Tuesday, June 30, 2009

Into the Light

March 31, 2008
“Into the Light”
It is March 31, 2008 and I am very, very happy to report that I have risen from the quicksand of sadness and stand now on the edge of that pit with light on my face. The victorious smile I wear, I realize, has little to do with me but everything to do with the many people who came to my aid. I smile to show my gratitude, which is great.
I thought, like Jaguar Paw, I would have to conjure every ounce of strength I possessed to pull myself dramatically out of my sorrow. I was mistaken. I barely had to lift a finger and I’ve learned an incredible lesson as a result. In exposing myself, in opening myself up completely to you, in presenting to you my darkest corners in the most honest and humble way I could, the most extraordinary thing happened. I began to relax. I began to surrender not in a defeatist sort of way but in an “arms wide open, mind wide open, come what may” sort of way. I found help in most surprising of places and in the most surprising ways.

My sister Sue called me that day after she received my email. She wanted to make sure I was ok. Hearing her voice was soothing and brought me back to the innocence and wonder of my own childhood. I sat recollecting my playful world of New England and it was so healing. Sue asked me how I would lift myself up and out and at the time I thought it was ‘I’ that was going to achieve that, so I responded, “By peeling back some layers and simplifying my life even more.” She asked immediately, “How are you going to do that?” “I haven’t the foggiest idea!” I told her as I laughed. Simplify. Oh, it sounds so good and resonates so nicely but how does one actually do it? I’m sure for everyone there are a myriad of ways but this is what I did.

First, I had to accept once again that I’m a first class procrastinator. In this case, I wasn’t neglecting bills, or some report or letter, or the many mundane chores of running a household. Instead, I was procrastinating getting to the bottom of my despair. I knew I needed to get beyond the bottom of it and actually get underneath it in order to begin pushing it up and out of my being. This was going to be messy and I was dreading it. But like most proficient procrastinators I ignored the process long enough until a pinnacle was reached. That pinnacle or place is where one finds oneself unable to escape the obvious by doing other things. There is a force here that cannot be denied that acts like the ultimate motivator. I call it ‘the fuck-it factor’ or more gently put “the F-it factor”. I find myself grumbling as opposed to actually saying, “Oh, fuck-it, I’ll just do it!” It’s like being able to give myself a swift kick in the ass to get me going. It may sound abrasive and it is but it helps. So, I began.

The first layer I peeled away was darkness itself so I could reveal its counterparts, which are light, joy and laughter. I knew I needed these in abundance. The cliché “laughter is the best medicine” gagged me when I thought of it but pissed me off even more to realize its truthfulness. Darn it! I needed to find some humor and I needed to start laughing again. I fired off an email to my friend Dan telling him I needed to hear from him and specifically needed some jokes. He did not fail me and I found myself escaping into laughter. It was indeed very healing and I was ready to accept it. I realized that analyzing the darkness wasn’t what I needed to do. I have my reasons to be sad and I’m certain that I’ll revisit them repeatedly, so staring at them noticing all the detail wasn’t going to assist me in this moment. I needed to engage in things that were in direct opposition to what was making me sad and this was a little challenging because I had become somewhat stuck. Laughter lightened and loosened me up just right.

The next thing I did was read and reread several emails I had received. They were so powerful, full of tenderness and care. People reaching out to me not to lend a hand necessarily but to say very clearly, “I’m here!” It was so helpful and before I knew it, I was lighter and the force pulling me down was lessened.

I began thinking about the word “simplify” and how I could better apply that. I thought about simple food we could eat. I thought about simple maintenance in the house that would keep things tidy and reasonably organized. I thought about simple activities for the kids that would be fun and fill my ears with laughter. I began thinking about all the simple little things that make me truly, sincerely, deeply happy. I realized that one of them is music. I remembered a conversation I had with Goddess Rebekka just a few days before about a movie called Moulin Rouge starring Nicole Kidman and Ewan McGregor. It is a colorful, musical film with vibrant imagery and quirky mixing of famous songs. It is a love story and I remember the first time I saw it a few years ago, I hated it, but was moved to tears by the final love song duet by the lead actors. The second time I saw the film was some time ago and I fell in love with it and am now proud to own it. I hadn’t thought about that film since and our conversation reminded me of that love song, which I suddenly craved to hear. A few days later, I put the kids to bed popped in that movie and forwarded it to that song. I was sobbing as I watched it and at the same time cracking up over how completely absurd that was. I found myself scanning through the movie to play the few love songs that are scattered throughout. I cried a torrent of tears that night and it was such a release. The next day, the music was still in my head and I could hear Ewan McGregor’s voice singing and it was so lovely. Like a completely pathetic person with nothing better to do, I watched those scenes once again and let the tears flow freely. I knew eventually if I watched the scenes enough times and heard the songs repeatedly that the tears would end and they have but not without me practically wearing the DVD down and not without me compulsively having to buy the soundtrack so I could hear the music in my car! Oh, the ridiculous and pathetic things we do to make ourselves feel better! I’m amazed
It is such a simple thing to listen to music and to watch movies and I indulged myself completely in this one movie trying to make sense of why it resonated so deeply with me at this particular time in my life. It may seem silly to describe in detail why a particular song or movie has such a grip, but I think the power lies in their ability to remove us from our current circumstance and place us where we might have a different, if not better, view of it. I was in a place in my mind that was dark, anxious and oh so sad. Hearing the crooning gentle voice of Ewan McGregor brought me to a lulled state that gave me some peace and gentility. I can’t help but wonder if chance ever afforded itself for me to meet this person, if he wouldn’t up-chuck his Scottish ‘stovies’ to hear me say that his singing was a lul-la-bye putting to rest in me a tumultuous emotional storm. But that’s exactly what he did and the lyrics he sang began to resonate louder and clearer. If you’ll indulge me a moment:

“Come What May”
written by David Baerwald

Never knew, I could feel this way
like I’ve never seen the sky before
Want to vanish inside your kiss
Everyday I’m loving you more and more
Listen to my heart can you hear it sings
Telling me to give you everything
Seasons may change
Winter to Spring
But I love you until the end of time
Come what may (chorus)

It is a ridiculously sappy song in some respects but it spoke volumes to me at this particular time and Ewan McGregor’s voice took my breath away. Aria’s leukemia has brought a flood of emotion, that before her illness, I knew only peripherally and in the confines of my imagination. These emotions are now very real and every day I love her more and more. Every day, I love life more and more. I began listening to my own heart that was suffocating in the despairing grasp of worry. I cut loose those straps so my heart could once again be filled with creative goodness that I am so desperate to share. Presently, we are in a seasonal change of winter to spring and as I look around the farm with Spring trying to make its show through the snow that keeps falling, I marvel at the beauty surrounding me. I am overwhelmed with the grace of love from not only my family and friends but from complete strangers. I find myself full of renewed strength to once again sing at the top of my lungs, “Come what may!”

It is no accident that at the beginning of this journey I was listening repeatedly to the raw and gritty songs of the Black Crowes. As I look back at that time, I realize just how perfect that music was for my mood and my place in life. It was as if I was going through my days biting down on a stick lodged between my teeth so I could bare the pain and suppress my screams. So often I was tempted to throw back a shot of whiskey to shake my head and senses as the burning fuel cascaded down my throat leaving me a little numb. I never did because I much prefer the smell of whiskey to the actual taste, but the voice and music of the Black Crowes worked just the same. Right now as March heads out like a lion into April, I’m in need of something much softer, more gentle and soothing to my senses and I found the remedy in the voice of Ewan McGregor.

As I sit here typing, I can hear the snow melting with gentle drops landing in a puddle outside the window. The sun is shining. It is Spring Break and I’m delighting in the simplicity of my days this week. So many little simple things; food, sleep, leisure, entertainment, music, friends, writing, reading, bathing, creating, pausing, praying, rejoicing, singing, playing all gentle powers gracefully lifting me to the edge of my quicksand. Here I am in the light once again, renewed, restored, rejuvenated and most importantly ready to share my goodness and yours!


It is incredible to witness how quickly things change. One moment in a day, I am full of joy and in an instant that joy is in tatters. Aria’s cancer has been a dizzying ride in that regard and it has taught me how to surrender in some ways. This isn’t to imply that I become a victim and give up. On the contrary, I have learned to become a fuller participant allowing Life to take me where it will. The emotional jarring, the ups and downs are just part of it and I wouldn’t be honest if I didn’t admit that it takes its toll.

I have learned however, that honesty is disarming and empowering. It is rejuvenating to admit when things are good and why they are so positive as well as document those things that are full of trial and sorrow. You cannot know one without the other. It is the pairing of seeming opposites that teaches us to dwell in its place of balance.

This emails shows you a moment of real sorrow. But know this, where there sorrow there is always joy to be recovered just around the bend. And so it is.

March 26, 2008
Subject: “Quicksand”

On January 15, 2008 I made a vow to myself to be completely honest with others, especially our children about what was happening. I knew that to be honest with others meant that I first had to be completely honest with myself. This is an easy thing to say and think but often a surprisingly difficult thing to do. For a little more than a week, I’ve had to face something about myself that has proven very challenging.

I am depressed.

There it is in all its simplistic glory. It may not be much of a surprise and it certainly isn’t all that surprising to me but it has been a difficult thing to admit nonetheless. How easy it would be to justify my sadness by identifying all the things that are happening that would cause just about anyone to become depressed. I certainly possess every reason to feel sad but therein lies the inherent stigma of depression. There are millions and millions of people who seem to have everything; family, friends, fortune and fame and still they are chronically sad. They seem to have no reason to be depressed and yet they are. This misunderstanding of depression, this lack of cause and effect is the disconnect that perpetuates the negativity associated with depression keeping so many, to my mind anyway, from seeking the help and doing the work that is necessary for healing. I’m lucky. I have reasons to be depressed and I know exactly what they are. Do I need therapy? Do I need to be on medication? I don’t think so, at least not yet. I remain open to the possibility though, while trying to remain honest.

In my sadness it is so tempting to explain my reasons, illustrating them in great detail, drawing you into the shadow of my sorrow. This is the downward spiral of self-pity that is wasteful and unhelpful. After several days of doing that to 3 women I hold most dear, I realize that that approach doesn’t contribute to my healing. It helps me feel as if I’m justified and understood, which offers me valuable temporary relief, but I remain depressed and so I know that I alone must do the work it requires to lift myself from shadow back toward light. It is important to say that I recognize that I am not alone. I am surrounded by loving, tender people and I know you are there. The process of healing, however, is mine and mine alone and it is this process to which I refer. It is also important to say that I face this process sturdy, confident and unafraid.

The signs of my inevitable depression have been extremely clear and I think they are worth describing. First and foremost, my emotions have been hovering just beneath the surface of daily interactions. Tears have broken the levy of my will with the least infraction. They come uninvited, against my will shattering what I had been trying to piece together. This past week my feminine hormones were raging and I found myself battling the age-old oppressive attempts to keep ‘female emotions’ suppressed for fear of becoming ‘hysterical’ ‘too emotional’ or ‘absurd.’ These emotions were as involuntary as the internal sensation and the external erection of an adolescent boy after drooling over a naughty magazine. I feel fortunate to have such a range of emotion and I embrace them. Still, the manner in which I deal with these emotions and this depression in general requires some refinement.

Another tell-tale sign of my depression is my short fuse with the kids and the way I bark at them in exasperation. My patience is thin and I find their demands burdensome, tiresome, and annoying. This isn’t right. It inhibits me from enjoying them and inhibits me from being truly present to them. They deserve more and certainly deserve better. Under non-depressed circumstances, I am a good mother; patient, kind and creative. With these depressed circumstances I am still a good person but with faltering mothering. This needs to change.

Recently my friend, David, told me that he had been reading Haiku, which I love and he wrote me one. It touched me deeply and it helped. As the universe would have it, my dear friend, Jenny, who lives in Scotland sent me a book of Zen Haiku. I’ve read the whole thing cover to cover and am now going back very slowly, savoring each word. I came across one yesterday that spoke to the very depth of my spirit.

For the man who says
He tires of his child
There are no flowers.
(Basho (1644- 1694))

How lucky I am to have so many holding me so tenderly and so close. I am not enjoying the things that I once enjoyed. I have no energy for those things it seems. Sewing leaves me feeling like I can’t finish what I want to start. Writing letters and thank you cards finds me with empty thoughts and a silent pen. Gardening is too daunting and overwhelming to consider. I don’t know where to begin so I simply look the other way and ignore Mother nature’s plea. I don’t have energy to connect with friends. I feel scattered and mired in my circumstance so much so that I find it hard to be fully present to those I hold so dear. If I allowed myself to be drawn into that completely, I would find myself feeling guilty and unworthy of friendship, which would then become a vicious cycle of with-drawl, retreat and continued sorrow. I see the darkness of that path very clearly. It isn’t one I’m choosing to travel. For now, I am only pacing before it and today, I noticed a ray of light over my shoulder. I’ve been glancing that way a lot already.

It is liberating to admit my depression. I don’t have to exercise any energy pretending I am anything other than what I am. I am still ok. I am still strong and I am still full of clarity. The only thing that remains to be addressed is how I intend to heal and to ‘move on.’ I like that phrase very much and I use it often with my children but I realize that it can be mildly dismissive reflecting our instant fix society of today. It is as if to say, that since I recognize my depression and all of its triggers that I ought to be able to move on effortlessly like a quick swipe of dirt off the bottoms of my clogs. Process doesn’t work this way. Moving on requires deliberate intention and the methodical passage of time that is such a gentle healer.

There is an image in my mind from a movie by Mel Gibson called “Apocalypto”. This is an extremely intense film filled with horrific brutality contrasted by exquisite breath-taking beauty. Without revealing too much of the film, the main character, Jaguar Paw, is dealt a life-altering circumstance from which he desperately tries to flee. His only purpose is to return to his beautiful pregnant wife and son whose fate we know but remains an unknown to him. He is an undaunted warrior. There is a time in the film where it looks as if he will conquer his circumstance. He is running. His eyes are focused on his family and everything about his run had me on the edge of my seat when suddenly he falls into a pit of quicksand. It is a shocking moment and despite my breathless panic, he remains completely calm. He sinks quickly holding his breath never once looking distressed. He is completely submerged but slowly, methodically, he lifts one arm from the sandy thin tar-like pool and then the other in a slow-motion swim that brings him to the edge. In a final burst of energy, he slowly lifts himself from the suction of darkness and there he stands. He is covered in black with only the brilliant contrast of his eyes and his teeth staring and seething with victory. He pauses only momentarily to catch his breath and perhaps contemplate his potential defeat but soon he moves on to face his purpose.

This is how I feel. It would be so tempting to panic and fall prey to my anxiety, flailing around helplessly. It would be so easy to succumb to the downward pulling force of depression, noticing the offers of help from others but carelessly pulling them down with me. However, like Jaguar Paw, I, too, am an undaunted warrior with a clear purpose. I have a family who needs me and I need them. This image has empowered me to move slowly, simply, methodically toward the edge to where healing is. I can imagine you on edge offering to throw me a vine, lend me hand, or bend a tree branch. The emotional quicksand that has engulfed me is something from which I must pull myself. I am being forced to muster strength and wisdom I never knew I had.

In this particular exercise of writing, I find myself that much closer to the edge, which is surrounded by all of you cheering me on. I can hear you and I can see you. Slowly, steadily and with deliberate truth, I will reach the edge, standing stronger, wiser and with a victorious smile. ~j

Insights of an old Soul

Subject: Insights of an old soul
March 21, 2008

Yesterday I was getting Aria dressed and we had the most fascinating conversation.
“Mom, I want to have a ponytail again. I want you to use my black baubles. But my hair is not going to be there and then it will grow back!”
I was so floored I didn’t know how to respond. It took me a moment to collect myself. It was the first time she expressed any longing for what her hair used to be.
“Aria, after all of your hair grows back you can decide if you want long or short hair. If you want long hair again then I will definitely use your black baubles.” I told her gently.
She smiled and said, “Mom, I’m just not myself because I am so sick. But when I’m not sick anymore, then I will be me again and I will be FREE FREE FREE!”
It was all I could do not to cry. I held her shoulders and said, “Aria, that is so insightful for someone who is only 4 years old. You are an old soul and I am so proud of you.”
“Hey Mom, what’s insightful?”
“Aria, to be insightful means that you are smart and sensitive. It means that you know who you are no matter what.”
Aria looked at me with a crooked smile and said, “That’s right! Come on, let’s go play!”
Imagine. I get to be her mother!


This is a classic tale of hoping for something and having it turn out to be something completely different. This is the expression of expectations. We expect something to be a certain way. We expect it because we desire it badly and hope for it and then we’re dashed when Life has something else in mind for us. We feel irritated, let-down, rigid, and almost incapable of being open in allowing Life to reveal what it desires so fixed are we in our imaginations. There’s this idea that if we hope for something badly enough, well then by jove, it ought to come to pass. Life doesn’t work this way. We know this but in our emotional immaturity we don’t endow ourselves with the tools to readily feel it while simultaneously knowing it.
I don’t know how to not have expectations at all. I’m learning how to have fewer of them as well as learning how to be more open to Life. Afterall, it is Life that dictates the way the wind blows and I must be a student of soaring so I can harness this energy instead of always battling with it. Like everything else, it is a process and this story simply shows how expectations came to be, were dashed and then Life stepped in and was allowed to be.

Subject: Expectations
March 21, 2008

Expectations come in all shapes and sizes and despite how I try to intellectualize them away from forming, they always do. My emotions can’t help themselves, so I get ‘my hopes up’, I ‘look forward’ to things, I ‘imagine how things are going to happen’ and invariably I suffer the consequence that often accompanies expectation, which is disappointment; not always but... I suppose the goal of the enlightened soul is to focus on having fewer and fewer expectations so disappointment is lessened in the process. This is not only a challenging endeavor but one, I suspect, will take me a life-time to achieve and even that is probably being optimistic!

One of the lessons of Aria’s illness, with specific respect to her, has been to have absolutely no expectations of the day. We are living moment to moment. Things, like her mood, her appetite, her disposition and general health can fluctuate magnificently in any given day. It has been critical to have flexible plans to accommodate any sudden change and I have greatly appreciated feeling like my mind is wide open to anything and everything that happens day to day. It has been a freeing experience, because I literally find myself waking up and saying, “Come what may....” I’m sincerely open to it and I’ve had to be. Truly any other approach would be almost impossible to tolerate because the chronic disappointment likely to follow would be overwhelming to the senses in addition to all that is already overwhelming. Yet, I recently allowed myself to be trapped in the sticky dreamy roach motel of my mind and create a get-away that amounted to something completely other than what I had hoped for and counted on.

We went to Seattle this past weekend so that Doc could receive a prestigious award (The Del Cole Award) for outstanding psychiatrist in community mental health. It is a state-wide honor with only one recipient and Doc was the first physician from the Eastern part of Washington State to receive the award since its inception some 40 years ago. We were positively thrilled! We made plans to stay at a nice hotel downtown right on the water. I wanted to see, hear, and smell the water. I felt called to it somehow and I remember telling my mom, “I can’t wait to discover what I’m supposed to learn there.” It was a loud and clear kind of thought to connect to water. We talked about going to the aquarium with the kids. We planned to have a beautiful Sunday morning brunch at the hotel, with gobs and gobs of fresh seafood. We planned to go to fisherman’s wharf to bring home a cooler filled with fresh seafood as well. It was a lovely fantasy and I was so looking forward to getting some much needed rejuvenation time not to mention a nice change of scenery. I was constantly reminding myself, however, not to get my hopes up and to stay wide open and flexible to whatever may come our way.

During the week of planning, making reservations, and creating imagery of what was to happen, Reo had a stomach bug. He was uncomfortable with a sour tummy for several days. He only vomited a few times but was clearly not himself. He, fortunately, never ran a temperature and didn’t show any other symptoms. Toward the end of the week, he turned the corner and was feeling much better. Aria, meanwhile, was beginning to suffer similar symptoms. She started complaining that her tummy felt “yucky” and sure enough vomited a few times but instantly bounced back. None of the looking for pity stuff that I do when I throw-up was part of her repertoire. She simply wanted to get on with playing and being 4 years old. But we were watching her very, very closely. We felt reassured that her counts were really good so that if she in fact had some kind of infection she would be able to fight it with very little consequence. On Friday, she was up and down a little but in general good spirits. She was so excited to be taking a road trip and fully participated in the packing process. Reo was over the moon to be driving to Seattle. He could hardly wait! Friday night, Aria seemed ok and we were keeping our fingers crossed. We got up early Saturday morning so we could be on the road by 7am or so. The kids were eating breakfast and talking nonstop about the trip and so excited. All was looking good! I was relieved. At 6 30 am Aria darted to the bathroom and threw-up. I was heartbroken and completely anxious. “Mama, my tummy feels yucky!” she moaned. I felt so bad for her and for myself and I desperately tried to keep myself out of the picture. Doc and I then began having a waffling conversation that I think happened mostly in our minds at incredible speed.

“Do we go? Do we not go? If we don’t go, she will be completely devastated and what if she’s feeling better? We’ll be stuck here all weekend feeling sad we didn’t take the risk and go. However, what if we go and she’s still up and down? What if it’s something other than some variant of Reo’s stomach bug? What if she gets really sick? Well, I guess there’s children’s hospital in Seattle. What do we do? What do we do?”

It is 7am now and Aria is dancing and singing, “I’m going to Seattle! Let’s go to Seattle! Hey, mom I’m r-e-a-d-y to gooooo! Let’s go already!” Doc and I looked at each other took deep breaths and said, “Let’s go!” We were pulling out of the driveway when I noticed that I wasn’t breathing. I told Doc, “I’m not breathing. I am so tense!” Doc acknowledged me and tried to reassure me that it would be what it is and we’re going with it. Doc is incredibly skilled at keeping expectations to a minimum. I tried to convince myself to be open but I was worried. I kept checking on Aria. “Honey, how you feeling? Are you ok?” She looked withdrawn and subdued. Her enthusiasm of just a few minutes ago was gone. My radar was heading toward red alert but I was trying to keep it at manageable yellowish-orange. Still, I couldn’t help myself from constantly asking her about her well-being. The nagging thought, “Should we be doing this?” was haunting me like a scary shadow. I decided to accept that since we were going I had to accept whatever happened.

Along the drive, Aria had moments when she was having fun and was playful and talkative and other moments when she was uncomfortable and feeling yucky. Clearly, she was dealing with something but it wasn’t enough to keep her down completely. I started thinking that everything was going to be fine. I allowed myself to play with my sticky expectations. I was thinking about the water and wondering about the view of the hotel room. I was imagining the smell of the salty air. I was hearing the water as it gently lapped against the pier. I was drooling over the brunch that was waiting for us the next morning. I was envisioning the early signs of Spring in Seattle with a few red buds beginning to awaken and perhaps some yellow dotting of forsythia around town. I was relaxing and thoroughly enjoying the road trip and the sights.

About an hour outside of town, Aria began moaning, “Mama, I feel yucky!”
“Aria, do you need to throw-up?” I said with a calm voice that was surprisingly detached from my screaming anxious mind.
“No, I just feel yucky.” she replied with resignation.
We drove on. We were a little more than the halfway point when Rianna woke up from her nap and started to wail. We figured it was time for a diaper change and a general potty break so we pulled into the nearest town. It was then that Aria said in a panic, “Dada, I need to ‘fro-up’! “ We quickly pulled over with Rianna now screaming, and got Aria out of the car. Sure enough, she vomited her guts out. The poor thing! I got Rianna out and sat in the front seat and nursed with her a little so she would calm down. Aria and Doc were outside the car for a few minutes. When she was finished, she announced, “That’s better!” in a light cheery voice. I was beginning to feel like a....like a....God, I don’t know what I was feeling like! It was such a strange and foreign sensation. I was completely anxious and hell-bent on having some fun at the same time! Up and down and up and down and up and down! It was almost like I couldn’t commit to feeling much of anything because I was constantly changing. We found a convenience store, used their bathroom and were on our way.

We finally arrived in Seattle and the kids were beyond thrilled. We were checking out all the tall buildings and all the people. It was fabulous. We found the hotel where Doc was going to receive his award and found parking and headed out. We had a good 20 minutes to spare, which was perfect! Doc carried Rianna, Aria rode in a stroller, and Reo, the big boy, walked on his own accord. As we walked out of the parking garage, we noticed that a parade was happening. It was a St. Patrick’s Day parade of some kind. It was so fun! We went into the hotel and tried to find where the meeting was going to be held. We met a few people and exchanged some small talk for a minute or two when Aria said she needed to “fro-up” again. Doc scooped her up and we raced to the nearest bathroom. I took her in and as she clutched the sides of the toilet bowl, she was doing a sort of backward kick dance with her legs and feet. I was watching her and in my mind I was thinking, “Is she manipulating us? Is this some kind of weird 4 year old attention-getting behavior? Does she really feel yucky? (I answered, ‘of course she feels yucky. She just threw up an hour ago!’) What’s going on?” Nothing happened. “No fro-up Mama!” she said. So we went back outside to join Reo, Rianna and Doc. I was feeling a little dismayed. It was so hard to know what to think about how Aria was feeling. I decided that she truly wasn’t feeling well and was probably nauseated and just didn’t know what to do. Meanwhile, people were gathering for the luncheon award presentation meeting. I was very aware that we were the only people there with kids. “ Oh, you brought your whole family!” was something repeated several times most of which was very sincere. Aria was quietly sitting in her stroller picking at her dry lips. Reo was standing around observing the goings-on. Rianna wanted nothing more than to climb the stone steps just outside of the meeting room. She darted toward them at every single opportunity. I was chasing her, grabbing her, pulling her back down constantly as was Doc, who was also trying to have conversations with some of his colleagues. At one point I was taking Aria to the water fountain to have a drink, when Rianna wiggled away from Doc and within a second or two tried scrambling up the steps only to trip and bonk her chin. A nice shreeeeeeeeking-fest ensued, which only added to the potpourri of stress we were already feeling.

Deep Breath! Doc asked if it would be at all possible to be bumped to the beginning of the program and everyone was very accommodating. I didn’t hear the introduction because I was trying to hold Rianna who was doing everything in her power to get out of my arms. She was completely irritated with me and let me know. Aria was in her stroller speaking like a mouse telling me she felt yucky. I heard applause and told Reo to come to the doorway where we were standing (we didn’t even bother finding a place to sit) but he was standing in the lobby area with his hands over his ears. The applause on top of everything else was obviously too much for him. Bummer. I did manage to snap a few pictures but haven’t even looked at them yet to see if they came out. Doc went up to the podium and began his speech. Rianna had had enough and I let her down. She immediately headed for the room and the sound of her Dada’s voice. It was so much fun watching her waddle through the maze of people and see the disarmed look on their faces. It was a very nice bit of relief for me. “Hey, Mom”...”Yes Aria?” “I think I need to fro-up?” “ahhhhhh crappity-crap to crapster-crapola!” was what I heard myself say in my head, but what I actually said reflects my stellar parenting which was, “oh no..really honey? Do you think you can wait?” Ugh!! I can’t believe I said it but what’s worse is I meant it! She gave me a fish-face that was pouty and nodded her head yes. I kept checking on her and in the interim heard things like ‘Spokane’, ‘residents’, ‘some challenges’, ‘amazing people’...I checked on Reo. He was still in the lobby with his hands over his ears. Rianna was in someone’s arms perfectly content. I remained hovering over Aria ready to jettison us to the bathroom as needed. I finally made eye contact with Doc and felt tears well in my eyes when he said, “I am deeply moved and honored to accept this award. Thank you.” Applause! Way to go Doc!! I had such a huge smile. It was wonderful. He grabbed Rianna who was smiling too. Aria was not and neither was Reo. We were ready to hit the road and head to our hotel room and re-group, which is exactly what we did until we were ambushed by another doctor in the lobby on the way out. “Dr. Layton...Excuse me Dr. Layton!! I know you need to get going but I just need a few minutes of your time.” Doc being the completely noble man that he is smiled sincerely and began a lovely conversation with this man. I, on the other hand, was trying to find the nearest tree in which to sharpen my claws so I could scratch this intruder’s eyes out. I was infuriated that this man was so set on meeting his own agenda that he could not for a moment take notice of the obvious, or at least what I thought was obvious, pressure cooker our family was in. Doc introduced us and I made no pretense whatsoever at being pleased to meet him. I wouldn’t say I was vicious but I would say that in that moment I would have done anything to have Harry Potter’s wand and begin casting a witchy spell. I recognize that he was completely innocent to all the fundamental stressors creating the tension we were feeling, but the man never gave Doc the opportunity to say, ‘You know, I would love to talk with you but now really isn’t a good time.” That was the thing I found so irritating.

We left and walked back to the parking garage when we noticed a St. Patrick’s Day parade happening several blocks down the road. All of a sudden, out of a nowhere a cannon was fired that literally shook the building. I froze and my heart raced until I figured out the source of the cannon but poor Reo was completely stunned. He stood rigid almost unable to move. We coaxed him finally encouraging him to race us to the entrance of the elevator but the entire time he had his hands over his ears. So far, we were not having much fun and I was starting to feel a little weepy about it. After a short drive through downtown, we arrived at the hotel. It was lovely and the view of the water was everything I had hoped it would be. I felt myself sigh with relief. We checked in and were told that our room wasn’t going to be available for another 3 - 4 hours, which was rather shocking but we went with it. We requested a rush but felt flexible enough to go and enjoy a nice lunch and just take our time. We had an exquisite lunch and indeed our room was available before we finished dining. Everyone was so accommodating and cheerful. I was beginning to relax. We began talking about taking a walk, checking out the aquarium and so forth. We settled in and all the kids wanted to do was watch a movie. By this time, Doc and I were so wiped that we went ahead and let them. It was a nice little break.

I sat on the bed staring out a large picture window I had opened slightly at the busyness of Elliot Bay. I watched the ferries float by and smiled at the disconnect I was experiencing. I could only hear them as a sort of hypnotic hum from my hotel room, which is in contrast to their roar when riding upon them. I watched tug-boats chug along to make their connection with some of the enormous cargo ships anchored in the bay. I told myself to throw some of the anxiety I was feeling into the water and let it float away. I was able to nap for a few a minutes and I was awakened by the screeching sounds of seagulls, which was music to my ears. The kids finished their movie and begged to watch another one but Doc and I agreed that we all needed some fresh air. Oh that salty fresh air I was craving was right out our hotel. After some creative persuasion, we packed up and headed out.

We walked under beautiful open bamboo awnings that had wysteria woven up and around and in and out and on top of the simple wooden slats. They were not yet budding but it was easy to imagine the brilliance of Spring over the next month or two with clumps of lavender flowers swaying in the wind. We turned the corner to walk along the sidewalk above the water and I took my first deep breath of salty fresh air only to have my senses assaulted with a moderate whiff of,... sewer. “OH! So not the smell of salty air I was hoping for!” I said to myself. I quickly looked around and noted for what seemed like the first time that we were smack dab downtown Seattle. Fresh salty air? What was I thinking? It was then that I decided to move on and focus my attention to listening to the lapping water. I had glanced at a nearby pier and was watching the wake of a passing boat ripple toward me awaiting the gentle caressing sound as it lapped against the pylons, like sentinels standing in the water. This was the sound I was dreaming of hearing. In that moment, a distant rumbling made its presence known to my ears and before I could turn my head to find the source of the noise, a train came thundering past. I burst out laughing and found myself saying, “Ok, I get it! Clearly, this weekend is supposed to be something completely different than what I had thought I wanted or even dared to imagine. I get it! I get it! I get it!” I felt a little lighter somehow. I was definitely disappointed but the trap of expectation was so glaringly present that I could no longer ignore it. I had to exercise my flexibility and allow whatever was supposed to happen simply happen.

We arrived back to our hotel room and it was around dinner-time. We ordered service, watched another movie with the kids and basically chilled out. Aria was subdued and complained that she felt yucky. I was very aware that I was still worried and second guessing the decision to make the trip. Around 10 30 just after Doc and I had turned off the lights for our bed-time, Aria shot up like a dart and told Doc that she needed to throw-up. He grabbed her and raced to the bathroom where once again she threw her guts up. That was it for me. I burst into tears and was ready to pack up and head home. I knew intellectually that the weekend wasn’t supposed to be anything that I had expected or wanted. I knew that it would behoove me to go with the flow and just let things be what they were going to be but emotionally I wasn’t fully prepared to face that and I was crushed. I was so disappointed and filled with self-pity that the energy I knew it would take to get me out of my sadness was just too much. It dawned on me how easy it would be to succumb to this kind of sorrow and stay wallowed in it recruiting others with similar feelings and circumstances. I told Doc that I was ready to pack up and he said to me, “Let’s just rest...don’t worry about sleep...just get some rest.” His words were warm and soothing. I went back to bed and cuddled with Reo. I stayed awake a long, long time staring out the picture window at the bay.

I noticed a light in the distance. It was pulsing soft and then bright and soft and bright. It was a lighthouse and I was instantly drawn to it like a siren’s call. I tried matching my breath to its pulse but it was too fast so my breathing wasn’t relaxed. I heard myself say, “in and out and in and out” matching the rhythm of the light but those words weren’t resonating with me. In only a few moments, the words, “accept-don’t-accept, accept-don’t-accept” came to me and for several minutes I repeated that phrase partnered with the lighthouse. It calmed me but didn’t heal me. I felt like I was out of the pit of my self-pity though and could start the process of getting over my disappointment.

At that moment the cliché, “making lemonade out of lemons” came into my stream of consciousness and I found yet another cliché that sounds good but leaves me feeling empty and irritated. I imagined holding a lemon in one hand and a glass of lemonade in the other hand as if to say it is possible to take this beautiful bitter/sour lemon and morph it into this sweet refreshing beverage in a matter of a glance. I was annoyed that the whole process of making lemonade from lemons is ignored in this cliché and ‘process’ is the operative word here. There is a distinct and specific process one must take in order to fulfill this cliché and yet the variables involved are as colorful as people. I knew I was having a lemon of a time and I knew that I was being called to make lemonade. What I hadn’t yet figured out was the process to get me there, although I knew it would take some time, some reflection and some serious soul searching.
We woke up very early the next morning and Aria was cheerful. We were mildly hopeful that we might be able to go to brunch and buy the fresh salmon we were hoping to bring home. Within 30 minutes of being awake though, she was sick again and we knew it was time to leave. We packed up quickly. We cancelled our reservation to brunch and made ready to check out of the hotel. I took one last look at the bay and the gentle waves. In my mind’s eye, I was holding a glass of lemonade. With a tear or two mixed in, I slowly poured my self-defeating disappointment into the bay and watched it blend with the salty ‘sewery’ water below. I expressed my gratitude for the view and for the lessons that I was still forcing myself to learn. I turned around, left the room and was on my way home.

Monday, June 29, 2009


Subject: Joy
Date: March 11, 2008

I thought you might enjoy seeing some pure joy! This is Aria and I
playing with the computer camera! It was so much fun and we giggled
and laughed for a long, long time together! My love and smiles to
you! ~j

A small accomplishment

This email was inspired after reading and hearing stories of others dealing with crisis. It all boiled down to spending time with your kids because they are all that matters. For whatever reason, that idea struck a nerve. It has always struck a nerve in me, hitting a resonant chord of something sounding good but not being entirely true. On the surface this may sound horrid but it wasn’t until my own crisis that I could fully understand the truth of what had haunted me.

Yes, my children are the most important persons in the world to me. I would do anything for them. They aren’t however, the only important entities to my life and I discovered that even in crisis there is a need to balance all those things that are important and essential, in order to remain steadfast, resilient and true to the process of being utterly available to those who need me most.

Subject: a small accomplishment
Date: March 11, 2008

There are so many ways to gain a sense of accomplishment in any given day. I know this intellectually but I have often struggled with that idea as a full-time stay at home mother. I used to think that the start-to-finish projects of a household were the key to my sense of accomplishment. My children have once again taught me a completely different way of looking at that notion. I remember becoming easily frustrated about starting something, even a mundane chore like
laundry and not being able to finish it because of the constant interruptions the day sees with children. There are many times even now when I feel like I have some sort of mother’s attention deficit disorder where I begin one thing for a few minutes only to have my attention turned to something else for another minute or two and then I’m needed for yet something else and then something else and then perhaps I can return to my original task. That is, if I still remember what it was. It is rare that I accomplish much of anything and yet I accomplish a great many things. How is this paradox possible?

I nibble at things all day long and that nibbling as a sustaining force has taken me a long time to embrace. Still, it is a necessary approach and I find that after a few days of nibbling, suddenly accomplished things are witnessed.
With Aria’s illness and the crisis it brought my family I felt compelled to examine this even further. I had read stories of other peoples’ crisis, stories of tragedy and illness that forced families to cope and change and grow. I suppose like most people, I would read these tales and wonder, “God, what if that ever happened to me?” or “I hope that never happens to me!” or “How do these people do it?”

For some reason the advice of ‘letting things go’ and ‘nothing is more important than your children’ always stayed with me in a weird negative kind of way. It felt cliché and I’ve always abhorred clichés. I’ve thought about it often, even before I had children. Part of me thought the sentiments were obvious. Of course, nothing is more important than your children BUT (and it is a big but) there are still a million little things that need to get done. Don’t they? When I became a mother, I struggled with this issue: putting my children before anything and everything else. I found that I couldn’t do it. Sometimes they forced the issue and their needs preceded all others but sometimes and often even, they have been forced to wait. They have had to learn to entertain themselves, to find amusement in all matter of things and places. I had tinges of guilt that I wasn’t the kind of mother who had all kinds of enriching activities, in which I felt equally engaged. “Spending time with your children, playing with your children is the MOST IMPORTANT thing you can do…” is something that I frequently heard in my head. I would face myself at the end of the day and know that I hadn’t been that kind of mother. I’ve had to accept that I’m not an entertainer-type mother. I can be that kind of mother a lot of the time, but not all of the time. I’m a selfish mother, who needs creative outlets and I demand that my children find their way when I’m in need of replenishing time.

Some may think this all sounds very natural. Of course mothers need time for themselves and children benefit from developing skills to manage their boredom. We mothers can’t constantly be entertaining our children but I tell you, I found myself overloaded with this kind of advice. So much so, that every time I had a little time for myself I felt that I had to rationalize and defend it. Not only that, but I felt guilty about it. These ideas came flooding back to me in full force when Aria became sick.

Aria’s leukemia and her hospital stay and all the subsequent unknowns were an almost drowning force. I found myself in the hospital with her, hearing a voice say, “Spend time with your kids. Play with your kids. Nothing else matters--just your kids. Your kids are the most important things in the world. Cherish your kids. Let everything else go. Let the laundry pile. Let the dishes soak. Let someone else cook the food. Hire someone to clean. Spend all your time with your kids.” So I did and I learned a very valuable thing about myself. I learned that I need a sense of accomplishment. I learned that those things that I felt encouraged to let go still needed to get done. I felt completely out of control and I know and embrace that control is an illusion but there are still many things that can be controlled and those things were very comforting to me in crisis.

I remember being in the hospital thinking about stories I had read. Women, mothers who just wanted to spend every single moment with their sick and sometimes dying children. I understood that and for a short time I did that. Aria guided me. So often I wanted to embrace her and touch her and kiss her and she wanted to be left alone. So often I wanted to stare at her and would, only to be scolded, “Mom, stop looking at me! Leave me alone!” What was I to do? I had all this advice ringing in my head to spend time with her, be with her and I was but she didn’t want to be engaged in any sort of way. I didn’t know it at the time, but she was spending energy learning to build a private cocoon for healing.

I turned to Reo and Rianna trying to savor quality time with them but my heart and my spirit were flat and focused with worry and sorrow about Aria. They could sense this and so their interests had nothing to do with playing games with me. They wanted to play with toys in the room and be in the presence of everyone without being fully engaged.

I found myself needing that sense of accomplishment. What could I do? I needed to DO something. I needed to be busy and distracted. I needed to feel like I was actively getting something done. So I turned my attention to all those things that I remember being encouraged to let go. I found doing laundry incredibly therapeutic. Being on top of that pile and getting it done filled me with a great sense of accomplishment. Tidying toys was a wonderful mindless little task too. Being industrious and tackling all kinds of chores was tremendously satisfying. I learned that as much as I wanted to hold Aria and be with her, that wasn’t what she wanted. I followed her lead and didn’t feel guilty. I felt sad because my need in this regard was not being met, but I had to remind myself that her needs were more important and being in contact with me was not one of them.

Now that we are home and she is so much better, I don’t find that I am more engaged and playful and entertaining as a mother per se but I am more sensitive about it. I suppose I have a greater appreciation of what quality time with the kids is, especially Aria. I savor moments with her and I find myself savoring more and more moments with Reo and Rianna. The little details of what they say and do seem heightened somehow. It is a wonderful new sense. It is a real gift.

My sense of accomplishment has changed as well. I’ve had to let a lot of things go now that we are no longer in crisis and I am perfectly accepting of that. What used to provide a sense of success for the day (even before Aria became sick) like cleaning the house, ironing a load of clothes, sewing a new dress, and so forth has completely changed. If I get part of any one of those things done, I am fulfilled. Not only that but I’m finding satisfaction is the strangest of places these days!

The other day, Aria and Rianna were taking a bath. I found myself engrossed by Rianna. She is such a beautiful little baby, or rather big baby! She has beefy sturdy legs that drew me in. She’s inquisitive and worked for a long time placing a cap on and off a bottle of bubbles. Her expression was one of pure concentration. It was the most stunning thing to watch. Aria completely ignored Rianna and busied herself creating a bath-time world that only 4 year olds understand. So I was perfectly content focusing all of my attention on Rianna, who by the way has no fear whatsoever so she requires a tremendous amount of supervision.

As I was watching her, I was reviewing the day, considering all that I had done or in this case hadn’t done. I hadn’t finished the laundry. I hadn’t made the one phone call that Doc asked that I try to do. I hadn’t run the dishwasher. I hadn’t written the 2 thank you letters that I had set on the table. I hadn’t prepared a dinner. I was beginning to feel dismayed. The list was long and as I was sitting there I was able to think of several other things so I decided to switch gears. What had I accomplished? What did I do today besides park myself on the couch with the kids and watch a movie? I played a little. I read some books. Reo and I managed to do some school activities. “I, uh, ummmm, hmmmm what else? Was there anything else? That’s it? That’s all you got done today?” droned my hyper- critical voice that sometimes rears its ugly head. But, before could begin the process of pecking at my self-esteem, I looked at Rianna and with a quick swipe of my finger across her nose, it happened. I had just picked the biggest booger. It was enormous and as it sat perched upon my index finger I was suddenly swept by a wonderful sense of satisfying accomplishment. I was in stitches, belly-laughing once again at how completely absurd I can be. I sat there on the purple bath mat realizing that I am a first class baby nose picker! I hadn’t ever really thought about it before but yes, indeed, as I look back I have experienced several satisfying nose picking operations. I pondered the whole process. How adorable everything is with babies including these nostril barricades. There is a time, however, when those things are a lot less cute and I would never dream of doing anything like that. I would never consider swiping at Reo’s nose for instance. The idea is completely disgusting but it is strange that it is far less disgusting coming from my 15 month old. Odd, how things change.

I didn’t do anything gross like wipe it on my skirt or the bath mat itself. I grabbed a nice proper square of toilet paper and flushed the whole nonsense away. I giggled and giggled. I felt very grateful to sit back down and in the moment embrace the idea that sometimes in my life, the accomplishment and satisfaction of mothering, even amidst crisis, can be found in those quirky funny little nothing moments of just living.

Friday, June 26, 2009

Aria is Super!

It is Friday March 7, 2008, early evening. I doubt I will get very far with this email but I thought while I had a little momentum I would gather some thoughts for you.

Let me begin with the most important news of the day and that is that Aria is GREAT! She is just terrific! She is active and talkative. Her imagination is once again overflowing with the gorgeous view of a child. She has been wearing her ballerina tutu that she received from her cousin and has been dancing and twirling. It brings me such unfathomable happiness to have her back in this way. I am so relieved to witness her healing knowing full well that she is still very sick and will face some intense battles later on. For now, however, she is guiding me through these present moments and I am savoring every little morsel. I won’t kid you though. She is so fabulous that she is also, once again, annoying, persistent, pouty, whiney, silly, and stubborn to name just of few of her other attributes. Aria is a strong-willed 4-year-old, full of steam, which is adorable and obnoxious at the same time. I would love to say that since her illness these annoying little 4 year old attributes have lightened somehow, have become less important and less irritating. Alas, being only in the infancy stages of enlightenment, her 4-year-old quirks can drive me crazy; illness or no illness! I do take greater notice however and I find myself celebrating her more even when she is in the throws of being 4. So in truth, in some ways, it is lighter and more endearing and I’m highly aware that she is so much better today than even a week ago.

Clinic today was not at all what we had been planning all week nor what we had hoped would happen. That is, we had hoped and planned on all being at clinic together as a family. As life would happen, I came down with a bug early in the week. It started with an “uh-oh” scratchy throat that turned into a sinus stuffy-thing but lasted only a day or so. I have a little remnant of it now but nothing particularly bothersome. I passed it along to Rianna who for the last few days has had only a mild runny nose. But I also passed some variation to Reo who surprisingly had been super all week until yesterday afternoon when he completely melted down. Suddenly, out of nowhere, he was fussy and whining and crying for his dad and complaining that his knees hurt and his tummy hurt. He was just a puddle at one point, which was really concerning. He was so not himself and of course I found myself traveling down, “what kind of horrible life threatening illness is this going to be?” I didn’t allow that thought to form into anything more than a flickering notion, however. I just cuddled with him and monitored him. He felt warm but not really feverish. When Doc finally came home, he helped Reo into his pajamas and put him to bed around 6 o’clock where he slept for a good 2 hours. We heard him stir and both checked on him. He simply wanted to cuddle but then suddenly said he needed to throw-up! Oh Boy! Here we go. Sure enough, he was sick. We checked his temperature and he had only a slight fever (99.6). He felt better but needed some reassurance so we cuddled for a little while and then he slept the rest of the night. Doc and I talked about Plan B for clinic the next day since Aria’s counts have been so high, her risk isn’t all that great but there are plenty of other children whose counts aren’t nearly as good who are at great risk! We decided to take the ‘wait and see’ approach.

This morning around 5am Doc heard a stirring that he thought was Aria. He shot out of bed like a dart, only to find Reo crawling on his hands and knees down the hallway, whimpering, “Dada, I feel yucky!” Doc brought him into our bed for a little while but the dogs started their morning howling serenade so he and Reo decided to head downstairs from some breakfast. Reo promptly threw up once again and when I came downstairs an hour later, he was curled on the couch covered in a blanket. He was not going anywhere, which meant neither were Rianna or I. Bummer!! It was an odd feeling to know that I wasn’t going to be there at clinic. I know that my role at clinic is nothing more than to watch Reo and Rianna and comfort Aria once in a while, but I don’t play an active role in her treatment. That is Doc’s job right now. He accompanies her for everything, while I stay in the background. Still, I’m there. I have access to her doctor, the nurses and support staff. I get my weekly reassurance injection when I’m there so being home left me feeling anxious, as if I was missing out. Although I wasn’t doing this, I felt like if I had a handkerchief in my hands I’d be sitting around wringing it ceaselessly. It was a very strange feeling to dread being at clinic but wanting to be there and not being able to do so.

Doc and Aria headed to clinic by themselves around 10am. I didn’t have a handkerchief in my hand but a telephone instead. Fortunately, both Reo and Rianna had nice naps so I was able to spend my time talking to ‘tech support’ people about our email, which is acting up again. Grrrrrrr! Still, the folks I spoke with were delightful and lovely and I was so grateful that I could have such concentrated time to focus on problem solving. Concentrated time is such a gift!

Doc and Aria arrived home around 2 pm. Aria told me that she was “brave during the poke part”. She also reminded me that her blood was nice and red. So far so good! Her labs were fantastic! Her cholesterol is back to normal so she no longer has to take that medication. Her hematocrit showed a nice little jump to 26, which is still well below normal but an improvement, which we have seen results in her overall energy level and her coloring. White blood cell and red blood cell counts are normal. Her spinal tap procedure, which is the last one she’ll have to have for this phase of treatment, went off without a hitch. Dr. Trobaugh continues to be very pleased with her progress and didn’t have any real concerns about the little bug floating through our family right now. It was bound to happen and we are grateful that it happened when Aria’s resilience is so high. We feel very very lucky indeed!

Doc said that he and Aria played some games and she even made some art projects using markers and foam stickers. This is only the second time she has actually played in the playroom. It was nice.

Doc and I are exactly like most male/female couples out there I suspect. I’m the wordy, “I said” and then “she said” and then “I said” and then “he said” type. I’m all about details; the little itty-bitty details. Doc is more the big picture kinda guy. I know this and I knew and accepted that I would have to do without my full reassurance injection this week. At some point during the afternoon I asked Doc,
“So honey, were you able to have a conversation with Dr. Trobaugh? Is she still pleased with Aria’s progress?”
“Oh yeah. Of course.” He replied.
I asked, “Well, what did she have to say?” details, I’m looking for those “she said……” details.
“Oh, (big sigh) you know..she thinks Aria is doing great. No real concerns. We’re just moving right along.”

This SO didn’t do it for me! But God love Doc. He knows me so well. His sigh told me everything. He was not up to the task of telling me the “nitty-gritty, there are this many ceiling tiles, the walls are this color, Dr. Trobaugh’s sweater was this texture and she wore her hair this way” details of the day. Clinic days are exhausting no matter what the circumstance. Not to mention, that Doc is not I. He doesn’t process the world as I do and therefore it isn’t his nature to exercise the “girlie skills” I so crave. Whatever anxiety I needed reassured for the day, he was able in his way to subdue.

Doc was so relieved when he got home. Even though everything is great and all that we can hope for, it is still so incredibly stressful to be in clinic. His neck was stiff and his back was tense. He spent the rest of the afternoon wandering the property assessing spring work. Fortunately, we don’t have to go to clinic next Friday! We actually have our first Friday off in 2 months! HEAVEN!! We are halfway done with our Consolidation phase of treatment and feel so fortunate that everything is going well.

We are planning to make a quick trip to Seattle next Saturday so Doc can receive a very special and prestigious award. He is the recipient of the Del Cole Award from the Washington State Psychiatric Association. It is awarded to an outstanding physician serving the realm of community mental health. I am so incredibly proud of him! I insisted that if Aria was well enough that we all make it to Seattle to watch him receive this great honor. It looks like we are going to be able to make that happen and I am so thrilled! A little change of scenery ought to be really really fun. It is going to be a whirlwind trip. We’ll head out on Saturday morning for the award ceremony in the early afternoon and then come home Sunday sometime. My 3 very dear Goddess friends will already be at the farm on Sunday waiting for us. They are spending a week to celebrate 2008 Goddess-Fest. I have no idea what kind of nonsense and fun we’ll create but I can guarantee you that after a week in their energy, I’ll find my stores of energy and creativity re-stocked to over-flowing. The magic of friendship is beyond my words. I’m in charge of creating the ‘theme’ so to speak for Goddess-Fest so I imagine that this year we’ll be focusing on “healing.” It is so obvious yet so profound.

We are all hurting, aching, longing, ailing, fragile, damaged people. This is not what defines us. It may be what consumes us for periods of time, but it does not reflect our true selves. When my Goddesses arrive, we examine these things deeply through all matter of crazy ways. We color. We craft. We sew. We dance and sing. We talk until ungodly hours. We cook. We laugh and we cry. We hug and kiss. We play. We pray. We build fires. We weave ourselves to one another creating a mesh that protects and covers us. It is such an amazing weave that it extends beyond us and is able to catch others when they stumble into our presence. We all have this and what a brilliant thing to possess.

They, like you, have stumbled into my presence adding to the woven mesh I call myself. I am stronger, more colorful, and better able to catch and hold others because of you. This is a beautiful and tender connection that never ceases to amaze and entangle me with wonderment.

Being Alone

I’ve included at the end of this email 2 responses from my Dad, Gene Hayes. My parents are by far my biggest and devoted fans. They are also hopelessly biased in their view of me, which makes me giggle every time I read a response from my dad. Nevertheless, I wanted to share with you some of the kindness I’ve received from them every day of my life. I am infinitely blessed.

By the way, my dad still calls me Julie, the name of my youth! It is incredibly endearing to me.

Subject: Being Alone
Date: March 5, 2008

I received a couple of beautiful emails yesterday remarking that I seem alone along with encouraging reminders to the contrary. I fear that my introspection and intense self-analysis has led some people to worry that I feel alone, whether that is physical or spiritual, I do not know. So, I thought I would take this moment to consider that. ‘Being alone.’

Many have reminded me that I am most definitely not alone because the support I have is immense. I’m very much aware of this. My initial reaction is to say, “Oh, heavens! I’m not alone! Just look at all the amazing people with me! My husband is right there with me every single step of the way as are my many friends and family and their friends and family and so on and so on. I am most definitely not alone.” This is very true and I want to make sure each and every one of you knows and understands that the emails you send, the cyber-hugs and kisses, the cards, the gifts, phone calls, visits, prayers, and so forth are powerful reminders just how involved you all are. I feel you with me every single day.

I wonder if the “alone-ness” you may be sensing is nothing more than the time I spend with my thoughts, which flood my being constantly. Often what I have portrayed here are those thoughts that fill me with doubt and insecurity and I have not done a very good job detailing the many thoughts that bring me light and cheer. There are so many times throughout my day when I think about the mini-miracles, like friends, that happen that bring be incredible joy. This morning, I walked outside noticing the patchy snow that covers our land and the smell of Spring in the air. I glanced at my rose garden where my dogs like to sun themselves. Despite the digging and the weight of large dogs, I noticed 2 snowdrops beginning to flower in rebellion! What a lovely little miracle and reminder of life’s magnificence! This kind of thing happens all day long!

Doc asked me about these emails and specifically whether I felt alone particularly in my spirit. I sensed that he was worried. I asked him if the thought of me feeling alone as interpreted by some of you hurt his feelings somehow. He reassured that his concern was nothing more than making certain I know I am not alone. I tried to reassure him that I am exceedingly aware of the support of those who love and care for us deeply. Spiritually, I don’t feel alone either and if anything, Aria’s illness and my introspection has forced me to examine just how spiritually filled and fulfilled I am. Still, I wonder if what I write, which is horribly skewed with respect to presenting only my opinion, has led some of you to be concerned. I realize that Doc’s voice is not being heard here and his presentation is not being well represented, which may give the impression that I am handling this on my own. Doc is very much with me. Please be assured of that! But, you see, I cannot write for Doc. I cannot write his thoughts even those things we share. There is a need to protect his privacy in this regard and should he decide to share his thoughts, he will. Doc’s unconditional commitment to our family is one of his finest virtues because it permeates every aspect of his life. I don’t worry about me because of his strength and his fortitude. Furthermore, I cannot emphasize the generosity of people, even complete strangers that is beyond my expression. There are so many days when I will receive some kindness that makes me feel as if I’m walking upon petals that someone has thrown before my feet, gently paving the way, adding color to the day. The force of love in this regard has been very powerful and something I am only beginning to understand.

When I think about my personal space and life, Doc and I are very much a singular unit and we function as such. When Doc and I are off kilter for whatever reason, I am not well and neither is he. It is as if a physical aspect of myself is ill when he and I are not on the same page. I cannot live in that state for any length of time, so Doc and I are constantly in conversation about what we think and where we are on this journey together. Doc is my grounding force. He is my warm blanket when I’m shivering. He is my calming voice when I’m worried. He is my reason to constantly strive for kindness and joy. Doc is someone who makes me feel that I am the most beautiful thing ever created. He is a gift to me and I to him.
I have no doubt whatsoever that there are so many people keeping us in the light of goodness and positive thinking. I cannot even fathom how people have Aria in their daily thoughts. It is extremely humbling for me to consider and I am so, so, so grateful. It is important to say, I think, that despite being surrounded by all this beautiful energy, ‘being alone’ is a comfortable place for me. There are times when I definitely feel alone and I’m still very sound. We all know there is a distinct difference between feeling alone and feeling lonely. I wrote to my cousin Bryan that although I was not born alone (I’m a twin), I am certain that I will journey death alone, so being in my own company has always been something I wanted to trust and enjoy. In my arrogance, I actually enjoy my company a great deal. Finding ‘alone time’ is something I constantly seek. I find it when I garden or when I sew or when I wander through the pasture or walk our labrynth. My thoughts are so noisy that I don’t feel isolated or abandoned in any way. On the contrary, I am accompanied by all kinds of creative people inspiring me, spiritual people guiding me as well as all of my tender and dear friends and family comforting me. In my ‘alone-ness’ I am anything but lonely!

Heavens! It is a fine thing to spend time alone and an even finer thing knowing
that the Spirit that connects us all is what keeps me focused on what the present
has to show me as I journey in solitude.

My Dear Ones,

Those of you who know me well may wonder why I make no comment on the attached email from Julie, today. Suffice to say, as with most of Julie’s messages, “It speaks for itself.” It has caused me to think, though, and I need time to pull my thoughts together. Be grateful and be challenged!!

Peace !

Gene Hayes

These messages, like Julie’s previous message on “Being Alone” seem to me to add up to a most effective reminder of what Jesus’ teachings about LOVE truly mean. She reflects a level of trust and respect for the “personhood” of others – the wishing well for them – which Jesus insisted was the basis for the greatest Commandment(s) – Love of God and Love of neighbor as one’s self. Indeed, I don’t think anyone can truly love another without loving one’s self. It is the latter part of the Commandment that so many seem to have difficulty with. The willingness to take time to be alone with who you are, why you are as you find yourself, your simple acceptance of what you find you truly are (instead of the image of what you think you are or hope you are), and your decision to commit to changing the things you find about yourself that you don’t like is crucial, here. Julie’s thoughts help to focus us on this process, I think. Finally, the realization that we are never “alone,” that God and others are with us, rooting for us and encouraging us, makes the self-analysis part of being human a bit easier to participate in.

Peace !

Gene Hayes

Aria's Consolidation Phase

I think very early on I realized that Aria’s leukemia would be a challenge on many levels, not the least of which was battling the cancer itself. I realize now that I was thrown into a hyper-drive of a self-discovery of sorts. I wasn’t going to be able to deny my feelings no matter how much I may have wanted to. This was intimidating because we aren’t taught well how to handle the dark side of ourselves. As a matter of fact we hear over and over about the importance of staying positive and as much as I believe that to be true, I was discovering that it is also a rather ineffective form of denial. I learned that the more honest I was about how I was feeling, the more hopeful I became, the more trusting and open too. This email is in some ways the beginning of that self-discovery.

Subject: Aria’s consolidation part 2
Date: March 2, 2008

As you know, Aria is in Phase 2 of her treatment plan. For the sake of review, there are 4 major treatment phases; Induction, Consolidation, Interim Maintenance, Delayed Intensification. These phases vary in terms of length depending upon a child’s particular risk factors and how well they are doing during a particular phase. Aria is considered standard risk so her treatment will follow this time line; Consolidation is 4 weeks, Interim Maintenance and Delayed Intensification are 8 weeks each. After the completion of these phases Aria will enter the longest treatment phase called Maintenance, which is ~12 months long. Reaching maintenance is by far what people are striving for and every time I meet a parent with a child with ALL it is what they talk about, “We finally made it to maintenance” or “We’re almost at maintenance” and so forth. Maintenance is still a host of medications most of which are given at home but monthly clinic visits versus weekly and procedures only once every 3 months instead of weekly in these early phases of treatment. People describe feeling more “normal” and I can see that already happening to us now.

Aria is back! She is feeling great and this past week has been wonderful watching her emergence from the steroid’s darkness. She has been playful and talkative. She is still weak but getting stronger each day. She wants more independence with all kinds of things she used to do and is laying claim to those things once again. Her spirit is bright and radiant. I’ve often imagined her like the rippling sparkle of the sun as it dances on water. You can see twinkling stars of the sun’s reflection jump with the movements of the water. This is exactly like Aria’s spirit. She dances. She twinkles. She glistens and glows. She is magnificent.
Aria’s clinic visit this past Friday February 29, 2008 was awesome! The clinic itself was quiet almost too quiet. There was an office just off the main waiting area that was dark since the woman occupying that space was off for the day. It was rather unsettling, sort of like being in the office on the weekend when no one is around. There were only a few families in the waiting area and for a long time, it felt like we had the entire place to ourselves. It was wonderful. There were 2 families there that we had met before. Both of the children being treated have ALL and both were nearing their maintenance phase of treatment. The obvious relief on their mothers’ faces and in what the mothers had to say was powerful. I kept thinking that the phase we’re in now and the one that follows represent the calm before the storm. Delayed Intensification is by far the worst phase of treatment and getting to the end of that is a major milestone. Both of the mothers I met looked worn down and a little rough around the edges, however there was calmness in their voices as well as gratitude and tremendous relief. Their children looked fantastic and were incredibly playful. It was wonderful energy to be around.

I noticed that I was full of very mixed emotions. On one hand, I was feeling very confident and comfortable. I was thrilled that Aria was feeling better and know that these next few weeks will see her feeling the best she has felt in a long, long time. I was filled with hope. “She’s doing so great! Her numbers are fantastic!” I kept hearing myself say. Then I would look at her cuddled in Doc’s arms, quiet, reserved, back in her cocoon and suddenly it was as if a ton of bricks fell upon my psyche delivering a whopping dose of reality. Aria is in a clearing that is light, airy and sunny but a dense dark forest awaits her. My mind and my heart spent the day savoring the meadow-like clearing and at the same time my mind and my heart would race to the forest’s edge and stare. It was incredible to observe my body when I was in those moments. I noticed that I was hunched a little as if I was peering into what I couldn’t see clearly, stretching my body in ways that would enable me to get a better look. It was dark and unclear. I would run back to the meadow, to the present and try to enjoy myself but the forest in the background was daunting, oppressive and ever present. I wasn’t able to fully enjoy the meadow and all of its wonders. I did finally stop racing back and forth but I never stopped looking over my shoulder at what is waiting for us. I had to finally tell myself, “We are not out of the woods but we are here in the light to gather strength.” I felt comforted by that.

I am completely certain that some of this energy was due to a conversation I had with another mother whose son is very sick. They have been dealing with his cancer for several years after an original prognosis that was even better than Aria’s. Now they find themselves being encouraged to “let him go.” “How does one do that?” I asked her. She shrugged and told me that they aren’t ready yet and that there is still an experimental chemotherapy that they are trying now. I understand her need to try everything possible to save her child. I know her doctors are being gentle with her trying to nudge her to face a horrifically inevitable outcome. But I also recognize her need to know that they did everything possible to save him. It was a powerful reminder that once again there are no guarantees, no promises. I know this is true for us all. Life can be taken from us at any moment for any reason but there is something very different when you face death as a known threat. As an adult I can make a decision to stop treatment when I’ve had enough but as the mother of a child going through treatment, I cannot imagine for the life of me stopping until every possible avenue for cure has been explored. I suspect this is the energy I was sensing from this woman. My heart ached so deeply for her and for me. The threat of death is there for us all but for this woman it is solidifying. For me, it remains a vaporous presence that for now seems a little less oppressive but is nevertheless still there.

Aria’s lab work was wonderful. Her blood was a nice red color! Her hematocrit remains steady; still super anemic but not in need of a blood transfusion. Her white blood cell counts are normal as are her platelets. Her ANC level was over 7000, which is the highest it has ever been, which tells us that she has all kinds of infection fighting power. Her cholesterol level is WAY down too, not so much that we can stop her medication but we are going from twice a day to once a day. Small smart healthy steps toward healing! Her overall counts (ANC) are expected to start dropping because of the chemo medication she takes at home. It is normal and should not reach the critical immuno-suppressed stage. She should stay in a healthy range for the next 10 weeks until we hit Delayed Intensification and everything will change. Her spinal tap procedure went off without a hitch. She has one more spinal tap next Friday and that will complete her procedures for this phase of treatment.

As I was in the recovery room with Aria and she was eating carrots and ranch as well as ‘red chips’ (nacho cheese flavored doritos) I was talking with Dr. Trobaugh about her numbers and her progress and so forth. My mind and heart were racing from the meadow to the woods again and I was desperate for some reassurance. I think I asked her at least twice if not more, “So, you’re happy with how well Aria is doing right?” I realize now as I write this, that the voice of my very tender and fragile psyche was making feeble attempts to say simultaneously, “Can’t you just tell me that everything is going to be ok?! Can’t you just say that this nightmare of sorts is going to end really-really-really-really soon? Can’t you? HUH? Can’t you please just tell me that?” It was a pleading voice and I as I reflect on that moment in the recovery room at Aria’s bedside, it is no accident that I was on my knees asking Dr. Trobaugh these questions with my real voice and with the silent one in my mind. Dr. Trobaugh is amazing. I have to remember to tell her that when she looks in my eyes and tells me with a smile, “ I am so happy with how well Aria is doing. She is doing GREAT!” it is so reassuring to me and fills me with just the amount of strength I need to face another week. Her honesty and her ability to sense me and know my needs are tremendous. She is one of those doctors that can truly relate to people. She can take this very complicated matter and make it make sense. It is a gift and I am so grateful for her.

I asked her about the psychology of this phase (consolidation) and interim maintenance. I told her that I felt a lot lighter and more hopeful but I was concerned that perhaps this was a honeymoon phase of sorts. I didn’t want to get my hopes up too high but at the same time I needed to know that it was still ok to feel hopeful. I was a little confused still needing more reassurance I suppose. I was thinking if I was feeling hopeful was I denying the potentially grave reality of the situation? I know it is important to remain positive and hopeful and not dwell on the negative and darkness but I kept thinking about that other mother and her son’s 90+% chance of survival from his cancer. I know that his cancer is very different than the one Aria is dealing with but I wanted Dr. Trobaugh to be able to look into some crystal ball and tell me that Aria’s future was secure. She was very good to remind me to be in this moment. “For now, Aria is doing great! You have every reason to relax a little and enjoy her feeling better. She just couldn’t be doing any better than she is right now!” I was comforted by her words although not fully settled. I suspect I’ll never be fully settled. I imagine my emotional heart and my practical mind will always be at odds given certain circumstances. This is life. For now, I am trying to keep most of me in the light of positive thinking while still keeping a steady foot in the shadows of reality.

It has been a glorious week and yet I have struggled a great deal. I’ve spent days peeling layers of myself, dissecting what’s been getting under my skin and trying to find the source of my fluctuating mood. I’ve been very introspective trying to get myself sorted, which makes me look at Aria and her need to go into her cocoon. We are very much the same in this regard. I’ve come to the conclusion that I was emotionally spent this past week. I had no reserves and no emotional stamina to exercise the patience needed to raise 3 small children, run a zoo-like farm, be a humble happy mate and friend as well as be a source of creative energy for my own spirit. It isn’t that I’m asking too much of myself, nor am I trying to be any kind of wonder- woman. I simply recognize that when I have a short fuse and I bark at my children instead of modeling respectful tones and language I know my spirit is soured and needs some tender attention. I spent the week grumbling and growling over the least little things because those little things seemed overwhelming, growing exponentially larger as the days went on. Little things like Rianna trying to climb on chairs again and again 100 times throughout the day just wore me down. Aria pouting instead of using her words to express herself made me crazy. Reo digging his heels in over not wanting to try some new kind of food was infuriating. The fact that I just wanted to vacuum a room without someone tripping over the cord or crying over some such thing, just made me want to rip my hair out! None of these things in isolation is difficult, nor are they very challenging when I am emotionally charged, but when I am not, these things become very hard and the days have a seamlessness that is exhausting in their tediousness. None of these things are anything but normal parenting/ mothering challenges and they are only slightly exacerbated by Aria’s illness in my opinion. This kind of emotional drainage happened more than once before she got sick and I’m certain will happen many more times through the course of her treatment. It is just what makes life, life, but that doesn’t make it any easier when you’re in the middle of it, dealing with it.

It is not a sustainable state of mind for me and I am committed to figuring it out as quickly as possible so that I can return to my preferred joyful state of being. Hence, the need for retreating to the cavern of my mind for some much needed quiet and care. It is very clear to me that I benefit greatly from this kind of reflection and self-analysis. Some may view it as being selfish but I view it as an exercise that better enables me to be fully and sincerely present to those who need me most. I often think about the beautiful teaching of Jesus when he said, “Love thy neighbor as thyself.” For many, many years I heard that lesson ring in my head but I realized about 10 years ago that the last part of the lesson “as thyself” was something that tended to fade into the background. What I remember learning from my Christian teachings was to somehow forget self and focus on others and yet, this is in direct contradiction to what I believe Jesus was trying to convey. It wasn’t until I found the teachings of Buddhist monks that I learned how to better apply that lesson. I was learning to consider myself first and tend to my needs with gentle respect and kindness. I learned to embrace myself with all of my wonders and misgivings. I learned that to know myself in truth made me better able to know others especially my children. This is something I constantly think about as I develop new relationships and have new demands and challenges to face.

One of the many things I’m learning through the experience of Aria’s leukemia is to understand myself with greater clarity and depth; to face those emotions of mine that are unkind when they are aroused. I think the better I understand my own triggers and when I’m maxed out emotionally, I will be better equipped to face life when it gets hard and I find myself tempted to be angry with others asking questions that have no answers. Questions like “Why me?” only begs another question in my opinion which is “Why not me?” Life is both easy and hard, good and bad, fluid and turbulent. It is the perfect balance of positive and negative. I am convinced that when life seems out of balance it is I that is on ‘tilt’ and only I can right myself. I suppose if I were really together spiritually, I could say that I pray with devotion or I meditate with serenity and calm. I’m hopelessly inept at both. I don’t pray as I was taught as a child and whenever I’ve tried to meditate in the traditional sense I either fall fast asleep or my mind wanders aimlessly. Instead, I find quiet moments in everyday life to think and consider all the things that nag at me as well as those things I find praiseworthy. It is a constant practice and right now a cherished method for mental release has been this writing.
I will end this lovely bit of meditative imagery with this; Rianna has just walked into the library with Doc’s underwear on her head. Reo is running around wearing a magician’s cape trying to save his kingdom from evil demons and Aria is coming downstairs wearing only her underwear and growling like a scary lion! Life is so good! Life is meant to be thoroughly enjoyed and we are meant to be truly, sincerely, hopelessly joyful. I am convinced of that and I fully devoted to its practice.

Tuesday, June 23, 2009

Aria's Beauty

A friend of mine recently wrote about her son finally losing his hair. She shaved it after growing weary of hair in her chapstick, drinks, food and so forth. But she mentioned being glad to have this part of the journey over with and to let go of all the baggage associated with hair loss due to chemotherapy treatment. I loved that word, “Baggage” to describe the emotional build-up around this particular aspect of the journey. I cannot emphasize enough the enormity of it. It makes everything so real and let me tell you, it is no small piece of luggage to drag around. It is most definitely a part of it and it has to be accepted on some level but getting to that acceptance, for me, took a little time and a lot of thought. I had some serious attachments to Aria’s hair and to my own and letting that go was no small feat.

This email is a wonderful description of how I opened up my baggage and went through it until I was done and could close it and put it away for good.

Subject: Aria’s beauty
Date: February 24, 2008

This is a difficult email to write because it represents my superficial side, which is something I find less than noble. I can be quite shallow in how I see the world and it isn’t anything I am particularly proud of but it is a part me and a reality that has recently hit me in the face.

One of the most blatant examples of my superficiality dwells in the cliché, “Never judge a book by its cover.” I think this statement is the biggest pile of hog wash there is! I am positively and completely drawn to book covers! The book cover is the first glimpse I have of what lies within the pages. If it is a tasty view to my eye, I am definitely more inclined to pick it up and look it over, versus something gory or sappy sweet or even generic. This is the case when I’m left to my own devices. When other people recommend books, however, I rarely notice the book cover and simply read the book because of the recommendation. It is exactly the same way with wine! If a wine bottle has a fun label, I’m likely to give it a try. If someone recommends the wine, I drink it without really noticing the label other than to remember it if I really like it. How fickle is this? I don’t know if everyone behaves this way but I’m certain that my vanity runs deep and I’m not happy about it.

My issues with vanity and superficial looks came to a head last week after posting pictures of Aria as she looks now. So many people commented about how beautiful she is and despite the fact that I know that INTELLECTUALLY, I was struggling with feeling that EMOTIONALLY. Once again, the conflict between what I know in my mind versus what I feel in my heart was raging. What’s really horrible about all this is that Aria is my precious daughter and I couldn’t feel that she was beautiful when I looked at her and this reality threw me into my own personal pit of sorrow. What an awful thing for a mother to feel! I was grieving so deeply about how Aria’s physical appearance had changed and even though I know, intellectually, that her present appearance is temporary it has been hard to watch the transition. I found myself saying, “Isn’t she so beautiful?” as if I was trying to convince myself. All the while, I was looking at her pictures and feeling so sad. She looks so different and it is sad. Last week countless people told me how beautiful she is and I’m convinced that people were able to see beyond the physical changes and I was so grateful for that. However, it did nothing for my sense of shame for what I could not see and feel myself. Still, I took people at their word and it was helpful. I was even more grateful, however, to Aria’s preschool teacher who one day last week poked her head into the car to say ‘hi’ to Aria after we had picked up Reo. Aria was thrilled to see her and had smiled only a half smile but she was obviously so happy. They chatted for a few minutes and then Mrs. Young came out of the car, looked me in the eye and burst into tears! She said, “Oh My God! She’s not even the same little girl anymore! She looks so different!” I hugged her and was incapable of expressing my gratitude for her honesty. It was as if she had released some pressure in me that I had been toting for days. She collected herself quickly and then said, “Oh, Julia, I am so, so, sorry! That must have sounded so horrible! I only meant......” I cut her off and thanked her! I told her how much her honestly meant to me! I felt validated in some ways. I needed someone else to say what I had been thinking and know that it didn’t matter but at the same time know that it was hard and sad. In that moment, I was relieved. Yet, I knew I needed to work on it. I knew I needed to change my attitude and pronto! This was not making me happy and I firmly believe that we are here to be happy and enjoy life no matter what. However, happiness takes work sometimes and boy did I have my work cut out for me on this one. Not only did I need to work on regaining my happiness but I also had to work on my issues of vanity and what a ugly can of worms that is! I found myself listening in on a conversation my mind and my heart were having. This is what they said:
“So, Aria’s beauty is only how she looks?” my mind asks me.
“Well, it’s the first thing I see.” I reply with my pitiful heart.
“Well, let’s begin there. What do you see when you look at Aria now?” my mind asks me.

I paused thoughtfully and said, “When I look at Aria now, my mind tells me that she is strong, even though she has been so incredibly weak. She is smart and funny, even though she is just beginning to smile and laugh after a month long hiatus from both. She is beautiful even though she is bloated with dry lips and skin and thinning hair. She is magical even though she has been keeping her magic to herself. When I look at Aria now, my heart screams, “Just look at her! She is so sick! She is so Sick! She is so SIck! She is so SICk! She is so SICK!!!!”

My mind calmly tells me, “Yes, Aria is so sick but you forget. Aria is on the path toward healing.”
“I know! I K-N-O-W!” my heart responds with an extra beat to roll my eyes in disgust.
“What is Aria’s beauty? Where is Aria’s beauty?” my mind asks firmly but gently. (always gentle is my mind)
“Aria’s beauty is her spirit and there it dwells.” my heart says feeling a little more peaceful.
“Seek her spirit and you find her beauty. Look not with your eyes. Find a way to sense her.” my mind told me.

I found myself saying, “you’ll know when you know” which is something I say all the time. I didn’t give it another thought. A few days later Aria showed me that her feet were dry and she wanted me to rub lotion on them. I was thrilled to be able to do this for her. It was just the 2 of us and I had been craving some real intimate time with her, especially since I had been feeling like such a piece of shit about the whole beauty thing. I was a mess! So there we were in the upstairs bathroom. Aria was sitting on the toilet and I was sitting on the floor on the purple bath mat with my legs and feet sort of around the toilet base. I looked up at her while she stared down at her feet and gently played with her ear. Suddenly I was completely overwhelmed with the most peaceful feeling. I took a deep breath and I closed my eyes. “Sense her beauty....” I heard myself say. I started to rub her feet and the strangest images popped into my mind. The first one I sort of shook off because it was so weird but it just wouldn’t go away. I imagined picking buttercup flowers and holding them under her chin “to see if you like butter or not!” I rubbed her feet some more and gently let the palm of my hand graze her toes and I imagined in my mind’s eye gently gliding my hand over purple clover flowers. They were the perfect images. They were soft, colorful, beautiful, innocent, young, fresh and real. All the things that best describe Aria’s spirit and make her so uniquely beautiful. I looked up at her and she was still staring at her feet and me rubbing them. I smiled at her and caught her eye. She barked, “Stop it, Mom!” and I burst out laughing. Oh, she was so beautiful in that moment and I was able to see, finally see, beyond the cover of her changes and the label of beauty.

I’m afraid that I’m still hopelessly superficial when it comes to books and wine,
but in terms of my daughter, I see what you see and I am happy again.