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
Tuesday, June 30, 2009
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!
~j
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!
~j
Expectations
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.
~j
Monday, June 29, 2009
Joy
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.
~j
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.
~j
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.
~j
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.
~j
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.
~j
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
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.
~j
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
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