why people have alluded to its ease and gentle direction toward normalcy. We are fast approaching our first month in maintenance and the relief of Aria's well-being is extraordinary. Her tolerance of the medication/chemo has exceeded my expectations in every respect. We have not yet reached a point in time to know what the long-term tolerance is going to be like, but if the past 4 weeks are any indication, we are anticipating a relatively merciful journey. Aria remains at greater risk for infections, which will have an immediate effect on her counts. Hospitalizations are not unheard of, although less common during this phase. Her medication will be adjusted accordingly throughout her treatment, so really it is a matter of 'maintaining' a level of vigilance and awareness that keeps her as steady as possible.

I write to inform you that I anticipate fewer emails over the course of time. However, I will always write an update whenever Aria is in clinic. Part of my reasoning is to simply have documentation of not only how often we've had to visit clinic but to describe in some detail its purpose. In terms of what happens in between those times, I can already anticipate that I'll be less inclined to write about our daily lives, which really have become rather ordinary, much to my delight. It has occurred to me very recently that my mind has been less occupied with thoughts of cancer and what it means to be a care-taker and how it effects my spirit and my psyche. I'm no longer completely and utterly consumed by these thoughts and I'm rejoicing.

I now have room in my mind for other things. I've been thinking about my creative side and I've begun to express that once again in my sewing studio. I actually have space in my thoughts for seams, button holes and zippers. I look out to my pasture and I see my kitchen garden with a large pumpkin patch and sunflower forest waiting to bring its magic to my gaze next season. I look to my gardens around the farmhouse and although they are in need of serious attention, they are welcoming and inviting. What was so overwhelming, new, daunting and frightening several months ago no longer applies to today nor to our future or so it seems to me now.

I realize fully that I wouldn't have believed anyone if they would have told me a few months ago that I would be feeling this way now. Somewhere in the recesses of my mind, I would acknowledge the sentiment trying to maintain a sense of openness but my heart would be doubtful. 'One can not know what they don't yet know' is a rather moronic thought but this is what rings in my head presently. I embrace completely that I have the perspective I do today because of what I've experienced these past few months. I find it extremely important to say because it is so tempting to advise others from this place of experience in offering well-intentioned reassurance. I remember like it was yesterday the woman who came into our hospital room the morning we were being discharged after an 8 day stay. She was 10 months into the journey so her recollection of her first week was not at all her place of trying to promote that things would be better. She was well on her way into maintenance so for her to relate to me in my state of grief, fear, sudden loss, and sorrow was probably the farthest thing from her mind. She wanted only to tell me that everything was going to improve and I certainly don't blame her for her motivation. However, there was nothing in my immediate experience to allow for the same assurances. As much as I appreciated her visit and her words and experience, I knew that this was something I'd have to experience on my own. I say this because I suspect I will one day find myself in her position and I think it is important for me to consider what I would want to say. I can now reflect and consider those things that might have been helpful and perhaps share that view. Ironically, nothing comes to mind! I can't think of single thing that anyone could have said to me that would have alleviated my anguish. Rather, it is the presence of a listening ear, a compassionate heart and the confidence to sit comfortably with my emotions that seems to me to have been most helpful. I've been blessed to have an abundance of such things and this has contributed most effectively to the confidence I have now to continue on with a much lighter step.

As well as things are, not a day goes by that I don't have some kind of reminder to contend with. I sometimes feel like I'm an untied balloon that is almost nearly full most of the day but something happens throughout its course that allows for just a little air to sneak out. I find myself lighter, floating upward, nearly ready to let go but a reminder enters my consciousness and I sink ever so slightly. I must, with some effort, replace that loss so I can be uplifted once again. Day after day I participate in this ritual of sorts and so it continues......

Allow me to illustrate it for you with a story. Last week, Monday, I took the kids to the dentist for their 6 month check-up and cleaning. It never once occurred to me that Aria's leukemia would feel like a slap in this environment. I knew that I would tell her story and I would receive wide eyed stares and wonderment but I never made a connection that her cancer and its treatment would have any negative consequence on the development and care of her teeth.

I'll tell you that we have a wonderful dentist and her entire staff is remarkable. They are warm and gentle in every possible manner, so going to visit them is rather a nice treat. Imagine how stunned I was to receive my first slap when I was asked to update the kids' records and complete their medical histories. Until this time, Aria's medical history in any documented form has been exclusively reserved for only the oncology clinic. There before me was a familiar medical history form listing all kinds of medical conditions that may or may not be applicable. We've all seen them countless times and this was the first time I'd ever experienced filling one out where I found myself making check marks over and over and over again. It was all I could do not to crumble in tears when I reached the end of the form. It was such a stark reminder of loss. Before the process of her diagnosis in late December 2007 and January 2008, Aria had never once been to the doctor with the exception of well-baby checks. She had never had an antibiotic and I could count on one hand the number of times she needed over-the-counter type medication. Life for her has undeniably changed and separates her completely from the experiences of most 4 year old children. This paper, staring me in the face, was proof of it. Once again, I could feel my heart shatter into a million pieces and the sorrow of what she's lost and had to endure came flooding over my senses.

A peculiar dialogue began between my heart and my mind as it so often does. What I found so stunning was how angry both were;
My mind began with something like, "Julia! For God's sake, stop being so damn melo-dramatic! She's doing so well and this is just now a part of it! Get used to it!"
My heart was taken back by my mind's lack of feeling and it was seething in its defense. "Melo-dramatic? Are you kidding me? Did you not see how many check marks you had to make? What the fuck is your problem?"
Mind quickly snapped, "My problem? What the hell is wrong with you? Why must you insist on staying in your dark little dwelling? Can't you see the light? Can't you recognize the promise? Why must you look back? We are going forward whether you like it or not!"
I'm taking deep, deep breaths. I'm trying to slow my heart rate. I'm trying to calm my mind. Both are racing when a third party shows up unexpectedly. It is my Spirit who says, "What marvelous voices you are. How you compliment one another so well. I sincerely doubt I would be as effective without you so clearly making yourselves known."
My mind and heart are enthralled by my Spirit, who seldom makes such an appearance.
My Spirit continues, "My friends, you needn't be settled in one place or another for you both serve an equal purpose and perspective. Don't you yet realize that you cannot appreciate the light if you don't first appreciate the dark. You cannot understand the catharsis of moving forward if you never glance behind you once in while. In every moment of life you are who you are because of who you were."

I begin to smile. My heart is calm but my mind is rather rigid and a little put out. My Spirit continues soothingly, "So often what you read and so often what you hear about strength and courage and being positive is like a wooly cloak that is rugged and tough but lacks the lining of sincerity that makes it comfortable to wear. You, my friends, are simply creating that lining and you have an opportunity to weave something that is unique and true."
My mind begins to ask a question, "But...."
My Spirit is silent once again.
I'm blinking back tears and I hand over Aria's medical history form to the receptionist. I feel sad but content at the same time. I have a sense of acceptance that is tangible and empowering. I'm well and know I will remain so.

I was later brought back to the area where Aria was having her teeth cleaned. I was told that she was beginning to get upset. I entered the space where she was and saw her on her back stiff as a board. She was nervous and uncomfortable lying ever so slightly tilted backward. I imagined that this position was enough to make her feel like she was going to fall upside down. Her hands were gripping the chair's arms. She was wearing large plastic sunglasses with yellow rims that gave her an exaggerated buggy-eyed fly-like appearance. She took one look at me and burst into tears, "I wanna GO Ho-ho-hoME!" I tried to console her sitting with her on the chair and asked the hygienist if perhaps Aria could sit more upright. She was so accommodating and understanding, encouraging Aria that we were almost finished. She told me that Aria's teeth had been discolored because of the chemotherapy and I swear to you, it wasn't until I was under the lights in that room and hearing her words that I noticed Aria's teeth were dull and yellowed and seeming to become more-so with every passing moment. I had to repeatedly blink my eyes to get the image of her teeth going from a yellowish tinge to a brown rotting mess out of my head. I can laugh about it now but in the moment, I was distressed! She then told me that Aria had a lot of plaque build-up, which is common with chemotherapy. As she was telling me this news, she was continuing to scrape plaque from Aria's teeth. She told me that people with cancer, generally have a great risk of tooth decay so we are going to have to be more aggressive with her cleanings and fluouride treatments. I asked her if she thought Aria's permanent teeth were equally affected and at risk. I was told that she just didn't know but it would be something they would watch very closely. Aria is now going to receive cleanings every 3 months and will be under the watchful eye of her wonderful dentist.

As I said earlier, it never occurred to me to even imagine that Aria's chemotherapy would have anything to do with her teeth. At the same time, who would have thought that one of her medications would make her want to walk on her tippy-toes so much so that she may need leg braces. I'm now wondering about the long-term effects on her eyes and ears, balance and so forth. It is all encompassing.

What I have written here is what it feels like to have a little bit of that air released from the balloon of my spirit. Yet, in the process of this writing, from the corner of my eye I could see Aria walking toward me. I am sitting in our library, which is on the first floor of the house on the west side. There are 2 doors in the library; one that leads to the living room, which is a hub of activity and another door that leads to our mud room where the dogs (all 5) reside. To my left and just behind me is a window that gives me a wonderful view of one of our two crabapple trees. It acts as anchor to one side of a white mesh hammock that is a favorite resting place. It also houses our 3 kitties, who are chased up there on a regular basis by one of our psycho-cat-killing dogs. A variety of birds twitter and play among its branches filling my ears with their chats. I can hear the leaves blowing in the wind and when the kids are outside in the playground, I can hear them in the mix. It is a wonderful and serene place to sit and to write. Just moments ago, Aria was walking through the living toward me. She was wearing her beloved ballerina costume carrying a small bundle with great tenderness. She was tip-toeing not wanting to make a sound. As she approached, I could see that she was carrying one of her baby dolls meticulously swaddled in a hand-made doll's quilt that my mother-in-law made for her. She was nuzzling her baby, stroking the top of her head with her cheek. I whispered, "Is she sleeping?" Aria nodded that she was. I added in another whisper, "My, what a good Mama you are." Aria looked at me flashing a brilliant grin as she was gently rubbing her baby's back and said, "I know. I am a good Mama!" Then without any warning at all, she tore off the baby blanket and threw her dolly in the air tumbling in all directions and squealed, "Wheeeeeeeeeeee!" The baby doll landed with a small thud and Aria raced away to play with Reo. "Come on Reo, let's play swords!" I heard her say. This moment with her, which was no more than a minute or two has filled me to overflowing.

As I end this note, the balloon that is my Spirit is full and beginning to float even though it hesitates. I am lighter despite the weight that we face every day. I suppose in some ways I am learning to truly celebrate the place of balance. The place that is neither light nor dark but the one that meets in the middle. It is neither good nor bad but somewhere in between. It may seem like an obvious place, one where most people reside, but for me, I am in a place in life where this is for the first time truly, sincerely tangible. Funny, but I'm sitting here thinking, with my fingers to my lips trying to find words to express how it is that I feel completely open to "come what may" and at the same time I am full with what has already been. It is a place of pause, I suppose. I'm taking stock and I must tell you that I have a tremendous sense of abundance that is both sustaining and enduring. Tell me, could anyone ask for anything more? ~j

1st Maintenance Friday Clinic

August 19, 2008
Subject: 1st maintenance Friday clinic

It is Saturday morning August 16, 2008. Yesterday we went to clinic so that Aria could have her finger poked, vitals taken and so forth. She has put on a little weight, which is good and has grown in height a little too. I can't remember the exact numbers now. Suffice it to say, that she is growing in the right direction. Her finger poke went without incident and we were able to follow-up with Dr. Trobaugh's nurse, Mary, about how Aria has been doing. We are so pleased with her tolerance of the medication so far. She experienced a bit of nausea only one time following her procedure 2 weeks ago and has had nothing since. It is such a huge relief. Aria seems like her old self in almost every way and I can't tell you how marvelous that feels to me. For the first time since January, I feel like the ground beneath my feet is firm and I feel like I am firm as well. It is exhilarating.

We stayed at the clinic for only a short time. I have to say, the environment felt very festive and fun. Aria did not want to leave before she had an opportunity to play with her beloved Krista. They have a game that they play and Aria pouted when she learned that we were ready to go. She actually more than pouted; tears welled, her shoulders sank and she stomped her feet. Reo chimed in, too, with a hearty, "I don't want to go yet either MOM!" I was over-ruled in the matter so we stayed for a while and played. How's that for a transition? Aria and Krista played. Rianna romped here and there while Reo played on foam blocks he loves to pile and then knock down with a mighty, "T-I-M-B-E-R!!!!" Good wholesome fun was had by all.

You know what? Clinic remains a twisted perspective of fun. There's this desire to think, "See? We're having fun. See? No one here is horribly ill. See? All is well....right? It is ok....right?" I know darn well that it isn't and I know that this fun is a mask, a thin veneer hiding what lies just beneath the surface. I find this a struggle most of the time. It is what I know and understand as an adult, parent and mother all the while I am surrounded by the blissful innocence of children. I'd love to be able to forget and dive deep into the play and amusement of these kids but I can't. I don't think anyone expects this of me and I certainly don't want to pretend to be having fun when I'm not or to 'put on that brave face' when it may very well compromise my sincerity. I just can't be fake. I must live true. At the same time, I'm learning to abandon myself a little and ride the whims of these kids. I'm learning to allow myself to release my practical side somewhat and be guided by them. I found myself having fun almost despite myself and this was a wonderful thing!

I was sitting down watching the kids play and interacting when I struck up a conversation with a mother sitting next to me. She and her son were new to me so I decided to introduce myself. I felt lighthearted and social. The atmosphere was truly celebratory. I mentioned that I hadn't seen her around before, although she looked very comfortable like she knew this place well. She told me that this was the second go-round for her son who is, I'm guessing, 10 years old. Last summer he was diagnosed with an aggressive lymphoma and received a bone marrow transplant. He had been doing very well until this past summer when he was diagnosed with a secondary cancer; leukemia. He is currently in remission after receiving extensive chemotherapy already and will probably have another bone marrow transplant in the Fall. Secondary cancers as a result of treatment are common I've learned and leukemia is very common. This is a horribly bitter pill. This woman was matter of fact in her telling of her story, all the while I was speechless. I found my eyes searching hers wondering, "How do you do it? How do you have the courage to face this all over again?" I was silently listening and internally screaming. It was the strangest sensation that I've had countless times now. One would think I would grow accustomed to it or at least come to expect it, but I don't. I still sometimes feel suspended in reality as if I'm a complete stranger to the people and the environment I've come to know so well. She shrugged her shoulders in a resigned, "What are ya gonna do?" sort of way. I ached for her and I breathed deeply for myself. It was yet again a glaring reminder that part of my coping is not allowing my guard down too far. Maybe this is all illusion but for now my mind and my heart agree that I can superficially embrace that things are well but at the same time I have to brace myself for the possibility that anything can happen.

As I write this it seems almost obvious and I can hear the nagging little voices in my head saying things like, "Of course Julia! Of course you can't fully dwell in the place that everything is fine. You still have a long way to go and when you reach the end there are a host of unknowns yet to be met. You know as well as anybody that there are no guarantees."
My heart retorts, "Yes, dear mind, I know this but what I wouldn't do to feel differently. What I wouldn't do for the bliss of knowing all was well with my children. What I wouldn't do to simply toy with worries that live only in my imagination as opposed to having to actually face them every single day mixed among a million moments that are brilliantly wonderful. What I wouldn't do to be able to separate myself from the people I encounter in the clinic every 2 weeks. What I wouldn't do to be able to feel like I did before Aria got sick. What I wouldn't do to be able to fully accept my life as it is."
My mind listens deeply and gently hugs my heart and says, "You know, to hold your yesterdays in your pocket only serves to inhibit your being present to face your life as it is."
My heart is quiet. My mind and my heart are together in a tender embrace and when I look up I realize that I'm sitting quietly with my head bowed. I'm smiling.

It is now Tuesday August 19, 2008. It is the fault of my Goddesses, Jeannie and Ellie, who came to visit this weekend and brought me joy, laughter, good conversation, distraction and sisterhood, that I am so delinquent in getting this update out to you. They are food for my soul and it was wonderful having them with me. We rejoiced often at how well Aria is. How well she looks. How much energy she has and how joyful she is. I found myself spending a lot of time in those observations and it was powerfully healing. It is a humbling experience to be with people who have seen Aria during very low times and now see her so much improved. In fact, if it wasn't for that fact that her hair is only just beginning to come back, I sincerely doubt anyone would know she was still fighting a life threatening illness. It is humbling because as her mother I can't help but think that it would be much easier and emotionally safer for me to stay in a place that was 'on alert' most of the time ignoring the fact that life for us is very different than what it was 7 months ago. It is very different than what it was even a month ago. This change has been nothing but positive but I tell you, it is so tempting to remain in thoughts that end with "but.....". Aria is doing great, but.....Aria will be able to go back to school, but......Aria's energy is back to normal, but..... I can't help but wonder if this "but...." is another way to safeguard me from being turned completely upside down and stunned at what Life can hurl. My Goddesses helped me see and feel and sense that to rejoice in the moment that is quickly followed by a "but....." is futile and stagnating. It's like pedaling forward and then backward. Forward and back. Forward and back and after a while facing the inevitable question, "Why aren't I getting anywhere?" It's like trying to light a match in the wind knowing full well that it is an act of absurd desperation. Still, I swear to you, it is so tempting because it is safe. I light the match in the wind because at least I'm doing something. I pedal forward and backward because at least I'm sort of moving. I celebrate her improvement recognizing it for what it is but I protect myself because I'm afraid of what could happen. This experience has shattered my sense of security and in some ways this is not a bad thing.

The problem is that I haven't fully accepted that my sense of security, my ideas of control were nothing more than fabrication. I'm certain that once I do, I'll no longer need to use the word 'but...." I'll be able to look at Aria, marvel at her wellness, relaxing in a moment of thanksgiving. For now, I'm not there yet. I'm still scared to death. My Goddesses, who have not been with Aria every single day, have a broader perspective and were so good to help me look up and away and see how big the picture of Aria's experience has become. I've been so keenly focused, so guarded, so regimented that I haven't made time to look around and really take in the view. My Goddesses are cherished friends who gently lifted my head and took care of things around me so I look deeply. It would be easier to stay in a pattern that is familiar and pointless but it sure wouldn't take me anywhere. I am so thankful for their time with us!

Friday afternoon we got a call from the clinic with Aria's test results. Her ANC skyrocketed to 5700. Her hematocrit was nearly normal at 32 and her platelets were well above 250,000. This was fantastic with the itsy-bisty exception that her ANC is too high. For the phase of maintenance her ANC needs to stay within the range of 500 - 1500. An ANC of 5700 simply means that either her chemo medication has not fully kicked in yet, or that the dosing is too low. We're in a wait and see pattern now for the next several weeks. This is not new information, by the way. I feel like we were well prepared to deal with the fact her meds would more than likely need 'tweaking' on a fairly regular basis for the first few months. We've been doing this for 18 days. We're doing well. Aria goes back to clinic in 2 weeks. At that time, she'll have a full exam with Dr. Trobaugh, lab work will be done and she'll receive her monthly injection of vincristine and she'll take her 5 day course of steroids.

I dread steroid days. I have to admit it. I know the 'noodle' story was hilarious in many respects and I've recently reread it and found myself wanting to laugh and cry. That morning is so vivid in my memory. I'll be sure to document and other doozie stories like that one but suffice it to say that steroid days are mentally exhausting. Aria is on and off, hot and cold, sweet and sour, loving and hateful, gentle and fierce, joyful and sad and so forth at any given moment for several days in a row. I know this. She is transparent most of the time and I am equal to the task but I have to tell you, it sucks the life blood out of me. Steroid days test my patience to the max and I despair when I falter. I pop the wind from my sails when I'm careless in my thoughts and reactions to her. It isn't a matter of the saying, "Well you're just human," nor is it a matter of being 'just of those days." Steroid days are entirely unique and separate from everything else and so when I fall short, I'm frustrated that I didn't meet the challenge well. I'm frustrated that I allowed the opportunity to slip by. I'm irritated that I allowed myself to neglect the moment.

However, in this moment, as I'm writing, I look to these next 19 months or so as opportunities to try again and this blows hope back into my spirit that I will exercise greater compassion. I will be more patient and understanding. I will be more present and hopefully more at peace. Can one be grateful for such an opportunity? I suppose in some ways I am and this is nothing but another perverted perspective I've gained through this experience. I'd do just about anything to not have to experience this with Aria and have these 'opportunities' but that isn't reality so here I am processing and writing to you feeling grateful for even this opportunity. It's so odd. I feel like I'm being lightly blown around on the breath of my own sigh. It is relief I feel and it is also a gearing up sensation. The image that comes to mind is a dandelion seed dancing on airy swells until finally being laid to rest upon the earth somewhere creating a tenacious root that thrusts deeply into the soil. I, too, am floating around having my light moments followed by other moments that are grounding and onerous. This is life for me and I tell you truly, it is still good. ~j

the potty corner

These are some Summer Fun pictures



Aria with a pony henna tatoo I made. She LOVED it!






August 13, 2008
Subject: The potty corner
How wonderful it is to laugh! How fantastic it is to feel whole-hearted delight. In this moment, this is how I am and how we all are.

Just before noon today, the kids and I decided it was time to play in the pool, which a large in-ground "L" shaped pool that is surrounded by a green chain linked fence. Within the grounds of the swimming pool is the original well and pump to the farm, which was established in 1915. The pump was powered by a windmill, whose skeleton like structure still stands erect on top of it. The well itself is covered with a rotted piece of wood, some stones and grass that have found life in between the cracks. One would hardly ever know a deep well is hidden below. Doc has since built a safety fence around it. The windmill no longer functions to pull water from the ground but it remains decorative in its presence and brings me delight as I float in the water and stare at its turning blades against a blue canvas of sky.

The windmill is situated in a grassy corner that for some reason is an inviting place to pee. It isn't remotely private but something about that corner calls the very nature from people. We have christened that place 'the potty corner" and those who find it too much trouble to race to the house and peel away a dripping swimsuit will answer the invitation to the potty corner. Aria heard the call today and the scene that unfolded was dazzling.

We entered the pool and were gathering our equipment for water fun; goggles, buckets, rafts, crocodiles and the like when I noticed Aria quietly and unabashedly tip-toeing to the potty corner. I might add that the 3 kids were naked since everyone knows skinny-dipping is the only way to swim! I was wearing a little 2 piece number and frankly the jury it still out on whether it might have been visually wiser for me to join the children in their birthday suits! Alas, I digress.

So Aria tip-toed to the potty corner naked getting ready to pee. Rianna followed close behind wearing her life jacket with its bottom strap riding the crack of her bum like some silly g-string. She isn't bothered. She's fascinated with Aria and is copying her every move. Aria has her back to me while I'm watching her from the shallow end of the pool. Her stance is wide and she relieves herself. Now this alone would be inconsequential if it wasn't for the delicate little dance she performed at the very end. Aria stood there for a moment, drip, drip and then with her fists in the air, her knees slightly bent, and her butt in the air, she wagged her body like a dog! What was so incredible was that I could have sworn I heard dainty little bells chiming away with every little wag she made. But that's not all folks. Aria proceeded to shake her leg with a fervent wiggle-waggle. It was all I could do to contain myself. Aria turned to me with a puzzled look as if to say, "Mom, what's so funny? I'm just going pee!" Rianna meanwhile, was crouched low practically sitting on the grass trying hard to pee like big sister. I commended her effort with applause and praise. Rianna raced to me with smiles and squeals as Aria was gingerly climbing into the pool. Reo had long been diving in the water searching for rockets and sunken spiderman action figures.

We spent a good while swimming and splashing. The bliss of this time, this innocence and these children create a life force all to its own. It is sustaining to me in ways I could never have imagined. Today, in this moment, I realize the milestone we have achieved and despite the many steps we still have to take I am beholden to the many simple gifts that make up this great Life. ~j