March 14, 2009 (pm)
Subject: Aria
Aria remains in the hospital. She's not well at the moment. Her fever never broke and spiked to 102.3. One time when she was getting some tylenol, I think the nurse pushed the medicine too rapidly and this caused Aria to gag and then vomit the entire contents of her stomach. Needless to say, she didn't have much of an appetite for the remainder of the day. I'm so thankful she's on IV fluids because she just doesn’t want to drink anything either. Her temperature was slowly coming back down all afternoon but when I left an hour ago she was burning up. She is no longer full of life and spirit, although it's in there. She's tuckered out.
So am I. I don't have it in me to write much more about this day, although there is plenty to say. I have to admit that maintaining this veneer of bravado, albeit genuine and sincere, is exhausting. We are fine but we're not. Aria is in the right place but she's in the hospital. I want her to stay and get better and I want her to come home immediately. I know she will improve in a matter of a few days and this enables me to smile, to joke, to hope, to laugh and yet I also want to cry. I want to sit and sob for not only Aria but for the several kids and families I saw today...for the thousands of kids and families...for suffering in general....for having to face Mystery with what sometimes seems like nothing more than concepts of hope, courage, fight, strength and the like that leave me dangling from a silken thread at the mercy of a whimsical breeze. I must be steady in 'unsteady' and so I am. ~j
March 15, 2009
Subject: Aria day 2
Aria's fever spiked again last night around 8pm to 102+. By 4am this morning, Doc said it was normal. When he called me at 7am, they didn't know what her ANC was so he said that he'd call in a little while to let me know. He called about 30 minutes later and apparently the doctor on call didn't order 4 am labs, which is something they've ALWAYS done. So, they were getting ready to draw her labs then and as of 9am, Doc hasn't called me with the results. Aria was in great spirits when I talked her. Reo and Rianna talked to her too, which was a first and was too adorable for words!
As it stands, the earliest we'd be able to leave would be around 8pm tonight. This is highly doubtful so we're planning on another day and will just see how it rolls. I'm aware that the tone of this email is newsy and different than my normal story-telling prose. I have thoughts swirling in a disconnected kind of way. My tendency is to allow my thoughts to percolate a while when suddenly they're ready to flow and I can sit and write with little effort. That isn't where my head is now. So I'm just going to give you news clips until I can weave this bit of the journey into a more telling tale. Mind you, I selfishly do that for myself and you are simply the innocent bystander and recipient of those thoughts!
As soon as I know more, you'll know more too! ~j
March 15, 2009
Subject: Aria part 3
I'm home now after a much shorter time in the hospital. Aria needed some peace and quiet so she could rest.
Aria isn't well. This isn't to say that she isn't doing well. She's doing everything she can. She had moments today that were playful and cheerful but most of her moments were pale, sullen, weepy and sick.
Aria's temperature today got as high as 104.6 around 2 30 this afternoon. (it dropped to 101.6 by about 5pm)Blood cultures were immediately drawn. Tylenol was immediately put on board and the doctor came by 'to chat.' I was reassured that this is par for the course when dealing with a virus. We simply have to let the body do its thing. Aria's ANC did in fact drop to 240 today, as we suspected it would. It is likely that it will continue to drop but we don't know that for certain. She may hold steady. We simply don't know.
It was another day filled with restless unknowns and uncomfortable certainties. It was day filled with little laughter but plenty of relief being together.
I'm not as tired as I was yesterday but I'm scattered. Restless is a good word. I caught myself being more rigid with Reo and Rianna trying to control them, to keep them quiet and still. It was a meager attempt to control the situation. I'm home early so they can have more freedom to play, be loud, be joyful and be kids. I'm home early so Aria can sleep, heal, and restore. Doc is with Aria and they are planning a quiet, quiet evening.
My mind is racing and I have this urge to pace and at the same time I'm a little numb not quite knowing what to do with myself. It is a peculiar feeling. Part of me wants to be able to shrug and take it all in stride. I've convinced myself somewhere that this is what it means to be brave and courageous. Another part of me wants to slap me in the face and shake me senseless all the while screaming in an oddly calm voice, "This is my daughter who is only 5 years old. She has leukemia and despite that she's done well and we've had 3 months to really enjoy her wellness, the severity of her disease strikes with a fury." It is a brutal reminder that leaves me breathlessly haunted. This is one of those times, those moments when living in it, through it, present in and to it is just about the last thing I want to do. So, I'll resort to simplicity; pbj sandwiches, apple slices and milk. Story time in a little while and then bed time. I'll count my blessings even though that exercise is sometimes stupid and absurd. I'll do it anyway and be present to it. I'll call Aria and I'll tell her again how much I love her and then I'll say goodnight to this day. ~j
March 15, 2009 (pm)
Subject: Aria is an oven
So Doc just called and Aria's temperature is back up to 103.3. But here's the strange part. I could hear her singing in the background so before he told me the news of her temperature, I said with a big smile on my face, "Well, sounds like someone is feeling better!" Doc quickly and soberly replied, "Yeah, well no. Her temperature was 103.3 but she just woke up from a great nap."
Aria needed to rest and she did. It was so healing for her. This makes me so happy.
Aria got on the phone. "Hey honey, how are ya?" I said.
She replied in song, "I'm a little cooking oven. I'm an oven. Oh I say! I'm a little cookin' oven!"
I giggled and thought, "Am I laughing or crying right now?"
Aria then said, "Hey, Mama, when you get here you're gonna see some silly business!"
I have no idea what she is talking about and she doesn't elaborate.
I simply say, "Oh Yeah! Well, there better not be any fun going on while I'm gone!"
Aria giggled and then said with a more serious tone, "I love you Mama, good night."
"I love you too sweetheart!" I told her.
Doc got back on the line and he and I both sighed....What is there to say? What is there to do but to simply be. ~j
March 16, 2009
Subject: we’re ALL home!!
We all got home today around 4pm. I know. It is as crazy as you think it is. I told one of my Goddesses today, "you know this is such a ride. I hate amusement parks and this is not amusing!" 104+ yesterday to home today! Wow!! We feel very lucky and guarded at the same time. Aria's temperature was a steady 99.3 all day long. Her cultures were negative and her ANC was 496 this morning. She was eating, drinking and peeing so things were definitely looking terrific. Dr. Trobaugh said that since we're scheduled to come to clinic tomorrow anyway for her monthly exam and chemotherapy, we could go home today and come back first thing in the morning. We jumped at it! Part of me hesitated. I won't kid you. I kept thinking, "Geez, we have to come back tomorrow anyway, why not just give her one more 'safe' night and chemo tomorrow here where it is 'safe' and I won't have to feel like I keep coming and going." Clearly, I was settling into the hospital experience, which is always such a peculiar mix of emotion. I was also thinking, "Doc could really use a night in our own bed! We could all use a night at home. Even if it is just one night, the healing and restorative powers of home are enormous." When Dr. Trobaugh's nurse, Mary came around and ask if we wanted to head home I told her, "We're outta here!"
So Aria was given a high potency broad spectrum 24 hour antibiotic (ceftriaxone) and we were given instruction that if she spikes a fever and nothing else that we could go ahead and give her tylenol, which is something we are never allowed to do. But with the antibiotic on board, she'll be covered so we can treat the fever. However, if she gets shaking chills or vomits or simply doesn't look well, then we need to call and bring her back.
So far so good! She's had a bath, some pizza and an icecream sandwich. I suspect it will be an early bed-time for her. Our appointment is 10 30 tomorrow morning. I'm worried about the effect of her chemo tomorrow. More than likely it will make her counts go down, but I was reassured that it shouldn't be too bad. You know what? It really doesn't matter. I can't control what happens. I simply have to be present to it no matter how it plays out. I will.
Doc and I were marveling over the fact that we were only in the hospital for 2 nights but it feels much, much longer. It is as emotionally draining as you imagine it to be. It is strange to be so frightened, concerned and raw after having spent just 3 days, knowing full well that several families around us had been there for several weeks. I don't know how to rationalize that. I find myself groping for understanding and it doesn't come. Once again I find myself sitting in the comfort of, "it just is." ~j
Wednesday, January 13, 2010
Aria's March 2009 ER visit and admit
March 14, 2009
Subject: Aria is off to the ER!
Aria's temperature was 101.8! Yikes. She and Doc left a few minutes ago and they'll call me within the hour to see if she needs to be admitted, which I'm pretty sure she will be. DRATS!
Here's what happened: It all started last week when Rianna had a green runny nose. She never ran a temperature and her runny nose lasted a few days. No one else got sick until earlier this week when I came down with a wicked sore throat and runny nose. I didn't run a temperature though. By Tuesday my sore throat was better and by Wednesday it was virtually gone. Everyone was feeling good. Friday morning Aria mentioned having a few sniffles but she clearly felt well and was not running a temperature. She wanted to finish the week at school so I sent her without giving it a second thought. All day long yesterday and well into the evening she was fine. By bed-time she had a runny nose but that was it!
Aria has taken to climbing into bed with us in the middle of the night. It was around 3 30ish when her hand touched mine and it was piping hot. I woke up immediately and started feeling her. Her cheeks didn't feel super warm but her hands, feet, back and belly did. She had not been under the covers. I got up to get the thermometer just to check and as I was coming back into the room I heard Doc whisper to her, "Honey, do you feel hot?" Aria said sleepily, "Uh-huh." I turned on the light, took her temperature and VOILA 101.8!
A year ago April was our first run to the ER and let me tell you the difference then to now is just so amazing. I was completely calm and was even able to joke with the inpatient intake coordinator on the pediatric oncology wing. My heart wasn't pounding, my ears weren't ringing and I wasn't absolutely sick to my stomach. This is so familiar to us now. It feels safe somehow. It is still wretched and there is definitely an element of fear but it's different. Aria was 'bee-bopping' all over the place as we were getting her ready to leave. I'm serious. You would never in a million years guess that she was more than likely about to be admitted. As she walked out the door she rattled off what she wants me to bring her from McDonalds, "Hey, Mama, I want a cheeseburger, french fries, a coke and if they have a pony toy that would be great but it doesn't really matter what kind of toy they have!" I gave her a big hug and a sloppy kiss, which made her groan and giggle and off she went.
I stood in the open doorway watching her with her hand in Doc's as they walked to his car. I noticed a hazey moon through a misty veil of clouds. The air was crisp and refreshing reminding me that winter has not relinquished its grasp. The last thing I heard Aria say in a goofy playful way, Aria's way, was, "OOOOOOOH I hate spooky ghosts!"
I came into our library and began to write this. Almost immediately I was reminded of the image of death that swirled around our front door for a long time filling me with both a menacing fear and confidence to do what I must. That swirling grey smokey image hasn't been in my thoughts for quite some time and as I hear Aria's voice resonate in my mind all I can think of saying is, "TAKE THAT death. You're not welcome here!"
Aria is a powerhouse, but keep her close for us would you please? ~j
March 14, 2009
Subject: Aria was admitted
It's good news and bad news.
The bad news is that she has to be admitted!
The good news is that her ANC was 532, which is WAY higher than I thought it would be. Anything greater than 500 means you don't necessarily have to be admitted. But anything below 500 is a definite admit. She's teetering on the edge and she had her methotrexate chemo last night, which may drop her ANC even more, so they want her admitted to make sure. Her fever was still 101.8 upon arrival but after some tylenol dropped to 99.0. Her chest x-ray looked good as did a nasal swab they did. They'll be watching cultures for the next day or 2. My hunch is this will be a few day stay. On the best side of things we'll out be tomorrow but more than likely a few days. When Doc called a little while ago, they were waiting to be transported to a room and Aria was sound asleep. She'd already eaten several red popsicles and was pretty happy about that. She started to complain that she felt achey and I suspect was getting pretty tired. We're giving her some time to rest before we head in. We're planning to be there around 9am with plenty of movies in tow!
Keep us close and in the light!
much love, ~j
Subject: Aria is off to the ER!
Aria's temperature was 101.8! Yikes. She and Doc left a few minutes ago and they'll call me within the hour to see if she needs to be admitted, which I'm pretty sure she will be. DRATS!
Here's what happened: It all started last week when Rianna had a green runny nose. She never ran a temperature and her runny nose lasted a few days. No one else got sick until earlier this week when I came down with a wicked sore throat and runny nose. I didn't run a temperature though. By Tuesday my sore throat was better and by Wednesday it was virtually gone. Everyone was feeling good. Friday morning Aria mentioned having a few sniffles but she clearly felt well and was not running a temperature. She wanted to finish the week at school so I sent her without giving it a second thought. All day long yesterday and well into the evening she was fine. By bed-time she had a runny nose but that was it!
Aria has taken to climbing into bed with us in the middle of the night. It was around 3 30ish when her hand touched mine and it was piping hot. I woke up immediately and started feeling her. Her cheeks didn't feel super warm but her hands, feet, back and belly did. She had not been under the covers. I got up to get the thermometer just to check and as I was coming back into the room I heard Doc whisper to her, "Honey, do you feel hot?" Aria said sleepily, "Uh-huh." I turned on the light, took her temperature and VOILA 101.8!
A year ago April was our first run to the ER and let me tell you the difference then to now is just so amazing. I was completely calm and was even able to joke with the inpatient intake coordinator on the pediatric oncology wing. My heart wasn't pounding, my ears weren't ringing and I wasn't absolutely sick to my stomach. This is so familiar to us now. It feels safe somehow. It is still wretched and there is definitely an element of fear but it's different. Aria was 'bee-bopping' all over the place as we were getting her ready to leave. I'm serious. You would never in a million years guess that she was more than likely about to be admitted. As she walked out the door she rattled off what she wants me to bring her from McDonalds, "Hey, Mama, I want a cheeseburger, french fries, a coke and if they have a pony toy that would be great but it doesn't really matter what kind of toy they have!" I gave her a big hug and a sloppy kiss, which made her groan and giggle and off she went.
I stood in the open doorway watching her with her hand in Doc's as they walked to his car. I noticed a hazey moon through a misty veil of clouds. The air was crisp and refreshing reminding me that winter has not relinquished its grasp. The last thing I heard Aria say in a goofy playful way, Aria's way, was, "OOOOOOOH I hate spooky ghosts!"
I came into our library and began to write this. Almost immediately I was reminded of the image of death that swirled around our front door for a long time filling me with both a menacing fear and confidence to do what I must. That swirling grey smokey image hasn't been in my thoughts for quite some time and as I hear Aria's voice resonate in my mind all I can think of saying is, "TAKE THAT death. You're not welcome here!"
Aria is a powerhouse, but keep her close for us would you please? ~j
March 14, 2009
Subject: Aria was admitted
It's good news and bad news.
The bad news is that she has to be admitted!
The good news is that her ANC was 532, which is WAY higher than I thought it would be. Anything greater than 500 means you don't necessarily have to be admitted. But anything below 500 is a definite admit. She's teetering on the edge and she had her methotrexate chemo last night, which may drop her ANC even more, so they want her admitted to make sure. Her fever was still 101.8 upon arrival but after some tylenol dropped to 99.0. Her chest x-ray looked good as did a nasal swab they did. They'll be watching cultures for the next day or 2. My hunch is this will be a few day stay. On the best side of things we'll out be tomorrow but more than likely a few days. When Doc called a little while ago, they were waiting to be transported to a room and Aria was sound asleep. She'd already eaten several red popsicles and was pretty happy about that. She started to complain that she felt achey and I suspect was getting pretty tired. We're giving her some time to rest before we head in. We're planning to be there around 9am with plenty of movies in tow!
Keep us close and in the light!
much love, ~j
Reo's Award
March 5, 2009
Subject: Reo’s Award
A few hours ago, I received a phone call from the Chase Youth Commission letting me know that Reo is going to be awarded with the Chase Youth Award for Courage! He'll be receiving a letter in the next few days letting him know that he's been nominated but I've been asked to keep it hush-hush that he's actually won. They want that to be a total surprise at the award ceremony in 2 weeks. I've been encouraged to build up the suspense and so forth. I'm also going to be talking to him about why I nominated him and what the award actually means. The Mayor of Spokane will be presenting him with the award and he'll receive a letter from our governor as well so I'll be talking to him about all of those things too. Pretty big deal stuff for my little guy!
I'm busting with pride as you can well imagine but more than that I'm incredibly tearful. I was telling my Goddesses that the concept of 'shadow survivor' has haunted me from the moment I read it and I want to make sure, as much as I possibly can, that what's happened to Aria leaves as minimal a mark on Reo as possible. I also wanted to generate an opportunity to explain to those on the outside of pediatric cancer that siblings are in great need of attention too and that the importance of healing can not only be measured in lab results and medical procedures. The healing we gain from each other is powerful and often beyond the realm of understanding and reason. This is what Reo has done....
I've included a copy of his nomination letter in case you didn't get a chance to read it the first time! Hip-hip-hooray for Reo!! ~j
It is a great honor for me to sit and write about my son, Reo D. Layton who is 7years old and a first grader at Medical Lake Elementary School. Reo is an average little boy. He is neither a gifted student nor athlete. He has not rallied his peers for some community cause nor has he faced personal hardship that he’s found creative ways of overcoming. Reo spends his days like any other egocentric kid. Yet, he is extraordinary.
In January 2008, Reo’s little sister, Aria, was diagnosed with leukemia. Suddenly our family was thrown into a world filled with desperation, fear, crisis, anxiety and unknowns. Reo and Aria were very close playmates and overnight he saw her completely change. She spent days lying in a hospital bed with IV cords. She screamed in pain, begging for help, terrified much of the time. Reo did not comfort her outwardly. He didn’t stroke her hair or rub her back. But he did ride on her bed every time she needed an x-ray or when she was returning from surgery. He did tell her again and again, “It’s going to be ok Aria.” She believed him and so did I. He did pick out movies for her to watch and together they watched more television than I care to think about. He did entertain their baby sister, finding toys for her and ways to keep her occupied when we were quarantined to our room.
When Aria was released from the hospital and we began our life of outpatient treatments, Reo never missed an appointment, wanting only to be with Aria. In those first few months, our clinic appointments would last several hours, and although the waiting area and playrooms are exceptionally fun and kid friendly, Reo often sat on the sidelines and waited with patience, the likes of which I have never seen in a young child. He quietly watched and took everything in. I can’t remember a time that he complained or whined about wanting to leave and trust me, he had every reason to complain. He heard “just-a-minute” or “wait your turn” or “hang on” countless times. We learned that siblings of children with cancer are often called “Shadow Survivors”. This is a heart-wrenching reality and every parent I know does their best to make certain their other children aren’t left on the back burner. I remember feeling haunted by the idea of ‘shadow survivor’ and knew that if Reo had a role to play, the inclusion he felt would be immensely empowering in a very powerless situation. Reo became instrumental in helping us all celebrate the simple little mundane things of every day life. Suddenly eating a meal together was worthy of attention. Reading books, watching movies, telling stories, acting out movie characters, reviewing his school work, and helping with household chores became peaceful highlights in exceedingly stressful times.
It took over 10 months before Aria regained her strength, stamina and real desire for play that she once had. Reo stayed by her side and remained a silent presence that gave her healing comfort that I will never fully understand. Aria has had to go to the ER a number of times this past year and Reo has been with her all but once and that experience was revealing. His first grade teacher called to tell me that he was not himself and was worrying himself sick that “Aria is at the hospital. She’s ok but I’m not there with her.” We picked him up early from school that day and the brightness he brought into her room was blinding. The brilliance of their smiles and the relief they felt being together was breathtaking to witness. I don’t know that we can quantify the power of this kind of healing.
Reo is an exceptional young person worthy of a Chase Youth Award. He reminds us that sometimes the greatness of a person is the gift of their presence in relishing the ordinary things of life despite extraordinary circumstances.
Sincerely, Julia M. Hayes
Subject: Reo’s Award
A few hours ago, I received a phone call from the Chase Youth Commission letting me know that Reo is going to be awarded with the Chase Youth Award for Courage! He'll be receiving a letter in the next few days letting him know that he's been nominated but I've been asked to keep it hush-hush that he's actually won. They want that to be a total surprise at the award ceremony in 2 weeks. I've been encouraged to build up the suspense and so forth. I'm also going to be talking to him about why I nominated him and what the award actually means. The Mayor of Spokane will be presenting him with the award and he'll receive a letter from our governor as well so I'll be talking to him about all of those things too. Pretty big deal stuff for my little guy!
I'm busting with pride as you can well imagine but more than that I'm incredibly tearful. I was telling my Goddesses that the concept of 'shadow survivor' has haunted me from the moment I read it and I want to make sure, as much as I possibly can, that what's happened to Aria leaves as minimal a mark on Reo as possible. I also wanted to generate an opportunity to explain to those on the outside of pediatric cancer that siblings are in great need of attention too and that the importance of healing can not only be measured in lab results and medical procedures. The healing we gain from each other is powerful and often beyond the realm of understanding and reason. This is what Reo has done....
I've included a copy of his nomination letter in case you didn't get a chance to read it the first time! Hip-hip-hooray for Reo!! ~j
It is a great honor for me to sit and write about my son, Reo D. Layton who is 7years old and a first grader at Medical Lake Elementary School. Reo is an average little boy. He is neither a gifted student nor athlete. He has not rallied his peers for some community cause nor has he faced personal hardship that he’s found creative ways of overcoming. Reo spends his days like any other egocentric kid. Yet, he is extraordinary.
In January 2008, Reo’s little sister, Aria, was diagnosed with leukemia. Suddenly our family was thrown into a world filled with desperation, fear, crisis, anxiety and unknowns. Reo and Aria were very close playmates and overnight he saw her completely change. She spent days lying in a hospital bed with IV cords. She screamed in pain, begging for help, terrified much of the time. Reo did not comfort her outwardly. He didn’t stroke her hair or rub her back. But he did ride on her bed every time she needed an x-ray or when she was returning from surgery. He did tell her again and again, “It’s going to be ok Aria.” She believed him and so did I. He did pick out movies for her to watch and together they watched more television than I care to think about. He did entertain their baby sister, finding toys for her and ways to keep her occupied when we were quarantined to our room.
When Aria was released from the hospital and we began our life of outpatient treatments, Reo never missed an appointment, wanting only to be with Aria. In those first few months, our clinic appointments would last several hours, and although the waiting area and playrooms are exceptionally fun and kid friendly, Reo often sat on the sidelines and waited with patience, the likes of which I have never seen in a young child. He quietly watched and took everything in. I can’t remember a time that he complained or whined about wanting to leave and trust me, he had every reason to complain. He heard “just-a-minute” or “wait your turn” or “hang on” countless times. We learned that siblings of children with cancer are often called “Shadow Survivors”. This is a heart-wrenching reality and every parent I know does their best to make certain their other children aren’t left on the back burner. I remember feeling haunted by the idea of ‘shadow survivor’ and knew that if Reo had a role to play, the inclusion he felt would be immensely empowering in a very powerless situation. Reo became instrumental in helping us all celebrate the simple little mundane things of every day life. Suddenly eating a meal together was worthy of attention. Reading books, watching movies, telling stories, acting out movie characters, reviewing his school work, and helping with household chores became peaceful highlights in exceedingly stressful times.
It took over 10 months before Aria regained her strength, stamina and real desire for play that she once had. Reo stayed by her side and remained a silent presence that gave her healing comfort that I will never fully understand. Aria has had to go to the ER a number of times this past year and Reo has been with her all but once and that experience was revealing. His first grade teacher called to tell me that he was not himself and was worrying himself sick that “Aria is at the hospital. She’s ok but I’m not there with her.” We picked him up early from school that day and the brightness he brought into her room was blinding. The brilliance of their smiles and the relief they felt being together was breathtaking to witness. I don’t know that we can quantify the power of this kind of healing.
Reo is an exceptional young person worthy of a Chase Youth Award. He reminds us that sometimes the greatness of a person is the gift of their presence in relishing the ordinary things of life despite extraordinary circumstances.
Sincerely, Julia M. Hayes
March 3, 2009 Aria, it's all good
March 3, 2009
Subject: Aria: It’s all good
Aria had a lab check today. We simply wanted to know what her counts were in order to determine whether we dial up or down her medication or keep things as they are. I have a suspicion that this will be our course for the remaining year or so of her treatment. I've probably eluded to this and to you it is more than likely already obvious but it's funny, I'm just now accepting it. It's as if I'm finally able to wrap my head around this being our reality. However, trust me when I say going into clinic once a month for a lab check and once a month for chemo is FINE with me!
Clinic was actually fun today. This is a real first. There were 3 families I was delighted to see, all of who have children with ALL. 2 of the 3 families are well into maintenance treatment like Aria. One little girl will be done with her treatment sometime around October. Life for them seems very normal now. That is, she is going to school full time. If you were to look at her you would never know what she has been through and continues to go through. There is nothing about her that even whispers, "cancer". I haven't seen her in a long time. It has been so long that her mom had another baby just a few weeks ago and he was sleeping peacefully in the playroom. I looked at them as epitomizing life restored and full of hope and promise. The mother and I spoke at length about those early months and how grueling and emotionally difficult they are. We spoke of a few children we both knew who had died this past year. We exchanged sobering glances and both acknowledged how blessed and lucky we feel.
Another one of the little girls, who just turned 3 and is finally in maintenance, is beginning to emerge from the level of treatment that made her appear so ill. I know that appearance very well and it is a bitter reminder that I learned to swallow every day while trying to find some inherent sweetness. This little girl looks and feels marvelous. Her mother told me with absolute radiance that they are doing well. Her smile was enormous and although our exchange was brief, I could feel her relief and her joy. It was wonderful.
The third family we encountered is a family I have written about a few times. Their daughter is also nearly 3 and they are still rather new to the process. In fact, they are in the middle of the hardest part. Her mother told me that her daughter's ANC had tanked and that they were planning on being admitted. How I remember those days like it was yesterday. Life is completely on hold virtually every single moment of every single day is suspended. It is almost impossible to imagine that there's an end-- that there's some real goodness waiting-- that there's true healing out there. What makes it even more peculiar is that her daughter looked fabulous! She was playful and sunny. There was no outward hint whatsoever that she would need to be admitted. This kind of disconnect is something I wrestled with constantly. I don't think I've got it nailed down yet. This mother is someone I like immensely. I brought her extra copies of MaryJanesFarm magazine, for which she was so grateful. I just wanted to give her a beautiful and gentle reminder that there is a lighter aspect to this process. They aren't there yet, but they will be. I reminded her that come Autumn, we'll be talking yarn and cider. She gave a hearty sigh and I'm certain didn't fully believe me but enjoyed the dose of hope nevertheless. I also gave her a very frilly lacey hankie and told her, "Sometimes you just gotta cry into something pretty!" She burst out laughing and we exchanged knowing.
Aria's ANC was 2170 today. Her hematocrit was 33.5! She's just doing GREAT. Her ANC is too high but I was reassured that it wasn't anything to worry about. We aren't going to up her medication yet. We'll give her another 2 weeks and if her ANC is the same, we'll dial her up and if it comes down then we'll leave it. This is the game. This is where we're at and I have to tell you, it is good, good, good!
The snow is melting. The sun is shining. The first flowers, snowdrops, have bloomed. Spring is Life's representative that rebirth is not only possible but visible and tangible. I see the hope that partners itself so intimately with Spring's design. I can almost taste it and I can certainly smell it and hear it. As we turn closer to the sun with lengthening days and rays uninhibited by cloudy formations, I feel so much lighter riding on the promise of this gift that was only a few months ago completely entombed and beyond reach. I face once again the light and beauty of hope and the promise of yet another day. ~j
Subject: Aria: It’s all good
Aria had a lab check today. We simply wanted to know what her counts were in order to determine whether we dial up or down her medication or keep things as they are. I have a suspicion that this will be our course for the remaining year or so of her treatment. I've probably eluded to this and to you it is more than likely already obvious but it's funny, I'm just now accepting it. It's as if I'm finally able to wrap my head around this being our reality. However, trust me when I say going into clinic once a month for a lab check and once a month for chemo is FINE with me!
Clinic was actually fun today. This is a real first. There were 3 families I was delighted to see, all of who have children with ALL. 2 of the 3 families are well into maintenance treatment like Aria. One little girl will be done with her treatment sometime around October. Life for them seems very normal now. That is, she is going to school full time. If you were to look at her you would never know what she has been through and continues to go through. There is nothing about her that even whispers, "cancer". I haven't seen her in a long time. It has been so long that her mom had another baby just a few weeks ago and he was sleeping peacefully in the playroom. I looked at them as epitomizing life restored and full of hope and promise. The mother and I spoke at length about those early months and how grueling and emotionally difficult they are. We spoke of a few children we both knew who had died this past year. We exchanged sobering glances and both acknowledged how blessed and lucky we feel.
Another one of the little girls, who just turned 3 and is finally in maintenance, is beginning to emerge from the level of treatment that made her appear so ill. I know that appearance very well and it is a bitter reminder that I learned to swallow every day while trying to find some inherent sweetness. This little girl looks and feels marvelous. Her mother told me with absolute radiance that they are doing well. Her smile was enormous and although our exchange was brief, I could feel her relief and her joy. It was wonderful.
The third family we encountered is a family I have written about a few times. Their daughter is also nearly 3 and they are still rather new to the process. In fact, they are in the middle of the hardest part. Her mother told me that her daughter's ANC had tanked and that they were planning on being admitted. How I remember those days like it was yesterday. Life is completely on hold virtually every single moment of every single day is suspended. It is almost impossible to imagine that there's an end-- that there's some real goodness waiting-- that there's true healing out there. What makes it even more peculiar is that her daughter looked fabulous! She was playful and sunny. There was no outward hint whatsoever that she would need to be admitted. This kind of disconnect is something I wrestled with constantly. I don't think I've got it nailed down yet. This mother is someone I like immensely. I brought her extra copies of MaryJanesFarm magazine, for which she was so grateful. I just wanted to give her a beautiful and gentle reminder that there is a lighter aspect to this process. They aren't there yet, but they will be. I reminded her that come Autumn, we'll be talking yarn and cider. She gave a hearty sigh and I'm certain didn't fully believe me but enjoyed the dose of hope nevertheless. I also gave her a very frilly lacey hankie and told her, "Sometimes you just gotta cry into something pretty!" She burst out laughing and we exchanged knowing.
Aria's ANC was 2170 today. Her hematocrit was 33.5! She's just doing GREAT. Her ANC is too high but I was reassured that it wasn't anything to worry about. We aren't going to up her medication yet. We'll give her another 2 weeks and if her ANC is the same, we'll dial her up and if it comes down then we'll leave it. This is the game. This is where we're at and I have to tell you, it is good, good, good!
The snow is melting. The sun is shining. The first flowers, snowdrops, have bloomed. Spring is Life's representative that rebirth is not only possible but visible and tangible. I see the hope that partners itself so intimately with Spring's design. I can almost taste it and I can certainly smell it and hear it. As we turn closer to the sun with lengthening days and rays uninhibited by cloudy formations, I feel so much lighter riding on the promise of this gift that was only a few months ago completely entombed and beyond reach. I face once again the light and beauty of hope and the promise of yet another day. ~j
A triumph for Aria!
February 27, 2009
Subject: A Triumph for Aria!
I just wanted you to know that Aria, for the first time in 14 months, was able to go to school every day this week! It was Dr. Seuss week so every day was a new theme requiring a new costume of some kind. It was so much fun. She not only had the energy to go but she had the desire! This is huge for us as you all well know.
I'm sitting here just rejoicing in her wellness. Everything about this moment is warm and sunny; literally and figuratively. I'm sighing with relief as I'm certain you are too. The smile I have barely fits on my face and it encompasses my entire being. This is a good place to be.
It is worth mentioning, however, that I know some of you worry about me particularly when I am dark and less than optimistic. I can sound lonely, doubtful and insecure and it is so tempting to want to ease that burden for me or to worry that I have succumbed to that as a perpetual state of being. It isn't comfortable for many of us being dark, doubtful, and even depressed but it is something we all know. It is simply a part of being human and I'm learning that to suppress it makes it worse. I'm learning that we're rather ill-equipped to face, accept and care for those aspects of our experience that rip us from our comfort zones. It makes perfect sense but because of our limited skills in this regard, it is easy, almost reflexive, to push it away, to hide, to suppress, to mask, to project, and to pretend.
I can't tell you not to worry about me. I wish you didn't have to. I wish I didn't have to worry about Aria but I do. It isn't a switch that I can turn on and off and like you, sometimes it is visceral despite my reasoning mind. But guess what, I'm learning that it passes. It is healed. It is replaced and it goes away, until the next time. It isn't relevant to me to try to reach a point in my life and my view where I no longer experience darkness or doubt. These are fine teachers despite their ill-manner. Because of what I learn from these darker moments, I can appreciate with great magnitude days like today.
Again, I think it illustrates so precisely what people mean when they say, "Experiences like this sure does you give you a greater sense of appreciation!"
Aria is healing. Aria is on a trajectory toward cure and we are doing everything we can to make that possible. Part of that process is my writing about it. What compliments my writing is you reading it and often sending me your thoughts. You are intricately woven into the tapestry of this journey whether you want to be or not. It is my privilege sharing it with you. I am indeed infinitely blessed. ~j
Subject: A Triumph for Aria!
I just wanted you to know that Aria, for the first time in 14 months, was able to go to school every day this week! It was Dr. Seuss week so every day was a new theme requiring a new costume of some kind. It was so much fun. She not only had the energy to go but she had the desire! This is huge for us as you all well know.
I'm sitting here just rejoicing in her wellness. Everything about this moment is warm and sunny; literally and figuratively. I'm sighing with relief as I'm certain you are too. The smile I have barely fits on my face and it encompasses my entire being. This is a good place to be.
It is worth mentioning, however, that I know some of you worry about me particularly when I am dark and less than optimistic. I can sound lonely, doubtful and insecure and it is so tempting to want to ease that burden for me or to worry that I have succumbed to that as a perpetual state of being. It isn't comfortable for many of us being dark, doubtful, and even depressed but it is something we all know. It is simply a part of being human and I'm learning that to suppress it makes it worse. I'm learning that we're rather ill-equipped to face, accept and care for those aspects of our experience that rip us from our comfort zones. It makes perfect sense but because of our limited skills in this regard, it is easy, almost reflexive, to push it away, to hide, to suppress, to mask, to project, and to pretend.
I can't tell you not to worry about me. I wish you didn't have to. I wish I didn't have to worry about Aria but I do. It isn't a switch that I can turn on and off and like you, sometimes it is visceral despite my reasoning mind. But guess what, I'm learning that it passes. It is healed. It is replaced and it goes away, until the next time. It isn't relevant to me to try to reach a point in my life and my view where I no longer experience darkness or doubt. These are fine teachers despite their ill-manner. Because of what I learn from these darker moments, I can appreciate with great magnitude days like today.
Again, I think it illustrates so precisely what people mean when they say, "Experiences like this sure does you give you a greater sense of appreciation!"
Aria is healing. Aria is on a trajectory toward cure and we are doing everything we can to make that possible. Part of that process is my writing about it. What compliments my writing is you reading it and often sending me your thoughts. You are intricately woven into the tapestry of this journey whether you want to be or not. It is my privilege sharing it with you. I am indeed infinitely blessed. ~j
realization
February 24, 2009
Subject: Realization
This is a totally self-indulgent email. Consider yourself forewarned..
It's taken me several days to write and was initially inspired by something other than what it has come to now, in this moment, to mean to me. You see, I had this overwhelming urge to get this out but didn't fully understand why and so I hesitated filling myself with doubt and insecurity. I think I know now.
A few days ago I had a conversation with a mother who has been only 3 months in the process of her daughter's treatment for leukemia. She said things like, "People just don't understand. They try to, but they just can't get the emotional complexities that something like this creates." She's not in a place to hear me contradict her, so I listened. But once again it reminds me that I do not believe that people, that you, can't understand what I'm going through. Many of you have expressed to me how my words resonate, not because we share something specific in common, ie, pediatric cancer, but because we all have things in our lives that are really, really hard. We can understand one another precisely because we are able to transcend the specifics of what makes us struggle, what makes life hard, what makes us doubt and what makes us cry and focus instead on understanding that common human experience.
Still, I was thinking about this mother saying, "They just don't understand." I was picturing her holding her arm and hand out away from her body as she said that. It is a halting physical and emotional expression. I can't help but wonder if it isn't a mere coping mechanism in a process that has just begun for her. I can't help but wonder if she'll reach a place where she can turn her hand around and bring it close to her heart and truthfully acknowledge, "I don't understand." I think this is very difficult to do and I know I struggle with it but I also know it is the only way to healing.
I was interrupted as I finished what you just read. I had to go pick up Aria from school and on my way I was grappling with whether or not I should send what follows below. I was waiting for Aria when I began reading through a book a friend, Eve Watson Adamson wrote, "The Complete Idiot's Guide to Zen Living." I've read through it already and it is light, heavy, witty, serious, informative and fun. I highly recommend it. I re-read the section on Fear "The Source of Fear" and "Pull Off the Mask." Reading her words helped me identify the process I went through that you are about to read. I realize I needed to share with you to show how I discovered a fear and how I'm beginning to pull off that mask and know my true Self. Thank you Eve, your words helped me label this process in a way that reserves judgment and allows it to be what it is. I feel safer sharing it.
When I was driving home with the girls in the car, I turned on the radio, something I rarely do. I was thrilled to hear the song that was playing. It gave me permission to send this. In the words of John Mayer from his song "Say" he sings, "Say what you need to say."
This is what I have to say:
I've recently reconnected with some friends I knew in high school. I was told by one of them that a mutual friend remembered me by "always having perfect hair." I groaned when I read this. It tells me that my attachment to hair and my hair in particular is an old one. What is even more telling however is the realization that I spent an awful lot of time in front of the mirror grooming, staring at myself. This isn't anything I am proud of but at the same time it is such a wonderful window into my world as a teenager. Appearances were everything obscuring the reality of their nothingness but I didn't have the life experience to understand that yet. Thus, appearances are everything when one is only 16 years old consumed by the dictates of culture and fashion. It is a difficult journey out of that kind of nonsense and escape, back into a world that is, I believe, more genuine but not without its own challenges.
As I was quiet with those memories, it occurred to me that I couldn't remember the last time I spent a significant amount of time in front of the mirror grooming my now short, graying hair, perusing the details of my face now lined and freckled, comparing myself to impossible standards and inflicting tiny little stabs at my sense of self. I decided I would take a good long look and this is what I saw.
We have a large antique mirror hanging on our bedroom wall. It is heavy with an oak frame and slightly speckled with black dots. Underneath it are 2 large baskets. One is overflowing with children's books that offer the kids their night-time reading choices. There are always a few that have spilled over and remain on the floor because it is often too much of a bother to pick them and put them away. The other basket is an apple picking basket that will one day see that purpose but for now it is the perfect basket for all of Rianna's diaper changing needs. This is what is surrounding me as I begin to take a close look.
I remember nearly 30 years ago, I would sit on the floor of my bedroom in front of a similar mirror. Surrounding me, then, were small baskets of make-up, perfume and hair bobbles. There was always a curling iron and blow dryer in arm's reach and invariably some kind of boom box for cassettes or a record player. I don't remember having many teen magazines or fashion magazines littering my bed and desk, but I'm sure I must have. I can't think of being so easily influenced by the dictates of others without that kind of imagery constantly assaulting my senses.
I took notice of the things that surround me now and I smiled at the realness of it, the genuineness of it, and the beauty of it. I was filled with a sense of accomplishment. I have abandoned for all practical purposes what offers so little meaning on the grand scale of life for what offers meaning that cannot be measured. I stood back from the mirror and looked at myself. I was wearing my sort of traditional look; skirt, shirt, tights and clogs. All black. My hair was pulled back with a black rubber band, which is virtually the only kind of bobble I use and my head was covered with a black scarf I made from a piece of flannel scrap. I wore no make-up with the exception of some tinted lip gloss and the only jewelry I wore was my silver wedding band I made 18 years ago and 2 two sets of stud earrings I never take off.
I breathed deeply and thought, "Could you be more plain? Could you look more old country and old fashioned?" It was strange to have such thoughts so immediate in my mind. For some reason, I thought it necessary to slump a little and create a frumpy matronly look. I took a step forward and look into my eyes. I noticed that my skin was dry and wondered what someone would say and think if I ever went and had a facial. I thought, "I can just hear them scold me for having neglected my skin so much, which is clearly not preserving a youthful look." I noticed the aging spots on my face--the result of years of careless bathing under the sun's violent rays. I thought, "I wonder if my dermatologist can do something about those?" I looked at my face and thought it too full, which led to me to my overall physique, which I thought out of shape and over-weight. Tiny little jabs again and again stabbing my esteem. I shook my head and heard the inner voice of my mind shout, "What are you doing?" It was like being slapped and I was rather stunned trying to pull myself together when I heard my heart say, "Julia, why must you waste your time on the superficialities of fashion that have little to nothing to do with reason?" My mind chimed in saying, "Those thoughts you were just having? All of those innocent, truthful but nasty spirited thoughts were not coming from me! What you were hearing were the attitudes of some who dictate a lot and have nothing do to with you and what you are going through." My heart leaped and shouted, "Amen sister!" I burst out laughing and thought, "These old attachments take a long, long time to release."
My mind spoke again, "Julia, look again. How do you feel?"
I said, "I feel stiff and out of shape."
Mind replied, "You are."
I sighed, "I know."
Mind continued, "So, why are you out of shape? Spare me the excuses of children and busyness and what not. You are looking deeply so tell me, what is it?"
I stood there in front of that mirror and thought, "What is it? Why am I not in better shape? My spirit and my mind have never felt more secure but my body feels weak. What is it?"
Heart asked, "What is it Julia? Tell us."
After a moment or two I said, "Pain."
"Ahhhh" heart and mind hummed simultaneously. "Yes. Go on."
I got closer to the mirror looking, searching, wondering. For the past year, I've been avoiding doing anything that would cause me physical pain. Suddenly it was crystal clear. My avoidance of pain is absolutely related to my fear of getting sick, of getting cancer, of having to go through anything like what Aria has to endure, of dying and leaving my children and my husband and missing out on their lives. I've been in this strange state of anxiety where every time I feel a twinge, an ache, a soreness, I automatically think, "Oh my God, what if I have cancer?" It isn't something that I think about every day but it is there often enough. I know it is the voice of my irrational mind but that doesn't lessen my ability to hear it and to worry a little. Although I came to this realization a few weeks ago and have been thinking about this email since then, I hadn't actually written anything down. Now that I am and I'm listening to my voice as I type these words, tears stream down my face because it has been such a painful 13 months. Sometimes the hurt has no words, no expression, and no real source. Sometimes it isn't anything specific about Aria, it is simply everything about Aria, the hospital, the clinic, all the other kids, cancer, illness, death, life. Sometimes this hurt is a presence that grips my every awareness and I feel scared and sad but get through it somehow. My tears cleanse what aches and I really do feel better, stronger, braver and clearer.
So I stood there in front of my mirror and said aloud, "You have every reason to have this fear. It's ok."
Mind cut me off, "Well of course it is!"
I felt myself getting a bit annoyed with this thought. It feels a little dismissive even though I know it isn't meant to be. Still, I don't find those words comforting and because I don't, it tells me that that part of my emotional well-being isn't yet healed. The trauma and the shock of Aria's cancer is still raw and painful despite all the positives. I recognize that this is a wonderful insight enabling me to examine this less than rational thought that invades my mind periodically from a perspective of respect and gentility. I let it be what it is and I'm grateful.
I tell myself, "Julia, I understand that you are still scared and I don't think this reflects a lack of trust. I think it reflects what it means to be human and to embrace the complexity that is defined therein. You are not your fear. You are not your sorrow. You are not your joy. You are not your optimism. You are not your courage. You are all of these things and more. Most importantly, you-are-not-sick."
I breathed that in a minute or two. "I am not sick. I do not have cancer." Of course I still heard a nasty little whisper, "yet." but I burst out laughing when I did. "Stupid little shit!" I heard myself say through my giggles. I wondered for a moment if this is the voice of the Devil that I was taught about as a child. It seems to me that it is and so I stared at myself again and thought, "Is it possible to possess in one's spirit what is both devilish and divine?" I think it is and I'm finally learning to embrace both.
My mind wandered as my eyes turned from myself in the mirror to the view of our back yard that I could see through the door leading to a small balcony off our bedroom. My swing next to the playground looked lonely and I thought of the leaves coming in welcoming Spring in just a few months. New Life and the constant cycle of it all made me smile. My heart spoke up, "Julia. Hey Julia! How do you feel?"
I said, "I feel stiff and out of shape but I feel good. I feel ready. I can take a little more pain."
Mind and heart in unison said, "Good. Get to it!"
I've dusted off my yoga tapes and have welcomed that practice back into my life. I am sore and I ache but I am not sick and I am not dying. I am well and I am healing.
These words have been monumentally difficult to reveal to you. It is so hard to be vulnerable sometimes. It requires fortitude to face those things about myself that are absurd, sick, irrational, and mad let alone show them to you. However, I have to. The compulsion to expose myself in this way is overwhelming and I'm discovering that it is not only liberating, it is strengthening. It is a matter of building confidence to admit these things and know that I am not only these things. However, the habit of guarding these truths is a tough one to break but I must if I expect to 'live true.'
I was telling my Dad yesterday that when I hear things from other people like "I have good days and bad days" I understand what that means but I don't know what it looks like and I want to. This is what it looks like for me. I rarely have an entirely bad day. I have bad moments during a day but I also have wonderful moments. This email illustrates about 15 minutes of my struggle with good and bad on one day. I wonder if I'm alone in these thoughts. I don't think I am. I've convinced myself that you want to know what a good day or a bad day looks like from the perspective of a mother who has a child with cancer. I don't know if it's true and I really don't care. It helps me be so revealing and enables me to feel safe in doing so.
I took one last look in the mirror. I stood back a little. "Yeah, you're out of shape and a little over-weight but you're well as is your family and little else matters." I'm no longer a teen-ager needing to be prodded and jabbed by my little devilish voice. The voices of those encouraging me to conform in ways that aren't in the realm of my reality no longer serve a purpose but I acknowledge how old they are and how long they've lingered in my consciousness. I'd like to say that I've banished them completely from my thoughts but I don't think that's true. However, I have recognized them for what they are and I know in time they'll fade away. I take one final step toward my mirror and I hear myself say, "You don't need to be so afraid now. It's ok to feel pain." As I walked away, I thought about the phrase I hand sew on the labels I stitch onto the clothes I make for women and felt it finally applicable to me.
"I'm uniquely beautiful. I'm uniquely me." ~j
Subject: Realization
This is a totally self-indulgent email. Consider yourself forewarned..
It's taken me several days to write and was initially inspired by something other than what it has come to now, in this moment, to mean to me. You see, I had this overwhelming urge to get this out but didn't fully understand why and so I hesitated filling myself with doubt and insecurity. I think I know now.
A few days ago I had a conversation with a mother who has been only 3 months in the process of her daughter's treatment for leukemia. She said things like, "People just don't understand. They try to, but they just can't get the emotional complexities that something like this creates." She's not in a place to hear me contradict her, so I listened. But once again it reminds me that I do not believe that people, that you, can't understand what I'm going through. Many of you have expressed to me how my words resonate, not because we share something specific in common, ie, pediatric cancer, but because we all have things in our lives that are really, really hard. We can understand one another precisely because we are able to transcend the specifics of what makes us struggle, what makes life hard, what makes us doubt and what makes us cry and focus instead on understanding that common human experience.
Still, I was thinking about this mother saying, "They just don't understand." I was picturing her holding her arm and hand out away from her body as she said that. It is a halting physical and emotional expression. I can't help but wonder if it isn't a mere coping mechanism in a process that has just begun for her. I can't help but wonder if she'll reach a place where she can turn her hand around and bring it close to her heart and truthfully acknowledge, "I don't understand." I think this is very difficult to do and I know I struggle with it but I also know it is the only way to healing.
I was interrupted as I finished what you just read. I had to go pick up Aria from school and on my way I was grappling with whether or not I should send what follows below. I was waiting for Aria when I began reading through a book a friend, Eve Watson Adamson wrote, "The Complete Idiot's Guide to Zen Living." I've read through it already and it is light, heavy, witty, serious, informative and fun. I highly recommend it. I re-read the section on Fear "The Source of Fear" and "Pull Off the Mask." Reading her words helped me identify the process I went through that you are about to read. I realize I needed to share with you to show how I discovered a fear and how I'm beginning to pull off that mask and know my true Self. Thank you Eve, your words helped me label this process in a way that reserves judgment and allows it to be what it is. I feel safer sharing it.
When I was driving home with the girls in the car, I turned on the radio, something I rarely do. I was thrilled to hear the song that was playing. It gave me permission to send this. In the words of John Mayer from his song "Say" he sings, "Say what you need to say."
This is what I have to say:
I've recently reconnected with some friends I knew in high school. I was told by one of them that a mutual friend remembered me by "always having perfect hair." I groaned when I read this. It tells me that my attachment to hair and my hair in particular is an old one. What is even more telling however is the realization that I spent an awful lot of time in front of the mirror grooming, staring at myself. This isn't anything I am proud of but at the same time it is such a wonderful window into my world as a teenager. Appearances were everything obscuring the reality of their nothingness but I didn't have the life experience to understand that yet. Thus, appearances are everything when one is only 16 years old consumed by the dictates of culture and fashion. It is a difficult journey out of that kind of nonsense and escape, back into a world that is, I believe, more genuine but not without its own challenges.
As I was quiet with those memories, it occurred to me that I couldn't remember the last time I spent a significant amount of time in front of the mirror grooming my now short, graying hair, perusing the details of my face now lined and freckled, comparing myself to impossible standards and inflicting tiny little stabs at my sense of self. I decided I would take a good long look and this is what I saw.
We have a large antique mirror hanging on our bedroom wall. It is heavy with an oak frame and slightly speckled with black dots. Underneath it are 2 large baskets. One is overflowing with children's books that offer the kids their night-time reading choices. There are always a few that have spilled over and remain on the floor because it is often too much of a bother to pick them and put them away. The other basket is an apple picking basket that will one day see that purpose but for now it is the perfect basket for all of Rianna's diaper changing needs. This is what is surrounding me as I begin to take a close look.
I remember nearly 30 years ago, I would sit on the floor of my bedroom in front of a similar mirror. Surrounding me, then, were small baskets of make-up, perfume and hair bobbles. There was always a curling iron and blow dryer in arm's reach and invariably some kind of boom box for cassettes or a record player. I don't remember having many teen magazines or fashion magazines littering my bed and desk, but I'm sure I must have. I can't think of being so easily influenced by the dictates of others without that kind of imagery constantly assaulting my senses.
I took notice of the things that surround me now and I smiled at the realness of it, the genuineness of it, and the beauty of it. I was filled with a sense of accomplishment. I have abandoned for all practical purposes what offers so little meaning on the grand scale of life for what offers meaning that cannot be measured. I stood back from the mirror and looked at myself. I was wearing my sort of traditional look; skirt, shirt, tights and clogs. All black. My hair was pulled back with a black rubber band, which is virtually the only kind of bobble I use and my head was covered with a black scarf I made from a piece of flannel scrap. I wore no make-up with the exception of some tinted lip gloss and the only jewelry I wore was my silver wedding band I made 18 years ago and 2 two sets of stud earrings I never take off.
I breathed deeply and thought, "Could you be more plain? Could you look more old country and old fashioned?" It was strange to have such thoughts so immediate in my mind. For some reason, I thought it necessary to slump a little and create a frumpy matronly look. I took a step forward and look into my eyes. I noticed that my skin was dry and wondered what someone would say and think if I ever went and had a facial. I thought, "I can just hear them scold me for having neglected my skin so much, which is clearly not preserving a youthful look." I noticed the aging spots on my face--the result of years of careless bathing under the sun's violent rays. I thought, "I wonder if my dermatologist can do something about those?" I looked at my face and thought it too full, which led to me to my overall physique, which I thought out of shape and over-weight. Tiny little jabs again and again stabbing my esteem. I shook my head and heard the inner voice of my mind shout, "What are you doing?" It was like being slapped and I was rather stunned trying to pull myself together when I heard my heart say, "Julia, why must you waste your time on the superficialities of fashion that have little to nothing to do with reason?" My mind chimed in saying, "Those thoughts you were just having? All of those innocent, truthful but nasty spirited thoughts were not coming from me! What you were hearing were the attitudes of some who dictate a lot and have nothing do to with you and what you are going through." My heart leaped and shouted, "Amen sister!" I burst out laughing and thought, "These old attachments take a long, long time to release."
My mind spoke again, "Julia, look again. How do you feel?"
I said, "I feel stiff and out of shape."
Mind replied, "You are."
I sighed, "I know."
Mind continued, "So, why are you out of shape? Spare me the excuses of children and busyness and what not. You are looking deeply so tell me, what is it?"
I stood there in front of that mirror and thought, "What is it? Why am I not in better shape? My spirit and my mind have never felt more secure but my body feels weak. What is it?"
Heart asked, "What is it Julia? Tell us."
After a moment or two I said, "Pain."
"Ahhhh" heart and mind hummed simultaneously. "Yes. Go on."
I got closer to the mirror looking, searching, wondering. For the past year, I've been avoiding doing anything that would cause me physical pain. Suddenly it was crystal clear. My avoidance of pain is absolutely related to my fear of getting sick, of getting cancer, of having to go through anything like what Aria has to endure, of dying and leaving my children and my husband and missing out on their lives. I've been in this strange state of anxiety where every time I feel a twinge, an ache, a soreness, I automatically think, "Oh my God, what if I have cancer?" It isn't something that I think about every day but it is there often enough. I know it is the voice of my irrational mind but that doesn't lessen my ability to hear it and to worry a little. Although I came to this realization a few weeks ago and have been thinking about this email since then, I hadn't actually written anything down. Now that I am and I'm listening to my voice as I type these words, tears stream down my face because it has been such a painful 13 months. Sometimes the hurt has no words, no expression, and no real source. Sometimes it isn't anything specific about Aria, it is simply everything about Aria, the hospital, the clinic, all the other kids, cancer, illness, death, life. Sometimes this hurt is a presence that grips my every awareness and I feel scared and sad but get through it somehow. My tears cleanse what aches and I really do feel better, stronger, braver and clearer.
So I stood there in front of my mirror and said aloud, "You have every reason to have this fear. It's ok."
Mind cut me off, "Well of course it is!"
I felt myself getting a bit annoyed with this thought. It feels a little dismissive even though I know it isn't meant to be. Still, I don't find those words comforting and because I don't, it tells me that that part of my emotional well-being isn't yet healed. The trauma and the shock of Aria's cancer is still raw and painful despite all the positives. I recognize that this is a wonderful insight enabling me to examine this less than rational thought that invades my mind periodically from a perspective of respect and gentility. I let it be what it is and I'm grateful.
I tell myself, "Julia, I understand that you are still scared and I don't think this reflects a lack of trust. I think it reflects what it means to be human and to embrace the complexity that is defined therein. You are not your fear. You are not your sorrow. You are not your joy. You are not your optimism. You are not your courage. You are all of these things and more. Most importantly, you-are-not-sick."
I breathed that in a minute or two. "I am not sick. I do not have cancer." Of course I still heard a nasty little whisper, "yet." but I burst out laughing when I did. "Stupid little shit!" I heard myself say through my giggles. I wondered for a moment if this is the voice of the Devil that I was taught about as a child. It seems to me that it is and so I stared at myself again and thought, "Is it possible to possess in one's spirit what is both devilish and divine?" I think it is and I'm finally learning to embrace both.
My mind wandered as my eyes turned from myself in the mirror to the view of our back yard that I could see through the door leading to a small balcony off our bedroom. My swing next to the playground looked lonely and I thought of the leaves coming in welcoming Spring in just a few months. New Life and the constant cycle of it all made me smile. My heart spoke up, "Julia. Hey Julia! How do you feel?"
I said, "I feel stiff and out of shape but I feel good. I feel ready. I can take a little more pain."
Mind and heart in unison said, "Good. Get to it!"
I've dusted off my yoga tapes and have welcomed that practice back into my life. I am sore and I ache but I am not sick and I am not dying. I am well and I am healing.
These words have been monumentally difficult to reveal to you. It is so hard to be vulnerable sometimes. It requires fortitude to face those things about myself that are absurd, sick, irrational, and mad let alone show them to you. However, I have to. The compulsion to expose myself in this way is overwhelming and I'm discovering that it is not only liberating, it is strengthening. It is a matter of building confidence to admit these things and know that I am not only these things. However, the habit of guarding these truths is a tough one to break but I must if I expect to 'live true.'
I was telling my Dad yesterday that when I hear things from other people like "I have good days and bad days" I understand what that means but I don't know what it looks like and I want to. This is what it looks like for me. I rarely have an entirely bad day. I have bad moments during a day but I also have wonderful moments. This email illustrates about 15 minutes of my struggle with good and bad on one day. I wonder if I'm alone in these thoughts. I don't think I am. I've convinced myself that you want to know what a good day or a bad day looks like from the perspective of a mother who has a child with cancer. I don't know if it's true and I really don't care. It helps me be so revealing and enables me to feel safe in doing so.
I took one last look in the mirror. I stood back a little. "Yeah, you're out of shape and a little over-weight but you're well as is your family and little else matters." I'm no longer a teen-ager needing to be prodded and jabbed by my little devilish voice. The voices of those encouraging me to conform in ways that aren't in the realm of my reality no longer serve a purpose but I acknowledge how old they are and how long they've lingered in my consciousness. I'd like to say that I've banished them completely from my thoughts but I don't think that's true. However, I have recognized them for what they are and I know in time they'll fade away. I take one final step toward my mirror and I hear myself say, "You don't need to be so afraid now. It's ok to feel pain." As I walked away, I thought about the phrase I hand sew on the labels I stitch onto the clothes I make for women and felt it finally applicable to me.
"I'm uniquely beautiful. I'm uniquely me." ~j
Aria's February 18 clinic and chemo
February 18, 2009
Subject: Aria’s February Clinic and chemo
Yesterday, February 17, 2009, we went to clinic for Aria's monthly vincristine chemotherapy and an exam with Dr. Trobaugh. As you know, we are still trying to adjust her medication so that her ANC is balanced between 500-1500. We increased her daily 6MP chemo to roughly 50% and kept her weekly methotrexate chemo at just under 50%. For some reason I still struggle with accepting the idea that although she's only receiving 50% of the full amount of chemo, she's getting enough. Intellectually and very superficially I understand it. I understand despite that I don't have a 3D working picture of how the body actually metabolizes drugs, how proteins are exchanged, how genes are altered and so forth. I can process that Aria's body only needs 1/2 the dosing to have the same effect as full dosing but for whatever reason, I'm still hanging on to some anxiety about it. For some reason, that piece of anxiety is still delicious to me and I need to sample it once in a while. I need to question, worry and fear that 'she isn't getting enough' of the drugs. 50% doesn't sound like enough. Giving her 1/2 the chemo because she's so sensitive makes me go to a place that murmurs, "Oh my God, we are not obliterating these cancers cells with full-on blast power because her body is so weak, errrr, I mean sensitive. I just know those cancer cells are lurking somewhere just waiting to find an opportunity to come back since we're not able to zap'em with full power! Why can't we just give her the full amount and then we'll know for sure that we're doing everything we can!"
Ok, that's the voice of my anxious mind. I've nicknamed it, "A-Rashy" because it is anti-rational. I get it. I know, but there it is nevertheless. I swear, my rational mind and my irrational mind are like conjoined twins. They simply work together, one arguing with the other, but both always present. My rational mind, who has a more developed relationship with my heart, steps in and reminds me to breathe, relax, "just think for a moment." So I do and I see clearly Aria's sensitivity acting as strength not weakness, as responsiveness not rejection. These words help and I am calm again back in a place of understanding. Why is it then, that I still crave reassurance? It is tempting to want to discover an answer to that question, but let me assure you that I've fully accepted that "I simply do." So, I ask for reassurance every time without embarrassment or shame, without any negative voice whatsoever.
The clinic appointment was fine and routine. Aria is accustomed to it. She has little concern about what she has to do. She goes to get weighed and measured almost without thinking about it. She goes into the room to have her temperature and blood pressure taken without any resistance. When she had her port accessed, she was sitting on Doc's lap while I was entertaining Rianna with puppets and Krista (Aria's beloved Child Life Specialist) was playing the guitar. Aria didn't flinch. She didn't whine. She didn't whimper in fear. She didn't cower trying to avoid the poke coming at her. She sat there boldly displaying her chest and her port button while the nurse sterilized it and prepared it and then 'pop' she was accessed and ready for a blood draw. This process still makes me whoozie and I still find myself occasionally shaking my head thinking, "Is this really happening?" The next thing I hear is Aria saying in a sing-song way, "Come on blood! Come on blood!" She was cheering her blood on so that it would draw quick and easy. I sat there with my mouth hanging open in complete awe of her. Her blood was not drawing nicely, and she was beginning to scold it when Krista stepped in and said, "Looks like it's time for you to start strumming the guitar!" So Aria raked her fingers over the strings while Krista playes different cords and sings. It was so lovely and gentle and sweet. It is a place of familiarity and confidence that I am grateful for because I can sense still so clearly nearby the place of disbelief, uncertainty, fear, and sorrow.
I suppose I would describe the place I now find myself as an expansive plateau that is both beautiful and sparse. It would be easy to wander this path becoming bored with scenery that doesn't change, traverse or meander. But I've learned that this plateau isn't designed for gazing upon the broader view. It is meant, rather, to look closely, to pause often, to listen deeply, to wonder, to take time and to notice.
After her blood draw was taken, we returned to the play area and played with Krista. Aria watched the television most of the time, while Rianna colored mostly on her fingers! At first there were several families milling around but within 10 minutes most of them left leaving one other mother and her nearly 3 year old daughter who also has ALL. I wrote about them a few emails back. They spent a good 6 weeks in the hospital when she was first diagnosed but now that she is an outpatient, she is doing very well. She is nearing the end of her second phase of treatment and although she appeared very pale, she was energetic and full of smiles. I was amazed because Aria at this time was just emerging from her steroid cocoon. She was not energetic. I was still carrying her everywhere. She was not playful. As I remember, Aria was withdrawn and sad. It was so difficult and we didn't know then that it would get worse. It was nice to see this little one feeling well and doing well. Her mother told me, "Mornings are hard. She can't sit up or walk on her own because she's so weak." I remember those days very clearly and I found myself silent.
What followed was a wonderful conversation. She wanted to know more about Aria and how she was doing. She said, "I keep hoping it will get better and it doesn't." I let that sink in a minute and noticed that she has beautiful blue eyes and a smile that conjures warmth and security. I stared at her face a while and thought about how often I heard people tell me, "Oh, it gets so much better!" I remember believing them but feeling dissatisfied somehow. My thirst for, "how is it better?" was never quenched. My hunger for, "is Aria ever going to feel really good again?" was never satiated. My desire for, "are we ever going to have a day where we almost forget she's sick?" was always neglected. Although I stared into this mother's eyes for the briefest of moments, I felt as if I had fallen deeply into a pool of memory that was her reality. I told her gently, "I doesn't get better. It gets different." Her smile faded slightly as I knew it would and I didn't spare her the truth. "Really?" she said softly. I told her, "For us, some things got a lot better but some things got worse." I gave her some examples. I told her that for about a month Aria didn't smile. She didn't have any joy and one day she did. One day she smiled and the next day she giggled. It was glorious and not short-lived. Slowly, she emerged and we saw our beloved daughter in full glory. This was a tremendous improvement but what came with it was daily vomiting, leg weakness and no desire to play. This beautiful gentle mother nodded and was trying to smile in a way that solicited her lips to battle tears that were about to declare mutiny. I understood this expression very well. I reminded her of how far she has already travelled. I told her the number of times people mentioned that maintenance was the goal. It was the place to be and things would be so much better. I told her that I wanted to know more. “What gets better? What does that look like exactly? Give me specifics. Give me something tangible.” She smiled brightly and said, "Exactly!" I told her, "One day in the next few months you will have this desire to spin on your spinning wheel. It will be almost mindless and automatic as if walking into the arms of an old friend. You'll sit there spinning with nothing particular on your mind and then you'll realize, "Wow! I have space in my mind for spinning wool!" You'll realize that thoughts of cancer no longer occupy every single bit of your mind."
She didn't say anything. She bit her lip a little smiling and nodding. I like her immensely. She has a bravery about her that I admire. She's genuine and vast and I feel a connection to her. We were then distracted with our children. She sat down with her daughter and played and I with mine coloring. We spoke of simple things and then the conversation turned and I can't remember how it happened but suddenly we were talking about the idea that "God doesn't give us more than we can handle." (Pardon me while I gag myself!) She groaned as we discussed this idea and laughed in exasperation and she said, "I'm sorry but nowhere in the Bible does it say that! No where!" She said it with such confidence and knowing that I believed her. We were about to take this idea into some form of discussion when a nurse came into the playroom looking for something but having overheard our conversation, she chimed in with, "Yeah, I was at church yesterday and our pastor was talking about how we need to rejoice in our valleys!" We erupted in laughter. This nurse has a son with a very rare condition where he is basically allergic to food. I can't begin to understand her journey and when I stop and think about the unknowns that she faces day in and day out, I wonder, "How does she find the strength to move?" She continued, "Uh-uh! There is no way I am rejoicing in my valley right now. No way! But I am learning a lot...." We were all rather thoughtful for a moment or two and decided that 'rejoice' was entirely the wrong word. We accept where we are. We learn from it. We reflect. We grow. We're grateful but we are not celebratory or delighted by these surroundings. We can find things in which to rejoice but the journey through the valley is dark, haunting, threatening, and down-right scary.
I think these ideas: "God doesn't give us more than we can handle" or "Rejoice in your hardship" are a lot like comfort food. They sound good. They taste good. They fulfill a craving and a hunger. They're even mildly nutritious but they are not sustaining. They are but a tiny morsel of truth presented on the platter of life. It is no wonder that I crave so much more. The mother and her daughter were called away for their appointment and thus ended our time together. But, not before I told her about Mary Jane Butters, her magazine and her website. A spinner in Spokane must get hooked up with MaryJanesFarm! She was thrilled and I hope it gave her a little light to gaze upon and warm her spirit.
Soon after it was Aria's turn. We met with Dr. Trobaugh who came into the exam room all smiles. We were completely relaxed and I dare say for the first time in 13 months I didn't feel anxious talking with her, dreading what she might have to say. I was basking in Aria's wellness and this gave me such jubilant calm. Aria was lying on the examination table impersonating a lion on the African plains. She was emitting a low menacing growl. Rianna quickly heard the call and threw herself on all fours on the floor. Like a lioness crouching low, she slowly crept toward Dr. Trobaugh, who didn't miss a beat and looked at me nervously saying, "I'm a little scared. What should I do?" I whispered, "Move very slowly." Dr. Trobaugh did and winking at me, she waited for Rianna's approach. Desperately trying to suppress our laughter, we watched Rianna creep up to Dr.Trobaugh, give a little roar and then a big claw swipe at her feet! I thought Dr. Trobaugh would fall off of her chair. We were in stitches until we realized we had awakened the large lion resting on the examination table, uh, I mean plains. It was then that Aria sat up, gave a ferocious roar and yawned showing us her very sharp teeth! We were in hysterics. It was so much fun. Aria was still a lion when Dr. Trobaugh approached her in an attempt to listen to her heart. She walked carefully toward Aria slowly taking her stethoscope from around her neck. Aria continued to growl at her. Dr. Trobaugh, embracing our madness, stayed in character looking to me for guidance. I reached into my shirt and pulled out a zebra saying, "Here! give him this to chomp on. It's a zebra!" Dr. Trobaugh took from my hand the imaginary zebra and went to throw it to the lion but hesitated. She said, "Is it a whole zebra or what?" "No! No!" I began, "It's a juicy hind quarter!" "Oh Good!" was her reply and she threw the zebra leg at the lion, who quickly began to consume it! The little lion meanwhile, not to be left out, looked to me for another zebra. Alas, she had to be satisfied, however, with a wildebeest!
Aria's heartbeat was excellent. Her appetite, clearly fabulous! Her skin looks divine. Her feet and range of motion are normal. Her ANC was 1590, which is still slightly higher than we want but we are not going to change anything right now and Dr. Trobaugh assured me that everything, absolutely everything looks great. We'll return to clinic in 2 weeks and check her ANC then. Hopefully it will fall slightly and then stabilize but then again, it will be what it is and we'll go from there.
We left clinic shortly after. Doc and I stood in front of the elevators sighing. We were relieved, so relieved that everything is going well. At the same time, clinic is an exhausting experience. We were there 2 1/2 hours, most of that waiting, watching, wondering, worrying, remembering....
I'm no longer in the darkness of the valley and I'm grateful but I carry elements of it within my spirit and I tell you, honestly, it is heavy. But as I sit typing, I can see myself clearly upon the plateau of this journey. My head is held high. I am confident and I am strong. I have a smile upon my face and I can feel warmth and sense a glow. I'm walking toward the light that was barely visible a year ago. I have travelled so far and learned so much that my fear is lessening with every step. I walk toward 'knowing' in all that I do, say, think, and feel that all is well. ~j
Subject: Aria’s February Clinic and chemo
Yesterday, February 17, 2009, we went to clinic for Aria's monthly vincristine chemotherapy and an exam with Dr. Trobaugh. As you know, we are still trying to adjust her medication so that her ANC is balanced between 500-1500. We increased her daily 6MP chemo to roughly 50% and kept her weekly methotrexate chemo at just under 50%. For some reason I still struggle with accepting the idea that although she's only receiving 50% of the full amount of chemo, she's getting enough. Intellectually and very superficially I understand it. I understand despite that I don't have a 3D working picture of how the body actually metabolizes drugs, how proteins are exchanged, how genes are altered and so forth. I can process that Aria's body only needs 1/2 the dosing to have the same effect as full dosing but for whatever reason, I'm still hanging on to some anxiety about it. For some reason, that piece of anxiety is still delicious to me and I need to sample it once in a while. I need to question, worry and fear that 'she isn't getting enough' of the drugs. 50% doesn't sound like enough. Giving her 1/2 the chemo because she's so sensitive makes me go to a place that murmurs, "Oh my God, we are not obliterating these cancers cells with full-on blast power because her body is so weak, errrr, I mean sensitive. I just know those cancer cells are lurking somewhere just waiting to find an opportunity to come back since we're not able to zap'em with full power! Why can't we just give her the full amount and then we'll know for sure that we're doing everything we can!"
Ok, that's the voice of my anxious mind. I've nicknamed it, "A-Rashy" because it is anti-rational. I get it. I know, but there it is nevertheless. I swear, my rational mind and my irrational mind are like conjoined twins. They simply work together, one arguing with the other, but both always present. My rational mind, who has a more developed relationship with my heart, steps in and reminds me to breathe, relax, "just think for a moment." So I do and I see clearly Aria's sensitivity acting as strength not weakness, as responsiveness not rejection. These words help and I am calm again back in a place of understanding. Why is it then, that I still crave reassurance? It is tempting to want to discover an answer to that question, but let me assure you that I've fully accepted that "I simply do." So, I ask for reassurance every time without embarrassment or shame, without any negative voice whatsoever.
The clinic appointment was fine and routine. Aria is accustomed to it. She has little concern about what she has to do. She goes to get weighed and measured almost without thinking about it. She goes into the room to have her temperature and blood pressure taken without any resistance. When she had her port accessed, she was sitting on Doc's lap while I was entertaining Rianna with puppets and Krista (Aria's beloved Child Life Specialist) was playing the guitar. Aria didn't flinch. She didn't whine. She didn't whimper in fear. She didn't cower trying to avoid the poke coming at her. She sat there boldly displaying her chest and her port button while the nurse sterilized it and prepared it and then 'pop' she was accessed and ready for a blood draw. This process still makes me whoozie and I still find myself occasionally shaking my head thinking, "Is this really happening?" The next thing I hear is Aria saying in a sing-song way, "Come on blood! Come on blood!" She was cheering her blood on so that it would draw quick and easy. I sat there with my mouth hanging open in complete awe of her. Her blood was not drawing nicely, and she was beginning to scold it when Krista stepped in and said, "Looks like it's time for you to start strumming the guitar!" So Aria raked her fingers over the strings while Krista playes different cords and sings. It was so lovely and gentle and sweet. It is a place of familiarity and confidence that I am grateful for because I can sense still so clearly nearby the place of disbelief, uncertainty, fear, and sorrow.
I suppose I would describe the place I now find myself as an expansive plateau that is both beautiful and sparse. It would be easy to wander this path becoming bored with scenery that doesn't change, traverse or meander. But I've learned that this plateau isn't designed for gazing upon the broader view. It is meant, rather, to look closely, to pause often, to listen deeply, to wonder, to take time and to notice.
After her blood draw was taken, we returned to the play area and played with Krista. Aria watched the television most of the time, while Rianna colored mostly on her fingers! At first there were several families milling around but within 10 minutes most of them left leaving one other mother and her nearly 3 year old daughter who also has ALL. I wrote about them a few emails back. They spent a good 6 weeks in the hospital when she was first diagnosed but now that she is an outpatient, she is doing very well. She is nearing the end of her second phase of treatment and although she appeared very pale, she was energetic and full of smiles. I was amazed because Aria at this time was just emerging from her steroid cocoon. She was not energetic. I was still carrying her everywhere. She was not playful. As I remember, Aria was withdrawn and sad. It was so difficult and we didn't know then that it would get worse. It was nice to see this little one feeling well and doing well. Her mother told me, "Mornings are hard. She can't sit up or walk on her own because she's so weak." I remember those days very clearly and I found myself silent.
What followed was a wonderful conversation. She wanted to know more about Aria and how she was doing. She said, "I keep hoping it will get better and it doesn't." I let that sink in a minute and noticed that she has beautiful blue eyes and a smile that conjures warmth and security. I stared at her face a while and thought about how often I heard people tell me, "Oh, it gets so much better!" I remember believing them but feeling dissatisfied somehow. My thirst for, "how is it better?" was never quenched. My hunger for, "is Aria ever going to feel really good again?" was never satiated. My desire for, "are we ever going to have a day where we almost forget she's sick?" was always neglected. Although I stared into this mother's eyes for the briefest of moments, I felt as if I had fallen deeply into a pool of memory that was her reality. I told her gently, "I doesn't get better. It gets different." Her smile faded slightly as I knew it would and I didn't spare her the truth. "Really?" she said softly. I told her, "For us, some things got a lot better but some things got worse." I gave her some examples. I told her that for about a month Aria didn't smile. She didn't have any joy and one day she did. One day she smiled and the next day she giggled. It was glorious and not short-lived. Slowly, she emerged and we saw our beloved daughter in full glory. This was a tremendous improvement but what came with it was daily vomiting, leg weakness and no desire to play. This beautiful gentle mother nodded and was trying to smile in a way that solicited her lips to battle tears that were about to declare mutiny. I understood this expression very well. I reminded her of how far she has already travelled. I told her the number of times people mentioned that maintenance was the goal. It was the place to be and things would be so much better. I told her that I wanted to know more. “What gets better? What does that look like exactly? Give me specifics. Give me something tangible.” She smiled brightly and said, "Exactly!" I told her, "One day in the next few months you will have this desire to spin on your spinning wheel. It will be almost mindless and automatic as if walking into the arms of an old friend. You'll sit there spinning with nothing particular on your mind and then you'll realize, "Wow! I have space in my mind for spinning wool!" You'll realize that thoughts of cancer no longer occupy every single bit of your mind."
She didn't say anything. She bit her lip a little smiling and nodding. I like her immensely. She has a bravery about her that I admire. She's genuine and vast and I feel a connection to her. We were then distracted with our children. She sat down with her daughter and played and I with mine coloring. We spoke of simple things and then the conversation turned and I can't remember how it happened but suddenly we were talking about the idea that "God doesn't give us more than we can handle." (Pardon me while I gag myself!) She groaned as we discussed this idea and laughed in exasperation and she said, "I'm sorry but nowhere in the Bible does it say that! No where!" She said it with such confidence and knowing that I believed her. We were about to take this idea into some form of discussion when a nurse came into the playroom looking for something but having overheard our conversation, she chimed in with, "Yeah, I was at church yesterday and our pastor was talking about how we need to rejoice in our valleys!" We erupted in laughter. This nurse has a son with a very rare condition where he is basically allergic to food. I can't begin to understand her journey and when I stop and think about the unknowns that she faces day in and day out, I wonder, "How does she find the strength to move?" She continued, "Uh-uh! There is no way I am rejoicing in my valley right now. No way! But I am learning a lot...." We were all rather thoughtful for a moment or two and decided that 'rejoice' was entirely the wrong word. We accept where we are. We learn from it. We reflect. We grow. We're grateful but we are not celebratory or delighted by these surroundings. We can find things in which to rejoice but the journey through the valley is dark, haunting, threatening, and down-right scary.
I think these ideas: "God doesn't give us more than we can handle" or "Rejoice in your hardship" are a lot like comfort food. They sound good. They taste good. They fulfill a craving and a hunger. They're even mildly nutritious but they are not sustaining. They are but a tiny morsel of truth presented on the platter of life. It is no wonder that I crave so much more. The mother and her daughter were called away for their appointment and thus ended our time together. But, not before I told her about Mary Jane Butters, her magazine and her website. A spinner in Spokane must get hooked up with MaryJanesFarm! She was thrilled and I hope it gave her a little light to gaze upon and warm her spirit.
Soon after it was Aria's turn. We met with Dr. Trobaugh who came into the exam room all smiles. We were completely relaxed and I dare say for the first time in 13 months I didn't feel anxious talking with her, dreading what she might have to say. I was basking in Aria's wellness and this gave me such jubilant calm. Aria was lying on the examination table impersonating a lion on the African plains. She was emitting a low menacing growl. Rianna quickly heard the call and threw herself on all fours on the floor. Like a lioness crouching low, she slowly crept toward Dr. Trobaugh, who didn't miss a beat and looked at me nervously saying, "I'm a little scared. What should I do?" I whispered, "Move very slowly." Dr. Trobaugh did and winking at me, she waited for Rianna's approach. Desperately trying to suppress our laughter, we watched Rianna creep up to Dr.Trobaugh, give a little roar and then a big claw swipe at her feet! I thought Dr. Trobaugh would fall off of her chair. We were in stitches until we realized we had awakened the large lion resting on the examination table, uh, I mean plains. It was then that Aria sat up, gave a ferocious roar and yawned showing us her very sharp teeth! We were in hysterics. It was so much fun. Aria was still a lion when Dr. Trobaugh approached her in an attempt to listen to her heart. She walked carefully toward Aria slowly taking her stethoscope from around her neck. Aria continued to growl at her. Dr. Trobaugh, embracing our madness, stayed in character looking to me for guidance. I reached into my shirt and pulled out a zebra saying, "Here! give him this to chomp on. It's a zebra!" Dr. Trobaugh took from my hand the imaginary zebra and went to throw it to the lion but hesitated. She said, "Is it a whole zebra or what?" "No! No!" I began, "It's a juicy hind quarter!" "Oh Good!" was her reply and she threw the zebra leg at the lion, who quickly began to consume it! The little lion meanwhile, not to be left out, looked to me for another zebra. Alas, she had to be satisfied, however, with a wildebeest!
Aria's heartbeat was excellent. Her appetite, clearly fabulous! Her skin looks divine. Her feet and range of motion are normal. Her ANC was 1590, which is still slightly higher than we want but we are not going to change anything right now and Dr. Trobaugh assured me that everything, absolutely everything looks great. We'll return to clinic in 2 weeks and check her ANC then. Hopefully it will fall slightly and then stabilize but then again, it will be what it is and we'll go from there.
We left clinic shortly after. Doc and I stood in front of the elevators sighing. We were relieved, so relieved that everything is going well. At the same time, clinic is an exhausting experience. We were there 2 1/2 hours, most of that waiting, watching, wondering, worrying, remembering....
I'm no longer in the darkness of the valley and I'm grateful but I carry elements of it within my spirit and I tell you, honestly, it is heavy. But as I sit typing, I can see myself clearly upon the plateau of this journey. My head is held high. I am confident and I am strong. I have a smile upon my face and I can feel warmth and sense a glow. I'm walking toward the light that was barely visible a year ago. I have travelled so far and learned so much that my fear is lessening with every step. I walk toward 'knowing' in all that I do, say, think, and feel that all is well. ~j
presence
February 5, 2009
Subject: presence
I've recently had the wonderful good fortune of rediscovering someone I've known a long, long time. She and I were never good friends growing up but were quiet acquaintances admiring each other from afar. She told me recently of attending a yoga class that was structured around being present and living fully in the moment. I like this very much and it makes me think about a breathing meditation by Thich Nhat Hanh;
"Breathing in I calm my body.
Breathing out I smile.
Dwelling in the present moment.
For I know this is a wonderful moment."
I've been breathing these 4 verses for years and it always comes to mind whenever I get behind the wheel of my car. I'm reminded how I loathe to be in a hurry and how I rarely find myself so. Hurrying makes me careless. My body moves in careless ways. My tone is careless in its grumbles and growls. My words can be careless and my mindfulness of others equally so. Hurrying brings me to a state of being that is outside the realm of who I know myself to be. I don't like who I become under those conditions and I have to remind myself to "return to myself". Breathing these lines helps. I'm calmer. I'm more relaxed and I feel more like myself. I wonder if this is what is meant to be present and in the moment?
I've been giving it a lot of thought recently. I hear it all the time and especially since Aria's journey began. Tragedy always seems to act as a reminder that 'the moment' is all we have. I've written about it several times and I believe it to be true becoming ever more precious and cherished especially as one faces the end. Moments become opportunities to extract meaning perhaps as a way to make sense of it all or to build a depository of memories or to simply hang on to what is so difficult to let go. It isn't a bad thing to have such reminders of the importance of living presently. We all know but I'm certain we all struggle to actually live it. We are a culture that is constantly motioning toward the next thing at a pace that barely allows us to acknowledge our present thing. It is no wonder that our days hurry along dribbling moments into the next with little distinction. But when Life hurls shattering reality, suddenly the seamlessness ends. Moments are keenly separate and distinct. Moments linger and for me, I languished in many of them.
Living presently and fully in those moments was the last thing I wanted to do, which presents wonderful questions. What exactly does living in the moment mean and look like and feel like? What if you hate the moment? What good can be found by living so fully in it? I was thinking about this last night in bed when,
suddenly, a bizarre image flashed before my eyes. I imagined being thrown into a huge pit of manure hoping to die quickly from gaseous poisoning.
That is an ugly moment to be sure and certainly not what one typically thinks of when hearing the zen sentiment of 'being present and in the moment." Instead, I suspect one imagines imagery of flowering trees, babbling streams, gentle breezes, freshness in the air, and the hint of tinkling bells calling one to peace and tranquility. I know this is what I imagine when I hear the encouragement to live in the moment. This is the kind of moment we all wish to live in so fully, isn't it? The feelings this environment creates are certainly what I want to have as the backbone of my being but pray tell, what if the moment is littered by catastrophe and suddenly those feelings of defining peace are pulverized? What is one to do?
I'm writing about this because I really do believe and like that sentiment but it also gags me to my core because it seems such a prissy and flimsy notion when challenged by the moment that is urgent, critical, sterile, fearsome, unknowing, full of waiting, anxious, noisy, beeping, paranoid and completely without peace. I think it almost impossible and mildly ridiculous to try to be 'in the moment' that one defines as tranquility and calm when bombarded with anything but. I think back to those first few weeks and months and it was all I could do not to run from the moments of my day. I remember thinking I want to tear out my front door and run screaming down the street, but death was swirling maliciously around there and I was scared to open it. I remember thinking I could sneak out the back door and try to grasp some kind of semblance of me 'out there' somewhere. I remember looking at my pasture thinking, "Is that the place out there? Will I find and return to myself there? Can I walk my labrynth and find some peace and tranquility in the moments of each of my steps?" I tried and my moments were not peaceful or tranquil. They were laden with darkness tickled by fleeting glimmers of light and brilliance. I hated being present to those moments and I found writing about them in excruciating detail helpful and healing. I suppose the process of writing enabled me to be in those moments that were so hard. I tell you truly, I understand fully why people resist. Why they busy themselves with distraction going from one dribbling thing into another. It was very painful and I was denied the option to busy myself otherwise I'm not sure I would have chosen the path I did. I had to stay put and watch Aria. I couldn't run from her even though I wanted to sometimes. I couldn't believe I could be so cowardly and have those thoughts but I did and I acknowledged them when they came. So for me the idea of living fully in the moment and being present in the moment has changed somewhat.
We don't want to live in moments that are uncomfortable. I don't. I hate being uncomfortable. I abhor feeling stressed and anxious and do all kinds of things to either avoid it or get out of it and get back to the calm and tranquility that defines for me 'being in the moment'.
So you see, when I think of being present and IN the moment I tend to think of beautiful things. I imagine my truest self. I see myself as unique, calm, confident and a host of other things that I aspire to be. Aria's cancer and the journey we have traveled has shown me a great deal in this regard. I've learned not be in one moment thinking of the next, although those habits creep in and I recognize them and return to myself once again. I'm getting to a place where I no longer look at my chores, for instance, as a check list-- one thing leading to another so that I'm never really present to much of anything. I suppose this is the appreciation people talk so much about that one gains after tragedy. Simple little things have more meaning because the fragility of it all is so blatant. This is all well and good but it doesn't address those moments that challenge the very essence of my state of being. I've discovered that it isn't enough to be present IN each moment, but to be present TO the moment.
This may seem pedantic but the idea helps me stay committed to my mantra of "living true." To be present in the moment offers me the zen perspective and invites me to come back to my true self. To be present TO the moment enables me to embrace the situation and all the feelings that come with it with validity, confidence and without fear. When I'm scared and I'm pacing like a caged beast, it is so hard to be in that place, that moment. I hate it and would like nothing more than to escape. When faced with terrifying and ugly moments, it is so tempting to breathe deeply while attempting to grasp for a little of that zen sentiment telling myself again and again that everything will be fine. I can see myself trying to deny the panic as I rock back and forth with my head down, my fingers in my ears breathlessly chanting, "this can't be happening! this can't be happening! no no no." I've learned that this is denial's ploy that likes nothing better than to prey upon one's squirminess. I've learned that the more I resist the discomfort, the farther from myself I go and the harder it is to find that peace. Sometimes I can't be present and in the moment because how I define that doesn't allow it. So I'm present TO the moment and I'm learning to befriend what makes me squirm, what makes me ache, what breaks my heart, what makes me cry, and what makes me want to run. When I'm in my zen place I'm ok. When I'm hurting and I'm anxious, I'm ok. When I'm worried and mildly irrational, I'm ok. When I need extra reassurance and some tender care, I'm ok. When my confidence wavers and my insecurities are evident, I'm ok. When I'm not ok, I'm ok. This is what being in the moment and present to the moment has come to mean for me.
Very simply stated, in every moment of every day, my goal is to simply be. ~j
Subject: presence
I've recently had the wonderful good fortune of rediscovering someone I've known a long, long time. She and I were never good friends growing up but were quiet acquaintances admiring each other from afar. She told me recently of attending a yoga class that was structured around being present and living fully in the moment. I like this very much and it makes me think about a breathing meditation by Thich Nhat Hanh;
"Breathing in I calm my body.
Breathing out I smile.
Dwelling in the present moment.
For I know this is a wonderful moment."
I've been breathing these 4 verses for years and it always comes to mind whenever I get behind the wheel of my car. I'm reminded how I loathe to be in a hurry and how I rarely find myself so. Hurrying makes me careless. My body moves in careless ways. My tone is careless in its grumbles and growls. My words can be careless and my mindfulness of others equally so. Hurrying brings me to a state of being that is outside the realm of who I know myself to be. I don't like who I become under those conditions and I have to remind myself to "return to myself". Breathing these lines helps. I'm calmer. I'm more relaxed and I feel more like myself. I wonder if this is what is meant to be present and in the moment?
I've been giving it a lot of thought recently. I hear it all the time and especially since Aria's journey began. Tragedy always seems to act as a reminder that 'the moment' is all we have. I've written about it several times and I believe it to be true becoming ever more precious and cherished especially as one faces the end. Moments become opportunities to extract meaning perhaps as a way to make sense of it all or to build a depository of memories or to simply hang on to what is so difficult to let go. It isn't a bad thing to have such reminders of the importance of living presently. We all know but I'm certain we all struggle to actually live it. We are a culture that is constantly motioning toward the next thing at a pace that barely allows us to acknowledge our present thing. It is no wonder that our days hurry along dribbling moments into the next with little distinction. But when Life hurls shattering reality, suddenly the seamlessness ends. Moments are keenly separate and distinct. Moments linger and for me, I languished in many of them.
Living presently and fully in those moments was the last thing I wanted to do, which presents wonderful questions. What exactly does living in the moment mean and look like and feel like? What if you hate the moment? What good can be found by living so fully in it? I was thinking about this last night in bed when,
suddenly, a bizarre image flashed before my eyes. I imagined being thrown into a huge pit of manure hoping to die quickly from gaseous poisoning.
That is an ugly moment to be sure and certainly not what one typically thinks of when hearing the zen sentiment of 'being present and in the moment." Instead, I suspect one imagines imagery of flowering trees, babbling streams, gentle breezes, freshness in the air, and the hint of tinkling bells calling one to peace and tranquility. I know this is what I imagine when I hear the encouragement to live in the moment. This is the kind of moment we all wish to live in so fully, isn't it? The feelings this environment creates are certainly what I want to have as the backbone of my being but pray tell, what if the moment is littered by catastrophe and suddenly those feelings of defining peace are pulverized? What is one to do?
I'm writing about this because I really do believe and like that sentiment but it also gags me to my core because it seems such a prissy and flimsy notion when challenged by the moment that is urgent, critical, sterile, fearsome, unknowing, full of waiting, anxious, noisy, beeping, paranoid and completely without peace. I think it almost impossible and mildly ridiculous to try to be 'in the moment' that one defines as tranquility and calm when bombarded with anything but. I think back to those first few weeks and months and it was all I could do not to run from the moments of my day. I remember thinking I want to tear out my front door and run screaming down the street, but death was swirling maliciously around there and I was scared to open it. I remember thinking I could sneak out the back door and try to grasp some kind of semblance of me 'out there' somewhere. I remember looking at my pasture thinking, "Is that the place out there? Will I find and return to myself there? Can I walk my labrynth and find some peace and tranquility in the moments of each of my steps?" I tried and my moments were not peaceful or tranquil. They were laden with darkness tickled by fleeting glimmers of light and brilliance. I hated being present to those moments and I found writing about them in excruciating detail helpful and healing. I suppose the process of writing enabled me to be in those moments that were so hard. I tell you truly, I understand fully why people resist. Why they busy themselves with distraction going from one dribbling thing into another. It was very painful and I was denied the option to busy myself otherwise I'm not sure I would have chosen the path I did. I had to stay put and watch Aria. I couldn't run from her even though I wanted to sometimes. I couldn't believe I could be so cowardly and have those thoughts but I did and I acknowledged them when they came. So for me the idea of living fully in the moment and being present in the moment has changed somewhat.
We don't want to live in moments that are uncomfortable. I don't. I hate being uncomfortable. I abhor feeling stressed and anxious and do all kinds of things to either avoid it or get out of it and get back to the calm and tranquility that defines for me 'being in the moment'.
So you see, when I think of being present and IN the moment I tend to think of beautiful things. I imagine my truest self. I see myself as unique, calm, confident and a host of other things that I aspire to be. Aria's cancer and the journey we have traveled has shown me a great deal in this regard. I've learned not be in one moment thinking of the next, although those habits creep in and I recognize them and return to myself once again. I'm getting to a place where I no longer look at my chores, for instance, as a check list-- one thing leading to another so that I'm never really present to much of anything. I suppose this is the appreciation people talk so much about that one gains after tragedy. Simple little things have more meaning because the fragility of it all is so blatant. This is all well and good but it doesn't address those moments that challenge the very essence of my state of being. I've discovered that it isn't enough to be present IN each moment, but to be present TO the moment.
This may seem pedantic but the idea helps me stay committed to my mantra of "living true." To be present in the moment offers me the zen perspective and invites me to come back to my true self. To be present TO the moment enables me to embrace the situation and all the feelings that come with it with validity, confidence and without fear. When I'm scared and I'm pacing like a caged beast, it is so hard to be in that place, that moment. I hate it and would like nothing more than to escape. When faced with terrifying and ugly moments, it is so tempting to breathe deeply while attempting to grasp for a little of that zen sentiment telling myself again and again that everything will be fine. I can see myself trying to deny the panic as I rock back and forth with my head down, my fingers in my ears breathlessly chanting, "this can't be happening! this can't be happening! no no no." I've learned that this is denial's ploy that likes nothing better than to prey upon one's squirminess. I've learned that the more I resist the discomfort, the farther from myself I go and the harder it is to find that peace. Sometimes I can't be present and in the moment because how I define that doesn't allow it. So I'm present TO the moment and I'm learning to befriend what makes me squirm, what makes me ache, what breaks my heart, what makes me cry, and what makes me want to run. When I'm in my zen place I'm ok. When I'm hurting and I'm anxious, I'm ok. When I'm worried and mildly irrational, I'm ok. When I need extra reassurance and some tender care, I'm ok. When my confidence wavers and my insecurities are evident, I'm ok. When I'm not ok, I'm ok. This is what being in the moment and present to the moment has come to mean for me.
Very simply stated, in every moment of every day, my goal is to simply be. ~j
Aria's February 3 clinic
February 3, 2009
Subject: Aria’s clinic today
This was by far one of the nicest clinic visits we've ever had. It was quiet, quiet, quiet there today and that is why it was so pleasant. There was no heart-ache and no real intensity. It was so nice to be able to breathe deeply and carry myself with a genuinely relaxed attitude.
Aria's ANC was 3350, which is still too high. We are dialing up her chemo a little and will re-check her counts on the 17th when she's scheduled for an exam and her big gun chemo. I was reassured once again that this is perfectly normal...no red flags...no concerns. I've accepted that despite the fact that I know this to be true I sometimes can't help myself from feeling anxious about it and needing reassurance. I've learned to assert myself and simply say, "I need some reassurance and I need to know that this is standard, routine stuff. I need to hear, yet again, that no little alarms are ringing in the background." When I hear the words, "This is all perfectly normal. This is to be expected. We have no concerns." I can't fully express in words my relief, although I'll try.
It is such a strange worry-relief cycle—the likes of which, I've ever known before. The imagery that comes to mind is being covered head to toe in caked-on sand and suddenly having warm water gently shower me clean. I can see the sand draining away and I sense immediately that I'm no longer preoccupied with gritty awareness. It is freedom.
Aria is feeling well. Her energy is high as are her spirits. She will be able attend school this week and we are planning to take the kids skiing this weekend once again. I am savoring this time of 'normal' even though I know it is only an illusion. Still, my sense of flexibility, groundedness and peace of mind is at its peak and again it feels like freedom.
My warm blessings to you as I extend my hands in peace. ~j
Subject: Aria’s clinic today
This was by far one of the nicest clinic visits we've ever had. It was quiet, quiet, quiet there today and that is why it was so pleasant. There was no heart-ache and no real intensity. It was so nice to be able to breathe deeply and carry myself with a genuinely relaxed attitude.
Aria's ANC was 3350, which is still too high. We are dialing up her chemo a little and will re-check her counts on the 17th when she's scheduled for an exam and her big gun chemo. I was reassured once again that this is perfectly normal...no red flags...no concerns. I've accepted that despite the fact that I know this to be true I sometimes can't help myself from feeling anxious about it and needing reassurance. I've learned to assert myself and simply say, "I need some reassurance and I need to know that this is standard, routine stuff. I need to hear, yet again, that no little alarms are ringing in the background." When I hear the words, "This is all perfectly normal. This is to be expected. We have no concerns." I can't fully express in words my relief, although I'll try.
It is such a strange worry-relief cycle—the likes of which, I've ever known before. The imagery that comes to mind is being covered head to toe in caked-on sand and suddenly having warm water gently shower me clean. I can see the sand draining away and I sense immediately that I'm no longer preoccupied with gritty awareness. It is freedom.
Aria is feeling well. Her energy is high as are her spirits. She will be able attend school this week and we are planning to take the kids skiing this weekend once again. I am savoring this time of 'normal' even though I know it is only an illusion. Still, my sense of flexibility, groundedness and peace of mind is at its peak and again it feels like freedom.
My warm blessings to you as I extend my hands in peace. ~j
Subscribe to:
Posts (Atom)