January 29, 2009
Subject: The beauty of our life…
I recognize that my recent emails have detailed the harder parts of our life as we contend with the constant barrage of trials associated with cancer treatment. I fear, however, that I may have misled you little. It is no lie that the negatives we deal with on a daily basis related to Aria and the oncology clinic in general are massive. Sometimes they are overwhelming and daunting. Sometimes they feel all encompassing but I know they are not. It is exactly like being on mountain and suddenly finding yourself thinking of nothing but the mountain; how high it is, how steep, how monotonous, how lonely, how tiring, how difficult, how seemingly barren, how harsh and brutal. Then like magic, your eye catches a glimpse of a single rare mountain flower in full bloom. It's color and magnificence envelope your soul against this haunting landscape. You take a long look at this wonder-- neither disturb it or touch it. You let it be and you let in its essence. Suddenly, you are restored and somehow the mountain is less harsh, less lonely, and less difficult. You are reminded once again that it is so often the little things of life that have the greatest affect.
And so it is with me. Upon this mountain I call cancer, we have so much magic-- so many brilliant little moments. In the clinic on Tuesday surrounded by the brutality of raging disease, Aria and Rianna brought a smile to a mother filled with worry, not able to play, wanting to but not able. My girls were lions on a savanna and I was talking to this mother as they were growling at her and taking little lion swipes at her legs. I didn't want them to be too intrusive of her space, knowing that it's hard not to be playful around playful kids. It is the ultimate icky feeling. So as we were chatting I said, "Excuse me a minute. Lions! Oh lions! How about a juuuuiccccy......ZEBRA LEG!" and from my imaginary pocket I pulled out a beefy bloody zebra leg that those lions dove for and chomped on a while. She looked at me with a combination of utter amazement, amusement and confusion. I received a note from her later telling me how much she loved that interaction and I have to say, I was relieved. There’s nothing like being weird and then being even weirder and feeling completely self-conscious about it!
Yesterday, Aria was able to go to school and had an absolute blast. When I went to pick her up, she was so jazzed that she was, literally, running circles around my girlfriend, Shelly, and I. I haven't seen Aria do this in over a year. She hasn't had that much energy in all this time. Her joy was positively bursting from within her. She was giggling and I swear I thought I saw glimpses of glitter flying from her skin. The spirit of my Fairy Aria was in full form yesterday.
When Reo got home from school, Doc got all the kids ready to go outside and play on the frozen snow. We've had periods of thaw and freeze so the snow is hard-packed and easy to tromp around on. I stayed behind to clean up the library bathroom that Rianna had managed to flood. We hate this bathroom so any additional damage/demolition that we do now will save us time later. No worries! I was in the library watching the kids outside. Their bright snowsuits against the white canvas of our pasture was pure brillaince. Dazzling images of their beautiful bodies and spirits racing and soaring over the snow, running and frolicking with the dogs. Aria ran full steam to the far corner of our pasture and stood there in full glory and howled like a wolf! Rianna ran to join her and so did Reo. The three of them racing back to our yard running, leaping, laughing enjoying every single moment. The beauty of watching their childhood before my very eyes this way somehow makes up for so much hardship and horror. I don't know how that is possible but it is. Perhaps it is a deeper appreciation. Perhaps it is the sense that we have only these moments to cherish so they are best not to be ignored. Perhaps it is finally learning to grasp being present. Perhaps it is forgetting the mountain of cancer and enjoying this magical field of sunshine and play. Perhaps it is all of the above and none of it too.
Yesterday Reo brought home his progress report and he is doing exceptionally well. At this midpoint, he has already reached the year's end goal for his reading and he remains right on track for math and science. I just couldn't be more proud of this little guy. I am so proud and so in awe of him that a few weeks ago I noticed advertised in our local paper that Spokane was looking for outstanding children (K-12) to honor with a 'Chase Youth Award." I have no idea what this award actually is other than a means to recognize the children in our community that are working to make it a better place by their creativity, their courage and their resourcefulness. I nominated Reo and his nomination has been accepted and we'll see what happens at the award ceremony in March. I've included a copy of the nomination letter I submitted. I think this experience will be wonderful for the kids. They'll be able to hear stories about all kinds of kids from all over the Spokane area and I think this is a wonderful way to build a genuine sense of community. The fact that I had the extra energy and thought to go through with this tells me that I'm healing. It tells me that I'm better, that we're all better in spite of the fact that things still get really difficult. We are well.
Rianna continues to amaze me. She is starting to talk up a storm. It is still a lot of 2 year old alien speak that only the mother ship can decipher but I sense the language emerging. She had her well baby check Tuesday afternoon and she is just a perfect little person. She is high energy, inquisitive, the master annoyer and copy-cat. She is pure comic relief that is grounding and real. I am so proud of her.
The mountain is looming and large but the delicacies of Life are sustaining and uplifting. I carry on step by step because of it. Sometimes I see only the mountain, but then I catch a glimpse and I am restored and anew. ~j
Nomination Letter for the Chase Youth Award for Courage:
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
Thursday, November 19, 2009
Aria's January Spinal Tap
January 26, 2009
Subject: Aria’s January Spinal Tap
Last week Monday and Tuesday January 19 and 20, 2009 found the Layton family in the clinic. Monday was the day following our wonderful time on the mountains skiing and we went into clinic still feeling quite high about it. We were savoring the day and all the wonderful moments it brought. It was a busy clinic and the playroom was filled with familiar faces. People were in good spirits and there was brightness in the air. The flow of clinic was nice and easy.
Aria's labs were draw immediately and we contented ourselves playing with all kinds of things. We were also taking turns chasing Rianna who thought it ever so hilarious to run up and down the halls. I was grateful that the tone of the clinic was conducive for this kind of play. It isn’t always this way. There was no one that I saw in need of critical care per se. No one was walking around attached to an IV pole. The nurses were light and jovial and the sober mood I know so well was minimal.
Dr. Trobaugh wanted to examine Aria and review her lab results, which is standard protocol before any procedure. For almost an entire year, Aria had been receiving her spinal taps on Friday, which meant that we checked in first thing in the morning, had her labs drawn, waited for the results, met with Dr. Trobaugh and then she was seen for the spinal tap procedure, followed by more waiting for her vincristine, which was administered via her port usually within 30 minutes of her procedure. All in all Fridays have been exceptionally long days usually lasting 6 hours or more. Because of Aria's hospitalizations in recent months, the schedule changed. Her spinal taps are now on Tuesday mornings and so the Monday before Aria's labs are drawn and she is examined. Although this means that we have to go clinic 2 days in a row, it has been rather nice to break up the time this way. We know so many people and the environment is so familiar that it has become a sense of community and a welcomed one at that.
In the interim of waiting for Aria's lab results, I was showing the Feb/March issue of MaryJanesFarm magazine, which has a beautiful feature of yours truly and Aria. MaryJane Butters has been very generous to me this past year and this feature is such a gift. I am eternally grateful and as cool as it is to be in a magazine, I have to say that the many other articles and stories that fill these pages are every bit worth your while. The magazine is dedicated to bees and brings to our attention the plight of these necessary pollinators.
As I was showing it off to a few trusted folks, there was a woman in the playroom with her 2 boys. I have seen her only once before and both times now she has been stoic and a little blank. I know that look well and I've wondered about her. She was passing the magazine back to me when she looked at me and asked, "Do you mind?" I was amazed and replied, "Of course not!" She read the page and everything about her was silent. She looked up at me handing the magazine over when I sensed a sadness about her. I know her sorrow. Maybe I reading into it but I don't think so. She said to me, "That's so right on. You really are a good writer." It was such an overwhelming moment for me. This kind of generosity...I'm not really sure how to handle it. I thanked her. She nodded and asked how long we'd been coming. I told her a year and she smiled. "Leukemia?" I nodded and I asked about her and her son. She told me that her 8 year old son was diagnosed 8 months ago with lymphoma. She said it had been really hard and it was harder because, "My insurance through work isn't very good." I didn't get a chance to ask her any more because it was our turn to meet with Dr. Trobaugh. Instead, I thanked her again and said, "I'm sure I'll see you soon." She smiled and I left wondering about her, about insurance and how a catastrophic illness such as cancer can obliterate every aspect of a person's life.
When we had our meeting with Dr. Trobaugh it was so obvious to me that Doc and I were still riding the high of our skiing adventure. We were relishing Aria's wellness. She was just incredible and we were talking it up. I found myself saying things like, "She is as well as she was before she got sick. It has been so great to see her like this. It makes me so happy to see her doing so well. We are rejoicing to have this slice of normal slowly coming back to us." I wonder now as I'm writing this a week later if I was breathless as I was speaking. I wonder if there was a hint of desperation in my voice. I wonder if my smile mingled with a look of fear. I wonder if in between everything I was saying I was shouting simultaneously, "Don't you dare rain on this parade! Don't you even think of telling us anything bad! Don't think about killing this buzz. Don't do it! Please don't do it!" I don't want that voice to be there. I don't want to hear it screaming the same time I'm trying to enjoy the moment. I hate that voice. But there it is, nevertheless.
Dr. Trobaugh listened to our tales. She smiled and was genuinely amused. She entertained Reo and giggled at Rianna. She was thoroughly present to our moment and then like magic, the moment was over. I remember taking a deep breath and just asking Dr. Trobaugh, "So what's the word?" My attitude was definitely "let's just get this over with, shall we?" Aria's ANC had dropped to 960 and 12 days before it was 1516.
She began, "So, yeah, ok. So her ANC is dropping and I'm kinda worried about it. When she trends downward, she tends to tank. So I want to talk to you guys about maybe changing her Septra (antibiotic) because I think she might be really sensitive to it."
At this point all of her words became this weird whirling whushing sound that reminded me of an old time fan in a historic building in some nearly deserted small town. Not only that but I was aware that the lights seemed dimmer. I was processing. I thought I had understood the reason for Aria's Septra, which she takes twice a day on Saturdays and Sundays. I thought it was a preventive kind of thing so I couldn't figure out how her ANC had anything to do with it. What does the antibiotic have to do with her counts dropping and not only that but I thought the goal was to keep Aria's ANC between 500 and 1500. An ANC of 960 sounded perfect! I was gathering my thoughts when Aria chimes in, "Dada, I need to go pee!" Suddenly he was taking her but wanting to ask Dr. Trobaugh some questions. He looked a little stunned and wanted to stay focused at the same time I had questions too. We were both moving and staying put. It was a bizarre dance. Meanwhile, Aria had climbed off the exam table and headed out the door followed by Rianna.
Doc stood up with them but didn't want to leave the room. I wasn't able to move and asked that he take the girls while I ask a question and then we'd switch. He nodded and cajoled Rianna to follow him while I stayed behind to ask Dr. Trobaugh what this all meant. She explained that a side effect of the Septra is a decrease in counts. So looking at the septra in combination with the chemo that is injected into her spinal fluid every 3 months (methotrexate) which is also a chemo that she takes in pill form on Fridays as well as the monthly vincristine and the steroids she takes 5 days a month plus the daily chemo pill (6MP) simply does a number on her counts. That's what the chemo is supposed to do. It is supposed to suppress her immune system but the problem is that Aria is very sensitive to the medicine, so that in this combination it has caused her to get so suppressed that she's been hospitalized every 2 months. Dr. Trobaugh wants to see if changing the Septra can make her ANC more stable and keep her out of the hospital.
I'm still processing this while Dr. Trobaugh is explaining it to me. In the moment with her, all I understood was, "Side effect of Septra is lower counts." The rest I just wrote was what I've been processing this past week. I also asked her before I took over for Doc why she was worried about an ANC of 960 when I thought it was roughly right where we want to be. She agreed that an ANC of 960 is great but that she wants to see a stable ANC. In other words, if Aria had presented with an ANC of 1400 when just 12 days before it was 1516, then there wouldn't be any cause for concern. So a 500+ drop in her counts in roughly 2 weeks is significant because on this trajectory, in another 2 weeks Aria's ANC would be below 500 which means she becomes incredibly susceptible to whatever is out there and would more than likely wind up in the hospital. This is exactly what's been happening for months. Aria has not had a stable ANC yet. So this is why we dial up her medication and then down and why we may have to try different medications when we can.
Sigh. I got it. I understood. "Shit!" I muttered to myself as I went to the bathroom. I was so distracted. My buzz was so killed. Doc stayed and helped me with the girls. We needed something to do as we processed this. In the grand scheme of things, it is no big deal. Really. It is what it is. The bummer is that we just wanted to ride our buzz from the day before just a little longer and this news was outside the realm of Aria doing as well as we thought she was.
She is doing well, but.....She's feeling great, but.....Her energy is awesome, but...She just went skiing for heaven's sake, but...She's in remission, but.... That's the bummer. That's the stuff that blindsides and takes a minute or two to digest. It's really hard and try as I may to be accepting of whatever comes, it is so painful and so raw still. I wouldn't be honest if I didn't admit that this is the kind of thing that makes me cry. I want her to enjoy the wellness that we sense and there are these moments where that seems stripped away even if it is temporary. I have this voice that scolds me, "Yeah, yeah, yeah, stop yer bitchin' and get on with it." It is a hard thing to hear but it is also a welcomed sentiment. Although I need to acknowledge my feelings and give myself permission to feel them, this particular voice keeps me from getting stuck in an emotional whirlpool.
Doc stayed with the girls and I in the bathroom. We just looked at each other and sighed. I remember him saying something, "Oh man! I didn't see this coming at all." I was completely choked up at that point and needed an extra moment to compose myself. We returned to the examination room and Doc started asking questions. Dr. Trobaugh had already mentioned an alternative antibiotic but I didn't hear her the first time. I can't tell you the name. I have no idea. At first I heard, "Inhaled. She'll need a breathing treatment beforehand. I won't be able to be in the room with her because I'm still nursing with Rianna. Risk of breath-through pneumonia." In my head I hear, "Whoa! break through pneumonia!? What is going on here?"
I stop the conversation. "I'm sorry, Dr. Trobaugh. Forgive me Doc. What are we talking about here?" I hadn't realized there was a second part to this particular buzz kill. She smiled and I took a deep breath. She acknowledged that Aria really is doing as well as we think she is. She reassured us that this isn't something that we need to decide today. This isn't a change we need to make immediately. She said, "I just wanted to mention it. I wanted to start a dialogue about it in case it is something you guys want to explore in another month or two or never. I just want to discuss it." This is why Dr. Trobaugh is so wonderful. She reads us so well and her reassurance is warm and soothing. It really is the perfect salve. Exercising her seemingly limitless supply of patience, she began again. There is an alternative antibiotic that many kids who are allergic to Septra automatically have to take. It isn't the top line like Septra but it still does the trick. The negatives are that it is more effective when inhaled and because it has to be inhaled Aria would receive a breathing treatment beforehand. I can't remember but I think it is only once a month. The real risk is what is called break-through pneumonia, which is what people with HIV/Aids contend with. This sounded absolutely terrifying to me. I remember looking over my shoulder at Doc in disbelief.
It was here that we expressed that we understood the information, risks, advantages and the like. However Doc said, "I appreciate this information, but Dr. Trobaugh, Aria is finally feeling well. She's been back at school. We are doing great and I just don't want to change anything yet." It was here that I added, "I feel like we're just turning the corner of months of a revolving door kind of illness. We are finally all well. I understand that Aria has not had a stable ANC and I understand that the Septra may be a culprit but there have also been other factors, like illness, that we've had to deal with too. Would it be possible to monitor her counts every week for a while instead of every 2 weeks. This way we can see the trend happening that much faster and maybe nip it sooner." Dr. Trobaugh was in full agreement and I think she understood our reluctance to not want to change anything right now. In fact, I'm certain of it.
We reviewed all of her medications and the plan for the next month. With a "see you in the morning!" we were off. On our way home Doc asked me if his saying "let's not change anything right now" was too, too. I cut him off. I knew he was going to grapple with and need reassurance about the fact that he was not questioning but maybe challenging Dr. Trobaugh's recommendations as a physician himself. Doc, because he's a doctor, knows and understands so much more than the rest of us. I know he was concerned about how he was coming across to her. He didn't want to give the impression that he questioned her judgment. He doesn't. He trusts her completely. He simply didn't want to get entangled in the moment of shock and change something that really doesn't need to be changed right away. I remarked that Doc keeps a level head. "Honey, you are the grounding force. You gave the situation some pause when it would have been so easy to run on the energy of being stunned and disappointed." He was relieved. I continued, "I might also add, that you are a noble gentleman and everything you said and the manner in which you said it was gentle and respectful." I thoroughly believe Dr. Trobaugh appreciates the clarity that Doc brings to the discussion. I don't share his clarity in the moment very often. I don't understand medicine the way he does. So I hear Dr. Trobaugh say, "I'm worried and I think we need to change.." and that's it for me. I'm ready to change. I'm ready to do a.n.y.t.h.i.n.g she tells me. Doc, on the other hand, helps remind me that we can take a day to think about it. We can take an extra few minutes to think about it and be certain we understand. He reminds me that the more I understand, the less I have to fear.
We had a wonderful day when we got home. We celebrated Martin Luther King and for me I remembered writing about him last year. I had read his autobiography and was stunned by his courage and tenacity. I knew then that I would need some of his Spirit and I have kept that thought and his image close.
Before we knew it, it was Tuesday morning 7am and time to head back to clinic. When we arrived it was quiet. There were 2 mothers with their kids I had never met before. They were talking about having just been released from the inpatient unit and were discussing issues related to insurance. They were both expressing feelings of financial stress. This, on top of everything else is something I am so grateful that we don't have to contend with and yet I am so much more aware of the sickness called our health care system that is so pervasive.
We introduced ourselves and shared summaries of our stories. They were calling themselves 'the freshman class' since they are brand new to the outpatient world. I found this hilarious and appreciated so deeply their sense of humor. I found it hard to believe that we're probably considered sophmores and maybe even juniors in the process. There was a little girl, 21/2 years old, who was diagnosed with ALL a few months ago. She spent 6 weeks in the hospital! I can't imagine and yet obviously I can. She's doing really well though and she was energetic, full of life and just pure joy. The other little one was just 15 months old and was diagnosed with neuroblastoma. He has 6 tumors throughout his body and his mom said that he is doing so much better than he was just 6 weeks ago when they discovered his cancer. His journey is going to be completely unfamiliar to me. He'll have intensive chemotherapy for the next few months along with radiation and then a bone marrow transplant in the next several months. They'll have to live in Seattle for about 4 months. It just sounds grueling and brutal and sort of puts our situation in a very different place. I actually have to fight not comparing in that way because it is an emotionally conflicting thing to do. On one hand what we're dealing with compared to most people is awful and it makes me so sad and yet within the world of pediatric cancer, we're doing really, really well and I'm overwhelmed with gratitude. Comparing is a slippery slope but so easy to visit and when I find myself doing that I think about something Doc said. "Honey, it's all relative. There's Horrible, Really bad and Bad. We're doing great in the bad part of the spectrum." Isn't that perfect? Still, their situation sounds horrible in my book and I found myself thinking about 'moments'--celebrating and cherishing moments with each other. It is all we have.
They were lovely women and I look forward to running into them frequently. One of the mothers told me that because her daughter spent more than 30 days in the hospital that they automatically qualify for Medi-caid, "which is a God-send" she said. "I have no idea what we'd do without that," she added. The other mother told us that she applied for assistance but because of their income did not qualify. She said that they are only now finding out how flimsy their insurance really is. They are facing medical bills, I'm guessing, that will probably be in the hundreds of thousands of dollars. It is a frightening piece that just sickens me. I tell you, I'll be watching very closely what's happening in the world of our health care.
Aria's spinal tap went off without a hitch. Doc was with her the entire time as he has been since the beginning. I was able to stand in the waiting area, with my hand on my heart, and watch Barack Obama become our President. I was one of millions of people the world over who was in tears and thrilled about the tone of hope and change. Reo watched with me and it brought such joy to an already intense situation. When Aria was finished, which seemed like a blink of an eye, she was ready to EAT! I went to the Ronald McDonald room to make her some toast and butter. "Mom, I like the bread just kind of that light yellow color, not brown and I like the butter melted in." This order, by the way, of toast and butter gets really hard when she's on steroids. It goes something like this: "Hey, mom, you know that bread and butter? Mom, mom,mom. That bread? You know the kind I like? Well, I don't like it brown and crunchy 'cuz it hurts my teeth, but I like it yellow not all the way white. Mom, mom...you know that bread? I like it kind of that yellow color without all the seeds. You know? And the butter, I like it melted in not out but in. I sometimes like to see it but sometimes I don't...just melted and just right." I swear, when she gets into this mode, I just say a quick Hail Mary and hope for the best!
Anyway, I was in the Ronald McDonald room making her some toast and butter praying it was "right" when a woman I've seen for the last year came in. I've always wondered about her and have always wanted to meet her but the opportunity has never come up. I always thought that since I saw her so often that her son must have a wicked kind of cancer. She always appeared to me to be a 'seasoned pro' and I admired her. I finally had an opportunity to introduce myself. We were able to laugh and acknowledge how long we'd been noticing one another but had never had a chance to formally meet. I asked about her. She told me that her son had ALL and went through 3 1/2 years of treatment. 9 months later he relapsed. "When they told me that a bone marrow transplant was going to be his best option I knew it was bad," she said. I listened feeling heart –broken. "They couldn't find a match," she continued, "so we're doing another 31/2years of chemo. We only have 37 more weeks to go."
Sometimes I just want to scream, "I DON'T WANT TO BE A PART OF THE WORLD OF PEDIATRIC CANCER!" and yet, I am and I accept that I am. Maybe it's why I don't put blinders on or put my fingers in my ears and sing, "la-la-la-la-la-la" as a way of trying to block it all out. The other day I had this image of me being thrown this wicked football and I had a choice to make. Either I'd lie down and be trampled upon or I'd muscle up, charge through gritting my teeth the entire way toward the goal. I think you can guess what I've chosen to do. I don't even like football!
I can't remember what I said to her, if I said anything. I remember just wanting to look deeply into her eyes. I remember that we both sighed together once again visiting, "What are ya gonna do?" I meant it when I said, "It is so nice to finally meet you!"
When I reached the playroom with Aria's 'right' toast there were some new faces. I met a woman with her 6 year old daughter who, she told me, had ALL and finished her treatment, I think she said, a year ago, although it could have been more. I remember just being so thrilled to meet her and to see her daughter so far out from the world of treatment. This encounter was the first of its kind. They were there for their annual check-up. The mother was curious about Aria and asked where we were in our treatment and she was so encouraging and so optimistic. "You will get through it, you know. She'll be fine. But, it is so hard! Oh!" she rubbed her face and eyes as if remembering and suddenly feeling completely exhausted. She looked at me again and said, "Aren't those steroids just great fun?" We laughed and I replied, "Ah, no! Actually, I can't even joke about them yet. That part is really hard. I know it is only 5 days but the change that happens in just 5 days is so incredible." She looked at me with such warmth and compassion and said, "Oh, I know. Boy, do I ever know!" She does and it is comforting. This was the extent of our conversation but I tell you it was in such stark contrast to the one I had had only minutes before and I think depicts so clearly the range that can be experienced in just a matter of minutes.
Aria received her vincristine and we scheduled her follow up appointments for the next 3 months and then were on our way. Already it has been a week and tomorrow we return for another lab check. Aria will probably not go to school as a safety precaution. We're guessing that her counts are dropping and don't want to expose her unnecessarily, although its hard because 'she's doing so well.'
We've had a wonderful week at home. Aria handled her steroids fairly well although toward the end it's like living with a ticking time bomb and I have no idea what's going to set her off. Her energy was considerably lower but her spirit was high and she was playful and bright.
I'm not really hoping for stable counts tomorrow. They're going to be what they are and I'll have to accept the results and deal with them. My thoughts this evening as I write are instead of grace. I desire the grace to accept whatever comes, to ride the swells with peace, trust and balance, to recognize the suffering in others, to share what I can of myself, and to earn a welcomed view into the lives of the extraordinary people I meet. It is grace I seek. ~j
Subject: Aria’s January Spinal Tap
Last week Monday and Tuesday January 19 and 20, 2009 found the Layton family in the clinic. Monday was the day following our wonderful time on the mountains skiing and we went into clinic still feeling quite high about it. We were savoring the day and all the wonderful moments it brought. It was a busy clinic and the playroom was filled with familiar faces. People were in good spirits and there was brightness in the air. The flow of clinic was nice and easy.
Aria's labs were draw immediately and we contented ourselves playing with all kinds of things. We were also taking turns chasing Rianna who thought it ever so hilarious to run up and down the halls. I was grateful that the tone of the clinic was conducive for this kind of play. It isn’t always this way. There was no one that I saw in need of critical care per se. No one was walking around attached to an IV pole. The nurses were light and jovial and the sober mood I know so well was minimal.
Dr. Trobaugh wanted to examine Aria and review her lab results, which is standard protocol before any procedure. For almost an entire year, Aria had been receiving her spinal taps on Friday, which meant that we checked in first thing in the morning, had her labs drawn, waited for the results, met with Dr. Trobaugh and then she was seen for the spinal tap procedure, followed by more waiting for her vincristine, which was administered via her port usually within 30 minutes of her procedure. All in all Fridays have been exceptionally long days usually lasting 6 hours or more. Because of Aria's hospitalizations in recent months, the schedule changed. Her spinal taps are now on Tuesday mornings and so the Monday before Aria's labs are drawn and she is examined. Although this means that we have to go clinic 2 days in a row, it has been rather nice to break up the time this way. We know so many people and the environment is so familiar that it has become a sense of community and a welcomed one at that.
In the interim of waiting for Aria's lab results, I was showing the Feb/March issue of MaryJanesFarm magazine, which has a beautiful feature of yours truly and Aria. MaryJane Butters has been very generous to me this past year and this feature is such a gift. I am eternally grateful and as cool as it is to be in a magazine, I have to say that the many other articles and stories that fill these pages are every bit worth your while. The magazine is dedicated to bees and brings to our attention the plight of these necessary pollinators.
As I was showing it off to a few trusted folks, there was a woman in the playroom with her 2 boys. I have seen her only once before and both times now she has been stoic and a little blank. I know that look well and I've wondered about her. She was passing the magazine back to me when she looked at me and asked, "Do you mind?" I was amazed and replied, "Of course not!" She read the page and everything about her was silent. She looked up at me handing the magazine over when I sensed a sadness about her. I know her sorrow. Maybe I reading into it but I don't think so. She said to me, "That's so right on. You really are a good writer." It was such an overwhelming moment for me. This kind of generosity...I'm not really sure how to handle it. I thanked her. She nodded and asked how long we'd been coming. I told her a year and she smiled. "Leukemia?" I nodded and I asked about her and her son. She told me that her 8 year old son was diagnosed 8 months ago with lymphoma. She said it had been really hard and it was harder because, "My insurance through work isn't very good." I didn't get a chance to ask her any more because it was our turn to meet with Dr. Trobaugh. Instead, I thanked her again and said, "I'm sure I'll see you soon." She smiled and I left wondering about her, about insurance and how a catastrophic illness such as cancer can obliterate every aspect of a person's life.
When we had our meeting with Dr. Trobaugh it was so obvious to me that Doc and I were still riding the high of our skiing adventure. We were relishing Aria's wellness. She was just incredible and we were talking it up. I found myself saying things like, "She is as well as she was before she got sick. It has been so great to see her like this. It makes me so happy to see her doing so well. We are rejoicing to have this slice of normal slowly coming back to us." I wonder now as I'm writing this a week later if I was breathless as I was speaking. I wonder if there was a hint of desperation in my voice. I wonder if my smile mingled with a look of fear. I wonder if in between everything I was saying I was shouting simultaneously, "Don't you dare rain on this parade! Don't you even think of telling us anything bad! Don't think about killing this buzz. Don't do it! Please don't do it!" I don't want that voice to be there. I don't want to hear it screaming the same time I'm trying to enjoy the moment. I hate that voice. But there it is, nevertheless.
Dr. Trobaugh listened to our tales. She smiled and was genuinely amused. She entertained Reo and giggled at Rianna. She was thoroughly present to our moment and then like magic, the moment was over. I remember taking a deep breath and just asking Dr. Trobaugh, "So what's the word?" My attitude was definitely "let's just get this over with, shall we?" Aria's ANC had dropped to 960 and 12 days before it was 1516.
She began, "So, yeah, ok. So her ANC is dropping and I'm kinda worried about it. When she trends downward, she tends to tank. So I want to talk to you guys about maybe changing her Septra (antibiotic) because I think she might be really sensitive to it."
At this point all of her words became this weird whirling whushing sound that reminded me of an old time fan in a historic building in some nearly deserted small town. Not only that but I was aware that the lights seemed dimmer. I was processing. I thought I had understood the reason for Aria's Septra, which she takes twice a day on Saturdays and Sundays. I thought it was a preventive kind of thing so I couldn't figure out how her ANC had anything to do with it. What does the antibiotic have to do with her counts dropping and not only that but I thought the goal was to keep Aria's ANC between 500 and 1500. An ANC of 960 sounded perfect! I was gathering my thoughts when Aria chimes in, "Dada, I need to go pee!" Suddenly he was taking her but wanting to ask Dr. Trobaugh some questions. He looked a little stunned and wanted to stay focused at the same time I had questions too. We were both moving and staying put. It was a bizarre dance. Meanwhile, Aria had climbed off the exam table and headed out the door followed by Rianna.
Doc stood up with them but didn't want to leave the room. I wasn't able to move and asked that he take the girls while I ask a question and then we'd switch. He nodded and cajoled Rianna to follow him while I stayed behind to ask Dr. Trobaugh what this all meant. She explained that a side effect of the Septra is a decrease in counts. So looking at the septra in combination with the chemo that is injected into her spinal fluid every 3 months (methotrexate) which is also a chemo that she takes in pill form on Fridays as well as the monthly vincristine and the steroids she takes 5 days a month plus the daily chemo pill (6MP) simply does a number on her counts. That's what the chemo is supposed to do. It is supposed to suppress her immune system but the problem is that Aria is very sensitive to the medicine, so that in this combination it has caused her to get so suppressed that she's been hospitalized every 2 months. Dr. Trobaugh wants to see if changing the Septra can make her ANC more stable and keep her out of the hospital.
I'm still processing this while Dr. Trobaugh is explaining it to me. In the moment with her, all I understood was, "Side effect of Septra is lower counts." The rest I just wrote was what I've been processing this past week. I also asked her before I took over for Doc why she was worried about an ANC of 960 when I thought it was roughly right where we want to be. She agreed that an ANC of 960 is great but that she wants to see a stable ANC. In other words, if Aria had presented with an ANC of 1400 when just 12 days before it was 1516, then there wouldn't be any cause for concern. So a 500+ drop in her counts in roughly 2 weeks is significant because on this trajectory, in another 2 weeks Aria's ANC would be below 500 which means she becomes incredibly susceptible to whatever is out there and would more than likely wind up in the hospital. This is exactly what's been happening for months. Aria has not had a stable ANC yet. So this is why we dial up her medication and then down and why we may have to try different medications when we can.
Sigh. I got it. I understood. "Shit!" I muttered to myself as I went to the bathroom. I was so distracted. My buzz was so killed. Doc stayed and helped me with the girls. We needed something to do as we processed this. In the grand scheme of things, it is no big deal. Really. It is what it is. The bummer is that we just wanted to ride our buzz from the day before just a little longer and this news was outside the realm of Aria doing as well as we thought she was.
She is doing well, but.....She's feeling great, but.....Her energy is awesome, but...She just went skiing for heaven's sake, but...She's in remission, but.... That's the bummer. That's the stuff that blindsides and takes a minute or two to digest. It's really hard and try as I may to be accepting of whatever comes, it is so painful and so raw still. I wouldn't be honest if I didn't admit that this is the kind of thing that makes me cry. I want her to enjoy the wellness that we sense and there are these moments where that seems stripped away even if it is temporary. I have this voice that scolds me, "Yeah, yeah, yeah, stop yer bitchin' and get on with it." It is a hard thing to hear but it is also a welcomed sentiment. Although I need to acknowledge my feelings and give myself permission to feel them, this particular voice keeps me from getting stuck in an emotional whirlpool.
Doc stayed with the girls and I in the bathroom. We just looked at each other and sighed. I remember him saying something, "Oh man! I didn't see this coming at all." I was completely choked up at that point and needed an extra moment to compose myself. We returned to the examination room and Doc started asking questions. Dr. Trobaugh had already mentioned an alternative antibiotic but I didn't hear her the first time. I can't tell you the name. I have no idea. At first I heard, "Inhaled. She'll need a breathing treatment beforehand. I won't be able to be in the room with her because I'm still nursing with Rianna. Risk of breath-through pneumonia." In my head I hear, "Whoa! break through pneumonia!? What is going on here?"
I stop the conversation. "I'm sorry, Dr. Trobaugh. Forgive me Doc. What are we talking about here?" I hadn't realized there was a second part to this particular buzz kill. She smiled and I took a deep breath. She acknowledged that Aria really is doing as well as we think she is. She reassured us that this isn't something that we need to decide today. This isn't a change we need to make immediately. She said, "I just wanted to mention it. I wanted to start a dialogue about it in case it is something you guys want to explore in another month or two or never. I just want to discuss it." This is why Dr. Trobaugh is so wonderful. She reads us so well and her reassurance is warm and soothing. It really is the perfect salve. Exercising her seemingly limitless supply of patience, she began again. There is an alternative antibiotic that many kids who are allergic to Septra automatically have to take. It isn't the top line like Septra but it still does the trick. The negatives are that it is more effective when inhaled and because it has to be inhaled Aria would receive a breathing treatment beforehand. I can't remember but I think it is only once a month. The real risk is what is called break-through pneumonia, which is what people with HIV/Aids contend with. This sounded absolutely terrifying to me. I remember looking over my shoulder at Doc in disbelief.
It was here that we expressed that we understood the information, risks, advantages and the like. However Doc said, "I appreciate this information, but Dr. Trobaugh, Aria is finally feeling well. She's been back at school. We are doing great and I just don't want to change anything yet." It was here that I added, "I feel like we're just turning the corner of months of a revolving door kind of illness. We are finally all well. I understand that Aria has not had a stable ANC and I understand that the Septra may be a culprit but there have also been other factors, like illness, that we've had to deal with too. Would it be possible to monitor her counts every week for a while instead of every 2 weeks. This way we can see the trend happening that much faster and maybe nip it sooner." Dr. Trobaugh was in full agreement and I think she understood our reluctance to not want to change anything right now. In fact, I'm certain of it.
We reviewed all of her medications and the plan for the next month. With a "see you in the morning!" we were off. On our way home Doc asked me if his saying "let's not change anything right now" was too, too. I cut him off. I knew he was going to grapple with and need reassurance about the fact that he was not questioning but maybe challenging Dr. Trobaugh's recommendations as a physician himself. Doc, because he's a doctor, knows and understands so much more than the rest of us. I know he was concerned about how he was coming across to her. He didn't want to give the impression that he questioned her judgment. He doesn't. He trusts her completely. He simply didn't want to get entangled in the moment of shock and change something that really doesn't need to be changed right away. I remarked that Doc keeps a level head. "Honey, you are the grounding force. You gave the situation some pause when it would have been so easy to run on the energy of being stunned and disappointed." He was relieved. I continued, "I might also add, that you are a noble gentleman and everything you said and the manner in which you said it was gentle and respectful." I thoroughly believe Dr. Trobaugh appreciates the clarity that Doc brings to the discussion. I don't share his clarity in the moment very often. I don't understand medicine the way he does. So I hear Dr. Trobaugh say, "I'm worried and I think we need to change.." and that's it for me. I'm ready to change. I'm ready to do a.n.y.t.h.i.n.g she tells me. Doc, on the other hand, helps remind me that we can take a day to think about it. We can take an extra few minutes to think about it and be certain we understand. He reminds me that the more I understand, the less I have to fear.
We had a wonderful day when we got home. We celebrated Martin Luther King and for me I remembered writing about him last year. I had read his autobiography and was stunned by his courage and tenacity. I knew then that I would need some of his Spirit and I have kept that thought and his image close.
Before we knew it, it was Tuesday morning 7am and time to head back to clinic. When we arrived it was quiet. There were 2 mothers with their kids I had never met before. They were talking about having just been released from the inpatient unit and were discussing issues related to insurance. They were both expressing feelings of financial stress. This, on top of everything else is something I am so grateful that we don't have to contend with and yet I am so much more aware of the sickness called our health care system that is so pervasive.
We introduced ourselves and shared summaries of our stories. They were calling themselves 'the freshman class' since they are brand new to the outpatient world. I found this hilarious and appreciated so deeply their sense of humor. I found it hard to believe that we're probably considered sophmores and maybe even juniors in the process. There was a little girl, 21/2 years old, who was diagnosed with ALL a few months ago. She spent 6 weeks in the hospital! I can't imagine and yet obviously I can. She's doing really well though and she was energetic, full of life and just pure joy. The other little one was just 15 months old and was diagnosed with neuroblastoma. He has 6 tumors throughout his body and his mom said that he is doing so much better than he was just 6 weeks ago when they discovered his cancer. His journey is going to be completely unfamiliar to me. He'll have intensive chemotherapy for the next few months along with radiation and then a bone marrow transplant in the next several months. They'll have to live in Seattle for about 4 months. It just sounds grueling and brutal and sort of puts our situation in a very different place. I actually have to fight not comparing in that way because it is an emotionally conflicting thing to do. On one hand what we're dealing with compared to most people is awful and it makes me so sad and yet within the world of pediatric cancer, we're doing really, really well and I'm overwhelmed with gratitude. Comparing is a slippery slope but so easy to visit and when I find myself doing that I think about something Doc said. "Honey, it's all relative. There's Horrible, Really bad and Bad. We're doing great in the bad part of the spectrum." Isn't that perfect? Still, their situation sounds horrible in my book and I found myself thinking about 'moments'--celebrating and cherishing moments with each other. It is all we have.
They were lovely women and I look forward to running into them frequently. One of the mothers told me that because her daughter spent more than 30 days in the hospital that they automatically qualify for Medi-caid, "which is a God-send" she said. "I have no idea what we'd do without that," she added. The other mother told us that she applied for assistance but because of their income did not qualify. She said that they are only now finding out how flimsy their insurance really is. They are facing medical bills, I'm guessing, that will probably be in the hundreds of thousands of dollars. It is a frightening piece that just sickens me. I tell you, I'll be watching very closely what's happening in the world of our health care.
Aria's spinal tap went off without a hitch. Doc was with her the entire time as he has been since the beginning. I was able to stand in the waiting area, with my hand on my heart, and watch Barack Obama become our President. I was one of millions of people the world over who was in tears and thrilled about the tone of hope and change. Reo watched with me and it brought such joy to an already intense situation. When Aria was finished, which seemed like a blink of an eye, she was ready to EAT! I went to the Ronald McDonald room to make her some toast and butter. "Mom, I like the bread just kind of that light yellow color, not brown and I like the butter melted in." This order, by the way, of toast and butter gets really hard when she's on steroids. It goes something like this: "Hey, mom, you know that bread and butter? Mom, mom,mom. That bread? You know the kind I like? Well, I don't like it brown and crunchy 'cuz it hurts my teeth, but I like it yellow not all the way white. Mom, mom...you know that bread? I like it kind of that yellow color without all the seeds. You know? And the butter, I like it melted in not out but in. I sometimes like to see it but sometimes I don't...just melted and just right." I swear, when she gets into this mode, I just say a quick Hail Mary and hope for the best!
Anyway, I was in the Ronald McDonald room making her some toast and butter praying it was "right" when a woman I've seen for the last year came in. I've always wondered about her and have always wanted to meet her but the opportunity has never come up. I always thought that since I saw her so often that her son must have a wicked kind of cancer. She always appeared to me to be a 'seasoned pro' and I admired her. I finally had an opportunity to introduce myself. We were able to laugh and acknowledge how long we'd been noticing one another but had never had a chance to formally meet. I asked about her. She told me that her son had ALL and went through 3 1/2 years of treatment. 9 months later he relapsed. "When they told me that a bone marrow transplant was going to be his best option I knew it was bad," she said. I listened feeling heart –broken. "They couldn't find a match," she continued, "so we're doing another 31/2years of chemo. We only have 37 more weeks to go."
Sometimes I just want to scream, "I DON'T WANT TO BE A PART OF THE WORLD OF PEDIATRIC CANCER!" and yet, I am and I accept that I am. Maybe it's why I don't put blinders on or put my fingers in my ears and sing, "la-la-la-la-la-la" as a way of trying to block it all out. The other day I had this image of me being thrown this wicked football and I had a choice to make. Either I'd lie down and be trampled upon or I'd muscle up, charge through gritting my teeth the entire way toward the goal. I think you can guess what I've chosen to do. I don't even like football!
I can't remember what I said to her, if I said anything. I remember just wanting to look deeply into her eyes. I remember that we both sighed together once again visiting, "What are ya gonna do?" I meant it when I said, "It is so nice to finally meet you!"
When I reached the playroom with Aria's 'right' toast there were some new faces. I met a woman with her 6 year old daughter who, she told me, had ALL and finished her treatment, I think she said, a year ago, although it could have been more. I remember just being so thrilled to meet her and to see her daughter so far out from the world of treatment. This encounter was the first of its kind. They were there for their annual check-up. The mother was curious about Aria and asked where we were in our treatment and she was so encouraging and so optimistic. "You will get through it, you know. She'll be fine. But, it is so hard! Oh!" she rubbed her face and eyes as if remembering and suddenly feeling completely exhausted. She looked at me again and said, "Aren't those steroids just great fun?" We laughed and I replied, "Ah, no! Actually, I can't even joke about them yet. That part is really hard. I know it is only 5 days but the change that happens in just 5 days is so incredible." She looked at me with such warmth and compassion and said, "Oh, I know. Boy, do I ever know!" She does and it is comforting. This was the extent of our conversation but I tell you it was in such stark contrast to the one I had had only minutes before and I think depicts so clearly the range that can be experienced in just a matter of minutes.
Aria received her vincristine and we scheduled her follow up appointments for the next 3 months and then were on our way. Already it has been a week and tomorrow we return for another lab check. Aria will probably not go to school as a safety precaution. We're guessing that her counts are dropping and don't want to expose her unnecessarily, although its hard because 'she's doing so well.'
We've had a wonderful week at home. Aria handled her steroids fairly well although toward the end it's like living with a ticking time bomb and I have no idea what's going to set her off. Her energy was considerably lower but her spirit was high and she was playful and bright.
I'm not really hoping for stable counts tomorrow. They're going to be what they are and I'll have to accept the results and deal with them. My thoughts this evening as I write are instead of grace. I desire the grace to accept whatever comes, to ride the swells with peace, trust and balance, to recognize the suffering in others, to share what I can of myself, and to earn a welcomed view into the lives of the extraordinary people I meet. It is grace I seek. ~j
The place we're now in....
That's Reo. That itty-bitty person snow-plowing!
Aria learning balance. She's being pulled along by her instructor.
Aria and Rianna.
Rianna the snow eater!
January 20, 2009
Subject: The place we're now in..
January 20, 2009
Subject: The place we’re now in…
I thought I'd share with you a few pictures that capture Aria so completely as she is now. This first one was taken Saturday January 17, 2009 and the others on Sunday January 18, 2009 when we went skiing for the first time in 2 years. It was a phenomenal day with conditions that were nothing short of ideal; 34 degrees, sunny, crystal clear, no wind, and minimal crowds. It was heavenly! Reo had been skiing the weekend before with Doc and was eager to go again. When Doc saw what the weather was going to be like, he urged us all to go. Aria was thrilled and it was the first time in months that we were all well. I kept telling myself that it was time to let go a little and embrace her wellness. I know it is obvious that I would be hesitant, cautious and nervous and I don't begrudge those feelings but once again I found myself in a bit of battle between what my head knows and my heart feels. The two had yet another extraordinary conversation. This is how that went.
Head said things like, "Julia. Come on! She's awesome. Her energy is up. She's not going to be around a bunch of other kids in the play area. She's going to get tons of fresh air. It will be beautiful and she'll have a ball. Don't you want to give her a little piece of normal?"
Heart replied, "Of course I want her to feel normal. She is normal..er..well sort of. You know what I mean. Of course I want her to be outside, getting exercise and enjoy being alive. Of course I do...but..."
"But What?" Head interrupted impatiently. "But nothing! You have got to start putting away some of those feelings of yours and just start enjoying it all again. You have to do this for her. Put on that happy face and do it for her."
Heart is mildly irritated and beating a little faster, "Did you just tell me to put on a happy face? Are you suggesting that I fake it for her sake? Are you kidding me? That is such a bogus and insincere way of doing things and it really pisses me off!"
Head said defensively, "Whoa Nellie! Hold your horses there Missy! Whoa!!" pause. "Ah! Shoot! You're right...you're right."
I take a deep breath.
Head continued, "No, you're right. You gotta Live True. You gotta put on that happy face because you actually feel happy. You have to be honest and project that. All that is you is the best for her. I'm sorry I suggested that you compromise that."
"Hey, thanks" Heart said, "Listen. I know what you're saying is excellent advice. I'm just anxious, you know? What if she gets injured? What if she gets over tired? What if...."
"Hey Julia," Head whispered gently, "Hey, what's really bugging you? Really. What's the real hesitation? Come on. You can tell me."
I take another deep breath.
"Letting go.." Heart began, "I've had her in this protective cocoon for a year now, controlling as many variables as possible. Once I start letting her go again, there are more variables that I can't control. It's scary. It's change. I'm sorta used to this cozy cocoon despite the boredom and monotony of it. At least I know this existence. Loosening those reins is hard. That's all."
Head is quiet for moment. "Time is the greatest healer. In time it will be less scary and you'll be more willing to loosen those reins. In time, you and she will out-grown this cocoon you've designed together and you'll want the freedom awaiting you. In time...give yourself some time. This day is but one simple step. I have such a good sense about it that I think it would be foolish and sort of stagnating for you not to take it! You can't stay in the cocoon so this may be the perfect opportunity to make the first crack in it."
"Heart was suddenly filled with overwhelming joy and true happiness exclaiming, "Make the first crack....Man I love that! You are absolutely right! I'm so there! I'm all over it. I can't wait!"
This conversation didn't take that long but for some reason I kept replaying it. It started the day before we went skiing and were preparing clothes and boots and mittens and such. It was a bit of ride up and down; Doubt and relief. Doubt and relief. Anxiety and calm. Anxiety and calm. My head and heart, however, were friends. They were not battling each other, which was peaceful for my Spirit. It was a necessary back and forth and when Sunday morning rolled around I was jubilant.
As we were driving the 2 hours it took to get to the mountains, we listened to music, we sang, we laughed, we reminisced. We had a ball. It was almost impossible to believe that a year ago we were staying on the inpatient unit at Sacred Heart Hospital and here we were heading up to the slopes. We were filled with gratitude and awe. Doc and I talked of plans, which is something we haven't done for nearly a year. We stopped making plans almost all together. We certainly didn't plan anything too far into the future. Things were so dark and murky but now the view is clearer. We talked about our gardens. We talked about camping and fishing. We talked about trees and our orchard. We talked about so many things that once defined our normal day-to-day and were ripped from us a year ago. We couldn't be certain, then, that we'd have them back so we worked on letting them go and trusted that Life would show us what else was in store. To be with him discussing those things that we value so deeply was breath-taking and I found myself visualizing my gardens with such richness and simplicity. I imagined our tent and sleeping bags and could see so clearly all of us cuddled close. I saw us playing in the sunflower forest and picking and shelling peas. I saw the kids 'working' the farmstand and painting new signs that read: Eggs For Sale. What was so grand about all this wonderful day-dreaming was realizing that if none of it happens, we'll still be ok, for you see, I've already let it go. Having it back is bonus!
Watching the kids on the slopes was just an amazing thing! Reo had a 2 hour ski lesson with about 6 other kids. He still has the Frankenstein stand, legs wide in a snow plow and arms straight out. We could hear him gliding down the mountain, "WhoooooooA!" It was adorable. I had to walk away though. He looked so little against the backdrop of that big mountain. It is hard to believe he can be on his own that way but he can and there he went. It was wonderful! Toward the end of his lesson, we were watching for him come by on the chair lift. We waited and waited. Suddenly, there he was. ALONE! "What the hell?" I'm trying to be cool but suddenly I sense the blood rushing from my head. I think to myself, not certain that I'm not muttering this aloud either, "He has ridden that thing this entire time all by himself! Was he up there all alone crying? What was he thinking? What was he doing? Was he having fun?" Yeah, yeah, I begin to tell myself. "He's having fun. He's good. He's good." I can see him clearly now and I notice that he's holding on with both hands and he doesn't look relaxed. Did I mention that this chair lift ride is long? I'm giving the thumbs up and shouting, "Wait to go Reo!! wooooHoooo!" All of a sudden I hear him cry, "HHHHHEEEELLLLLPPPP!" His skis are tipped up and he's getting ready to get off the chair lift by himself. There is nothing I can do but watch. I go over to where he's going to slide off in the hopes of helping him to get out of the way in case he falls when I notice this kid who couldn't have been more than 10 or 12 years old. He had gotten off the chair just before Reo and heard his cry for help. He turned around, faced Reo and held his arms out to him as if he would catch him. Reo skied off the chair lift perfectly, right into this little boy’s arms. I was completely choked up and thanked this little kid. I also gave Reo a big hug but didn't stick around too long. I immediately encouraged him to ski over to his class, which he did. It was incredible.
Aria's lesson was an hour long and she was hooked up with a great guy. It was sort of like Grandpa teaching his granddaughter. At first we were a little skeptical because Aria specified that she wanted a girl teacher but when Aria said to Mike, her instructor, "Ok, now let me tell you why I have a port!" we knew everything would be fine. She went with him and had a blast. He was so gentle and sweet with her and she thoroughly enjoyed herself. Despite the great fun, it wasn't 5 minutes of driving down the mountain before she was sound asleep! She and Rianna napped for about 90 minutes. She was wiped.
Rianna contented herself the entire time flip-flopping in the snow and eating as much of it as her face would allow. She was busy and active but a pure delight.
As Doc was returning all the rental gear and I was packing up the car and giving the kids their picnic lunch I took a moment to take in my surroundings. I can't say that I truly paused and breathed it all in. For some reason, my breath kept coming up short. It was strange but I let it be what it was. I just kept marveling at what a different place we're in now. A year is a long time and a short time too. It’s funny how that can be possible. I remember telling myself to enjoy this moment. I did and we did. I memorized the color of the sky. I took a long look at the mountain and the skiers, like insects, whizzing down it. It was good and I, for maybe the first time really, felt like this day was separate from all the rest somehow. It was as if I was able to be in this day for what it was without any attachment to our yesterdays or our tomorrows. I was thankful for that little insight and will continue to carry it with me.
Driving off the mountain away from the exhilaration and excitement, I kept wondering if those feelings would be left there somewhere on the sparkling slopes or if I'd be able to take them with us. This is the change that IT requires. IT is the holding on to those emotions within my heart that are so good and healing while weaving those thoughts within my head that grind me back to a different reality of facing what I know is awaiting us. Real change can't just be an intellectual exercise that finds me telling myself over and over again "you're fine...this is going to be ok....you're good....hang on to these feelings...." I think I actually have to feel that and believe that in order for it to be true. It takes time and each time I ponder it I know I'm getting closer. It reminds me of something Doc said and actually as I think of it, I'm not certain he said it but it sure sounds like him. He said, "Change isn't about the end result. Change is about trying again and again and again to get to where you want to be. When you find yourself there, you've changed." I agree whole-heartedly. It is the process and it is being wide open and honest in my process that will get me to where I want to be. What has been so challenging is that this change was uninvited, painful and forced upon me. I do believe pain is one of the greatest channels for change but it is also brutal. It is finding balance with the beauty and brutality I see so clearly now. Every moment I think of it, every moment I stay true, every moment I shun the temptation to deny my true self brings me closer to this balance. The sun and the sparkle of the mountain is within me and I'm confident will radiate brighter through me with each passing day. It is my hope and it is my belief. ~j
Wednesday, September 16, 2009
January 15, 2009 Subject: thoughtful reflection….
January 15, 2009
Subject: thoughtful reflection…..
This is one of those halting photographs that was unintended but took our breath away once we loaded it on the computer. Aria was in the living room watching Doc put a hat on our snowman when he saw her and snapped this photo with his phone. He never expected to capture his reflection as a ghostly background to her image. This photograph mirrors with such truth their relationship and unique connection. Aria’s thoughtfulness and intensity is brilliantly displayed here and I think we all gain some insight into the simple beauty of this old soul.
Allow me to shift gears now and tell you a story.
A few days ago I was driving along on a wet sandy highway. The snow had been melting en-masse for days saturating everything with gritty grime that looked and felt noxious to the eyes. A semi-truck sped past me spraying me with highway muck that completely obscured my view for a moment. It was shocking and yet oddly familiar. Automatically I turned on the windshield wipers and sighed with relief. Doc had changed the blades for me creating neat clean swipes that enabled me to see better than ever. I found the whole thing rather exhilarating and refreshing. I remember thinking, "You know, if I had to describe this year in a sentence or two, this is exactly how I would describe it." It has been a gritty, dirty, grimy, scary, obscured, powerful, mess of a year that sped up from behind covering what I once knew. The year's end, however, finds me feeling strangely refreshed, wide-eyed, cleansed, quiet, lighter and full of perspective that I would never have had had it not been for the blades of Life taking gentle swipes at my old ways, clearing my view.
One of the things I think is important to write about is a question that I've carried with me for the last year in the hopes of finding its answer. I remember in the first few days after Aria's diagnosis while she was still in the hospital and we were reeling, hearing things like,
"It changes you."
"This kind of thing sure does give you a greater sense of appreciation."
"It makes you never take a moment for granted."
I’ve carried with me since then, "What is 'IT' exactly?"
Is it a diagnosis of cancer? Is it tragedy? Is it the realization that life, as one knows it, can come to a grinding halt at a moment's notice? What is IT?
What is IT that makes one more grateful and appreciative and present? Is it fear? Is it guilt? Is it shame for having wasted moments? Is it a new sense of purity? Is it coming closer to the Divine?
I remember hearing these comments and nodding in agreement but feeling empty. I agreed because it sounded good and even right but I was nevertheless left questioning and desiring more. I've spent this year searching and this is what I've discovered.
By far the most tangible and glaring realization on my path to discovering IT has been that each life is unique and precious regardless of how it is packaged in the many disguises that try to separate, distinguish and oddly enough compartmentalize and group us. Race, religion, political views, gender, age, and so forth are such superficial defining points despite one's deepest convictions.
I haven't met a single family who isn't exactly like us; scared to death about losing their child whom they love more than anything. That, folks, is all that matters in this kind of circumstance. Sure, there are many things that make us different; economics, education, religion, world view and the like but none of that amounts to much when confronted with the reality that Life ends in ways that shatter the illusion of "how it ought to be." There is no fair way or right way or just way. There simply IS. Spending a year with dozens of families dealing with the consequence of 'what is' has taught me that we are more similar than different.
January 15, 2008 will always be the day that Life and all of it's masking layers was peeled away leaving me with only a core. I learned that the core I call myself was skimpy and a little pathetic but solid. I learned that I'd have to discover how to continue on in spite of feeling perpetually cold, raw, vulnerable and exposed.
I kept reading things discussing issues of attachment and illusion. Some of it makes sense and some still does not. What seems clear to me now is that IT, my friends, is an all-encompassing illusion and a powerful one at that. IT is all that I mentioned and more. It is tragedy. It is cancer. It is life-threatening illness. It is fear. It is guilt. It is emptiness. It is the sense of fairness. It is disappointment. It is also goodness. It is beauty. It is peace. It is joy. IT is everything we know now and believe now that is suddenly shattered, pulverized, and obliterated beyond our reckoning, forcing us to examine everything we know and believe. For me, 'IT' was always something that happened to other people. IT wasn't anything I could claim as my own or so I thought. I often felt a sense of tragedy and loss when observing from afar and perhaps I was affected enough to change a little but nothing compared to the force of IT happening directly to us. What's worse is IT didn't happen to me. IT happened to my daughter and to this day that seems more harsh and brutal because she's so young and so innocent, which instantly stirs the attachment to the illusion that 'there is a certain just order to things.' Up until a year ago IT was a philosophical debate I had with myself. IT was a reminder to appreciate Life and know that it was gift. IT was a nagging voice that filled me with guilt and guilt's real truth, self-loathing, whenever I faltered. IT was a slap in the face to take notice that everyone everywhere suffers for all manner of reasons. IT was a soothing voice telling me that I wasn’t alone.
I know this is esoteric and perhaps even strange but stay me with if you will. You see, I'm learning that IT, that is, how I defined my life before Aria's leukemia was a life with little crisis and real stress. My life had little suffering and real hardship. My view was positive, joyful, hopeful, blissed-out and serene. Beauty was a real occupation of mine wanting to create a beautiful home filled with fresh beautiful food surrounded by beautiful natural things and gardens. A year ago that changed. Suddenly my life was filled with worry, anxiety, fear, death, illness, medication, hospitalizations, clinic appointments, professionals I never knew existed and a journey whose end was completely obscured to me. IT became dark for me. You may recall the cave I journeyed through. You may remember the dark menacing solitary climb I described. I was sad and scared more than all of my years combined. But Life is funny and I was often given jolts of the beauty I once knew. I was revived by friendship and supported from unexpected and welcomed places. I was refreshed and empowered by the confidence and experience of others. I was liberated through the process of 'letting go.' I was freezing cold and vulnerable and yet the greatest surprise was the strength and warmth I gained standing there so utterly exposed. The more I opened up, the more I realized what needed opening. The more I discovered and learned about my process the more layers I began to peel away.
IT is uninvited change that humbles us in our powerlessness. IT is a force, a situation, a circumstance, a set of happenings and so much more that has been an extraordinary teacher. IT has made me more appreciative. IT has changed me. IT has shown me what it means to take things for granted and why that is sometimes a good thing. But more interesting than any of that is defining what I appreciate more now than I did before and see the specifics of life that are meaningful while dismissing the many distractions that do nothing for my sense of spirit.
As I mentioned before, I appreciate with sincerity that we are the same. We are one. We are connected despite our differences. The innocence of Aria and that of the dozens of children I have met has made that realization crystal clear. I appreciate how easy it is to be consumed and driven by what others dictate as important. Sometimes this isn't a bad thing but I'm learning to examine that more closely now. I appreciate that we are inundated with fear, scare tactics, misleading information and untruths. What motivates this behavior is no longer welcomed in my life even for entertainment purposes, for I have known real fear. I have faced real threats. I know the power of information and I have seen truth in the eyes of a mother whose child has died. What often gets pushed aside in the bizarre attempts of keeping people estranged from one another for all kinds of reasons is the genuine goodness of people. I appreciate so keenly now that strangers are just friends waiting to happen in most cases. People really do want to do good things and this experience has shown me that again and again and again. I appreciate with great clarity that letting go is simply a vehicle for welcoming a new. I appreciate that my darkness won't last and new light will shed itself upon me once again. I appreciate fully that life is about finding the balance within dichotomy because no singularity exists forever.
We cannot always enjoy happiness while denying the lessons of anger and sadness. Likewise, we cannot endure always in a place of sorrow for do to so denies us noticing that joy exists in the smallest of. We cannot always be hopeful because to do so denies us the lessons of doubt. We cannot always remain doubtful because doing so denies us the power of hope. The list is endless. This used to be something I appreciated intellectually, but now I appreciate it as a blending of what I know and what I feel. It is becoming a way of life.
I have come to appreciate in a different way my need for humility. It is my humility that keeps me open. It is my humility that empowers me when I'm most vulnerable. What I have learned is to pay attention to those things that before I would have desperately tried to dismiss; those voices that berate me and give me a hard time constantly challenging my mood. Just when I want to sink in self- pity and roll around in it like a pig in a mud puddle, I hear a voice that tells me to snap out of it. Sometimes I really hate that voice but I'm learning to listen and realize the folly of my attempts to stay in a place that doesn't welcome the change waiting just ahead. I appreciate more deeply that my limitations and fumbles aren't negative reflections of myself or sour projections of who I wish to be. Instead, my humility is teaching me that they are companions, guides and mentors continuing to instruct me and show me the way. I appreciate that I no longer need to dismiss those aspects of myself I don't particularly like. In fact, it is through the process of admitting them and accepting that they exist in me that affords me the opportunity and the sanctuary to transcend them. To deny myself a relationship with those things that cause me to roll my eyes, groan and shudder is what keeps me mired in their strength. I appreciate I no longer need to do that.
I appreciate the fragility of all life. I appreciate that the human spirit is infinite. I appreciate that I'm constantly defining and re-defining what 'God' means to me and I appreciate deeply that I don't know. I appreciate the power of silence. I appreciate pause. I appreciate curiosity and endless learning. I appreciate that growth is only achieved that way. I appreciate those things I can control and I'm learning to appreciate those things I can't. I appreciate the lesson I've learned that I can't control much and I appreciate even more the power of trust this has shown me.
I appreciate that I hate that this happened to Aria. I hate every single minute of it! I hate that I've learned what I've learned and how I've had to go about learning it. I appreciate that I hate that I agree with Anthony de Mello's idea that "real growth is only achieved through pain." I appreciate that I still wish to go back, that I'm hanging on to what I once knew although they are but shreds now. I'll let them go eventually and one day notice how they have re-woven themselves into my life. I appreciate the tapestry of my life and its many textures and color. I care about it deeply.
Through all of this appreciation, I have changed. My perspective has changed and I dare say that none it is particularly bad nor is it particularly great. It simply is. I suppose the change I embrace quite dearly is that change is the driving force of 'what is.' I'm no longer spending energy resisting change. I suppose I may be reluctant, hesitant, and even a little wary but I've learned that it is better not to resist. I've learned that my fear of change is a lack of information and I've come to celebrate my assertion in seeking it.
As I remember driving along the highway just a few days ago, I have this sense that I am the windshield that has just been sprayed with unwelcomed gritty grime that is a little unnerving but as it is swept away I realize the clarity of my view. I'm convinced I would never have noticed the grit and grime for what it is nor would I have noticed the relief that comes with truly seeing. I can't say that I'm thankful for this experience. I'm not. I haven't befriended this anguish but I haven't dismissed either. It is simply a constant companion and I've accepted its presence. The foe that is IT, the attachment I still have about death, lingers but it is so much less menacing, angry and heavy. Rather, it is much more like a foggy mist that is hard to grasp yet sensed all over. It is oppressive and oddly pleasant. It is seductive and enticing with a fearsome hold, but I've noticed that when the fog lifts, the solace I experience gazing upon the big blue sky is beyond words. The IT that is my relief and calm I know is more like the clouds capable of infinite display. I've come to appreciate with a full heart that this is Life and the flexibility required is great.
The core I call myself is still skimpy and a little pathetic but I think it is even more solid and that's good enough for me. I know I can take the swipes of the blades of Life. I know that "Come what May" I will continue on. I can. I do and I will....~j
Aria and January 2009
This is one of my all-time favorite pictures!
This is our view from the kitchen window.
This is what I see when the sun rises!
January 13, 2009
Subject: Aria and January 2009
Our year anniversary is just 2 days away and it is very real and raw to us now. At different times over the past few days Doc and I have been teary and emotional talking about it. As we are remembering we’re shaking our heads. It is a continuation of suspended disbelief. It is still hard to acknowledge that Aria has leukemia and all that that means and at the same time it has become such a part of our normal that it's impossible not to acknowledge it. I have many thoughts about this past year that I'll share with you soon enough but suffice it to say that we continue to be well.
Aria continues to feel terrific. She is as healthy and as vibrant as ever. It is sometimes easy to forget and, my, it is tempting too. The fact that she is doing so well is "all relative" as Doc would say. Aria had a lab check on January 5th and FINALLY her counts are where we want them at 1519. This is right in the target range so we are keeping her at her current med levels and will check her counts again on the 19th. In a week Aria will go back to clinic to have a spinal tap with methotrexate injected directly into her spinal fluid. This, as you know, will continue to happen every 3 months. It is hard to believe that a year ago she was having them once a week! I find it incredible to consider having spinal taps every 3 months a wonderful change. Indeed it is, but it remains a horrific reminder of the intensity of her disease.
Aria has returned to school after a month long hiatus, which was part holiday and part illness related. We, as a family, are finally cold, cough and sniffle free after what seems like forever. I am enjoying this time of health and energy. Even though we've been socked-in with dense fog obscuring my view, I feel light and sunny. I am rejoicing in that and savoring every single moment of it.
As I look to our year anniversary, I notice that my shoulders are relaxed. I am creating art again. I'm planning the gardens. I'm welcoming back things I had to let gp. It is an incredible feeling and I am grateful and very humbled by it.
With that I'll leave you with the line of the day from none other than Aria. We were playing 'go fish' recently and just before she began counting her cards she said, "Hey Mama, would you mind shoveling my cards for me?" I think the fact that we have had over 70 inches of snow has had quite an influence. Don't you? ~j
Sunday, September 13, 2009
Aria has a cold
December 13, 2008
Subject: Aria’s got a cold
It came COMPLETELY out of nowhere yesterday. We went to the Christmas Party at the hospital. You know, the place where pristine health is sort of guaranteed. I never would have gone had Aria shown any indication that she was getting sick. She didn't show any sign whatsoever until we were leaving and I was buckling her in her car seat. She was asking is we could go to McDonald's and I heard the stuffiness in her voice. "Uh-oh!" I groaned to myself. Later that day she complained of a sore throat. I watched her all afternoon and evening. She was fine with the exception of being a little tired and stuffy. She's been back on her chemo for a week so clearly her immune system is being knocked around again.
I woke up at 2am last night worrying and wondering. Doc was leaving in a few hours for Kansas to attend the funeral of his aunt. He'll be back late Monday night. I was imagining what to do if Aria woke up with a fever. I imagined having the hospital bag ready; extra clothes, mittens, hats and gloves because we're in the middle of our first big snowstorm. It's beautiful by the way! I love it..really I do! I thought about snacks, movies, pillows, blankets, a port-a-crib for Rianna in case we all have to sleep over. I was thinking about where Reo would sleep; couch or chair. I was feeling very tired and at the same time could not for the life of me get back to sleep. Hmmmm I wonder why? I was thinking about the words of Pema Chodrin I had just read. She was talking about being able to find joy if only one allows themselves the permission to see it. Her words and those that she quoted from Thich Nhat Hanh's "Walking Meditation" resonated very deeply with me. I knew I would be ok. I still got up and checked on Aria though. It was 3 am and thankfully she wasn't feverish! I went back to bed and started to fall deeply asleep when Doc woke up to say goodbye as he left to catch his place. It was around 4 30 and I got up shortly after that. I'm ok.
Aria slept soundly and in fact slept in. She felt warm when I checked on her and when she woke up around 7 30 I took her temperature. It was 99.0. Not a fever but also warmer than her usual so I'll be monitoring her very closely today. She is definitely sick with a stuffy nose and cough.
That's the thing, guys... I was so thrilled to go to this party and we had a ball! The kids got to visit the real Santa, who was extraordinary. He and his elves gave the kids wonderful presents. We visited with some great friends. It was festive and fun and just a whopping dose of joy. We all needed it. It was shattering to get into the car and listen to Aria and know that she caught some kind of bug probably in school that's been brewing for a few days and decided to pop out just after this party. I couldn't have known that it was happening but I still feel bad that she may have exposed some other kids to this. It is not overly dramatic to say that it is a wretched a feeling.
Some of the words I read last night keep entering my mind this morning. I'm paraphrasing because I don't have the book in front of me but it went something like this; “the greatest obstacle to joy is resentment. I think that's true and right now I have to admit that I resent Aria's leukemia. It is a horrible thing to admit but there it is. I resent it. Now that I've identified that and I've admitted to you, it no longer owns me so I can work on letting it go and in its place welcome that joy that defines Aria, Reo, Rianna, Doc and I.
I'm going to go and face this gorgeous snowy day. I have a smile on my face that isn't a mask to the concerns I have but a smile that reflects my confidence that everything will be fine. I do, however, ask that you keep us close once again. ~j
December 14, 2008
Subject: Aria is MUCH better!
Phew! Can you hear the relief from over here? Yesterday, Aria steadily improved throughout the day. She still has a little sniffle and a little cough but no fever. The kids slept with me in the big bed last night since Doc is in Kansas and I felt her cheeks all night long. She stayed nice and cool! She is in marvelous spirits this morning and we are planning a fun day around here. It is 0Foutside right now so I don't have any plans to leave the house! We'll probably make some cookies. I really want to make a gingerbread house with the kids this year too. Who knows maybe we'll get wild and crazy and make the dough for that!!!
Thank you for all your thoughts, prayers and good wishes! I am so very grateful!! Much love and warmth (literally!) to you all!! ~j
Christmas Trees
This is one of our Ponderosa Pines that stands like a giant Christmas Tree in the snow. I love this tree!
December 10, 2008
Subject: Christmas Trees
When I saw her standing at the nurse's station as I was leaving for the day, I was stunned. I wondered whether she was visiting, thinking that her daughter had already died as expected. I also wondered if by some miracle her daughter was still alive and they were on the inpatient unit enjoying some borrowed time. I couldn't wait to find out what was going on with her. As I walked out into the hallway, Reo, eager to leave, was pestering me. "Come oN mOm!" he moaned. Her back was to me but she turned as I approached and a warm smile filled her face. It was a crossroads moment; our paths intersecting gently and I wanted to savor every bit. I said,
"I'm so happy to see you and I'm a little surprised too. How are you?"
She shrugged with the 'whad-a-ya-gonna-do?'attitude I'm beginning to understand so well. She told me that they came back for treatment because her daughter had indeed surpassed everyone's expectations and there was a sparkle in her eye when she said it, but it vanished almost immediately when she shook her head 'no' and said with an expression that something foul was in the air, "it'll just be the next couple of days." I stood there without anything to say because although I didn't want to believe what I was hearing, I knew and understood her with great clarity. The moment was about to become incredibly heavy with my surroundings disappearing completely, but kids have a magical way of shattering such moments. It was here that Rianna ran into a vacant hospital room and began to dance and play. I scurried after her immediately because I don't want her to think that she can go into any room she pleases at any time the urge arises. I chased my little one down and when I looked back to see her, she was gone. I think in the process of fetching Rianna and listening to Reo whine, I was able to say a back-handed sort of "bye!" but I can't remember. This was a dangling interaction and departure so it isn't a wonder that she occupied my mind the entire evening.
I came home and wrote about them. I was deceiving myself and you with what I knew. I knew she and her daughter were not going home. I knew, "It's just gonna be a couple of days" meant death was knocking on their door. It is strange how a little bit of denial and hope for the miraculous can cloud the reality before one's very eyes. I was devastated for them to say the least and at the same time I was curious and peaceful. I wasn't scared. I wasn't anxious and I wasn't at all thinking about Aria. It was so clear to me that what was happening to them had absolutely nothing to do with the path that I am currently traveling. This doesn't mean that it couldn't. It only means that right now I'm not any where near that path. The relief in that realization strengthened me somehow. It filled me with a curiosity that I spent hours considering. The last thing I wanted to do was intrude. I don't know her very well. We've had only a handful of conversations so I wanted to make certain that everything I said and everything I did was from a place of sincerity, presence and truth. I didn't want a visit with her to be about me. I didn't want to step into their world to satisfy a curiosity that was a based on needing reassurance, which would inhibit me from being fully present to them. I wanted to leave my life at the door and step into their life as they faced life's end for their daughter.
There is an overwhelming desire/need to do something. It is a compelling motivation in moments of true helplessness. I wanted to do something to ease her pain knowing full well that there isn't anything. I wanted to give her something that was meaningful to me that I hoped would be meaningful to her. I thought about it briefly and knew. I collect prisms and I give them away. I love the rainbows they cast. They are enchanting and fill me with positive light. I knew I had one left and I knew it no longer belonged to me. I wrapped it up and wrote a short note that included our address and email and went to bed thinking about them. It was so tempting to want to spout off a childish prayer, “Dear God, PLEASE do one of your miracles! Please spare this child and her family the anguish that is consuming them. Please God, hear my prayer!" I burst out laughing when I listened to those words ring in my head and I told myself to be silent and to listen instead. I heard, "Thy will be done." I love that part of the Lord's prayer. It is powerful and true. I listened some more. Nothing came. I listened. I quieted my mind. I fell asleep and when I awoke St. Francis was with me. "Be an instrument of Peace" was the first thing I heard when I woke up. Suddenly I was really tearful and insecure. I know how to be a 'tour-de-force" type personality but I'm not always very refined when it comes to being quiet and peaceful with others and so I knew I needed some help. Mother Theresa's face kept entering my mind and her presence with me helped a great deal.
I had written that I wanted to visit this family and that I would know what to do and I would know if my presence there was meant to be. I trusted completely in the unfolding of this day, but I knew that I needed others to help me see the way. I first mentioned my intention to their nurse, who I adore completely. She said that she would ask the family how they felt about a visit me from and if there was a particular time in general that would be ok. I let it go at that and enjoyed my day as it was meant to be. A few hours later I needed to go to the Ronald McDonald room for one reason or another; mostly it was to get out of the room and have a walk. I saw that Mary Anne's door was open. She's the director for the Candlelighter's chapter here in Spokane. I've written about her more than once. I knew she was a well of resource and advice. I went into her office. This was a first for me. I had never been much beyond the threshold of her door but today I went in and took notice.
She has 2 bulletin boards in her office. One is oversized and has 2 headings; "Siblings" and "Survivors". It was plastered with photographs of smiling children. It certainly brought a smile to my face until I noticed her picture. She has such a sweet face. Her eyes are slightly slanted and her face is round. She has a great deal of curiosity about her and in this picture she is full of life. It is so hard to believe that just down the other hall, she's dying. She's been a survivor for 5 years now and it saddened me that she won't be going on to live a longer life. I touched her picture and looked at Mary Anne. We nodded together in silence. I looked on the other side of the room and noticed the second bulletin board, which is significantly smaller in size. It is titled "Angels" and there are several photographs there. Half of the children on there were kids that I knew only peripherally. I had seen them once or twice in clinic. I had wondered about them from time to time. It was really hard to look at their faces and to know they are no longer here. The urge to keep shaking my head 'no' was almost uncontrollable. I have so little personal experience with death. I can count on one hand the number of dead people I've actually looked at. I've certainly never experienced the process of a dying loved one and I can't think of a child that has been really close to me, personally, who has died. It was crippling to stand there looking at their innocent and beautiful faces and to know that in just a matter of days her picture would be there too.
Just as I was about to divert my gaze I saw the picture of the little boy whose funeral I attended in June. I paused and remembered him and sent a thought to his family. Then I looked just a few pictures away and in the corner I saw the face of a little boy and I gasped! I had written about him months ago. His parents had received dreaded news one day in the clinic and I was in the waiting area listening to every single word his mother was saying while on her cell phone. You may remember that I couldn't pull myself away and despite the fact that I felt like a wretch for eaves-dropping, I couldn't stop myself. I wanted to hear her voice and her words. I wanted to have some idea of her experience. I wanted to take in every second of it for some reason. I remember that within a matter of days, they were heading to Seattle for what I assume were some last-ditch experimental efforts. It was grim. I remember seeing him, however, a month or 2 later in the clinic. I was amazed! He was in a wheelchair and rather unresponsive, but he was alive and he looked great. I never saw him again until I stood before his picture. Mary Anne told me that he had died 2 weeks ago. It was such a punch in the gut. I took a deep breath.
It's here that I'd love to be able to say something inspirational, something beautiful about the transition from life to death. I'd love to be able to impart some wisdom to you but I'm coming up horribly short. The faces of these children represent the many faces of a brutal disease that they must endure for reasons that are beyond my reckoning. I'll never understand it. It will always remain a mystery to me. Although I'm sometimes accepting of this Mystery, I'm not always and this was one of those moments. I was staring face to face with a formidable foe and I was unable to move.
I looked up for moment and saw two pictures that were slightly removed from the rest. They were unfamiliar to me and the photographs were older. I asked Mary Anne who they were. "That's my son and my daughter," she said. I turned to her and looked deeply. I shook my head 'no' and said nothing. My expression must have been one of question, wonderment, bewilderment, exasperation, anger, futility and the like. She said, "Yeah, I couldn't have said it better myself!" We both laughed hysterically. What on earth is there to say?
I explained to her my situation. I told her that I wanted to visit this family but didn't want to intrude. I told her that I was curious but didn't want my curiosity to be akin to wanting to see some kind of old time freak-show. I wanted to check in with her and make sure my intentions were pure. She gave me some marvelous advice. She told me to follow my instincts and my heart. She told me that when her children were dying, she loved the attention. She loved people coming to visit. She loved the sense of community and support. She said that it was a wonderful distraction at times but also incredibly exhausting. She often felt like she had to take care of those feeling sorry for her and for those fearing for themselves. She found herself in a care-taker role a lot of the time and it was tiring. She encouraged me that if a visit was meant to be to keep it brief. I asked her if there were things that people said and did that were really distasteful to her. Obviously, I wanted to avoid doing anything disrespectful at the same time I didn't want to be completely self-conscious. She reminded me that there are no rules and to just follow my heart.
I spent the next few hours in our room. Their nurse had approached me and told me that the mother was thrilled to hear that I wanted to visit. "Julia, she was really very touched and said to come on down any time." I was elated. Aria wanted to take a nap and Rianna needed one too, so I knew that when Doc returned to the hospital later in the afternoon, I would have an opportunity then. In the meantime, Krista came around and brought tea. We had a long, long chat. Krista knows that I process aloud as much as I process through writing. She has a professionally trained listening ear, but she's also a friend. We talked about the nuances of dying--how some people can't even say the word. They can't bring themselves that close even when death is happening before their very eyes to their beloved child. I can't begin to comprehend it and as far as I'm concerned it doesn't matter. It seems like the most horrific free-fall where one let's go all the while trying to grasp onto something as they fall. There are no rules and people cope however they can. It takes my breath away to think about it.
Krista gave me a wonderful perspective. One of the things she said was, "They have these moments...." She was referring to an art project that this little girl had done. She was able to leave imprints of her hands in clay, which was fired and cured so that she could paint and decorate them. "This is a gift she can leave her mother before she goes." Krista said. It is a beautiful and heart-wrenching thought. When I look closer, it is a moment for this child and for everyone who interacts with her that can be cherished in memory and shared with anyone who cares to know. Her spirit lives on this way and that thought brought a smile. She's had many such moments I understand in the last several weeks of gifted time. I'm quite certain that everyone she's encountered recognizes the reality of her shortened life and has learned to share a core moment with her, rich with purity and sincerity.
It is one thing to say we need to live each day this way and to even believe that it's true. It's another thing entirely to pull it off. I'm not sure I believe that we ought to live each day as if it's our last. It sure sounds good and it even satisfies my need to feel guilty once in a while, but I'm not certain it's true to form. I think it is even more simple than that. I'm beginning to see that to just live is enough; being present to every moment, even the petty moments, the ridiculous moments, the serious moments, the joyous moments alike are all very important. To always live as if we're attempting to reach some other way to live seems like a real waste and certainly inhibits us from taking genuine notice. I don't know. I'll have to give it some more thought.
Krista was sober talking with me. She listens so intently and has patience like no one else I know. What I talk to her about are things she hears over and over every single day by one person after the next. She doesn't seem to tire of it and she's always available with a great deal of presence. I have so much respect and admiration for her.
It was mid-afternoon when Doc got back to the hospital with Reo and I decided then to check in with the nurses and see if this was going to be a good time to visit. They assured me that it was and so I made my way down the hall to her room. I was nervous. I didn't know what to expect and at the same time I had these ideas and images in my mind. I imagined walking into a bright room with her sitting up on her neutral colored non-descript hospital bed. I imagined her doing something on her tray like coloring or doing some craft. I imagined a few people in her room sitting here and there trying to find things with which to occupy themself. I imagined having to open the door to her room. I was consciously aware that I wasn't thinking about what I was going to say. I wasn't rehearsing anything. I was breathing deeply and I was thinking about the words 'instrument' and 'peace'.
As odd as this may sound, the walk down the hall to their room was in slow motion and there was definitely this suspended state of reality I was experiencing. I can't explain it more than that. I suppose it is nothing more than facing the impossible. It is impossible to believe that she is dying and less than a year ago when I first met her she was full of life. It is impossible to believe that children in every city, town, state, village, and country across the globe die in all manner of ways on any given day. I could say this about people in general but there is something halting about children who die. I think most people agree that there is something terribly amiss when a life as we expect it to be lived, particularly in it's duration, hasn't been met. It doesn't seem fair. It seems unusually cruel and yet I'm learning that this is the Mystery. It simply is.
Her door was already opened. I stepped through and immediately lost all sense of time. The darkened room was aglow with twinkling lights from a small Christmas tree that was perched on the desk. It cast a warm and welcoming feeling. I saw her mother coming out of the bathroom. She had just showered and although she was dressed, her hair was still tied up in a towel. She greeted me with that warm dazzling smile of hers. There were a few other people in the room, although no one was sitting. There was a calm constant motion all around me. I was exceedingly aware that I hadn't looked at the little girl lying on her hospital bed. She wasn't as I had hoped and imagined. She wasn't awake. She wasn't sitting. She wasn't coloring. I exchanged a few words with her mother and a wonderful embrace and then I went to her bedside and looked intently upon her. It was scary at first. I have to admit that. She didn't look at all like I had remembered her nor did she look much like the little girl whose pictures were taped on the bathroom door. Her head seemed out of proportion with her body somehow. It was large and round and somewhat flattened compared to her thin frame. One of her eyes was slightly open as was her mouth. Her mother assured me that she was sleeping peacefully because of the sedating pain medications she's receiving. I thought she was unconscious and it made me glad to know that she had been sitting up earlier and talking to people. There was no denying it--she was lying there in some Divine process of dying right before my very eyes.
There were more people in the room and her mother took great care to introduce me to everyone. "So and so, this is Julia and her daughter is an inpatient right now. blah blah blah." It was so sweet of her to try to include me in such a way. After about the third such introduction, I could almost see her words trailing into vapor before they reached the other person's ear, who was, naturally and understandably, completely uninterested in meeting me let alone knowing anything about me. "This is Julia and she...has......daugh...here....poooof!" gone. It was hilarious to me to see it so clearly and I suddenly became very aware of Mary Anne's words; "I felt like I had to take care of people..." I didn't want to be taken care of and I didn't want her to feel obligated in this way. I gently shook my head no and said, "Thank you but never mind, it's ok." She smiled. We spent a while staring at her daughter and had an incredible conversation.
I asked, "So, what happened? I saw you in October and at that time you were planning to go home." She took a deep breath. I wondered how often she's had to tell the story. I didn't apologize. I breathed with her and calmed my mind as I looked upon her daughter, who was a lot less scary to me now. I know that must sound horrible, because she is a lovely little girl but to see her in this way was new for me and I didn't quite know how to feel. Her mother told me that in October she had already surpassed the 4 - 6 weeks she'd been given back in September. She had received more chemotherapy and was indeed being stabilized to go home and see what happened. When they got home, she was doing great. She felt well and full of life. Everyone was amazed. I think around Thanksgiving time they returned to the clinic so that she could receive platelets and more chemotherapy and go home again for another month or so. Her mother explained that everyone knew that they weren't facing any kind of cure and that it was just a matter of time but they were certainly going to pursue preserving as much time as they could. After this last treatment however, she crashed. She started to get really sick and was admitted. Earlier last week, the family was told that this was it and that they wouldn't be going home. Oh, I can't imagine. No matter how prepared one is cerebrally, the emotional blow must be a kind of hiroshima. Her mother said to me, "You know I think she's always felt that she has to be strong for so many other people who are constantly pulling for her. When she comes here, she can let her guard down and be taken care of. I think, this time, she was done having to fight so hard." She paused allowing her tears to well, "I'm so proud of her. She's my baby and I love her so much. I just don't know what I'm going to do..." I was in tears and I was grateful to be allowed such an intimate glimpse into her world. The whole moment was profoundly touching in ways that extend beyond the scope of words.
She continued, "So, we're just making her comfortable now. She's in horrible, horrible pain since her cancer has now moved into her bones. She's receiving all kinds of pain medication and one of them is highly sedating. But at least she's comfortable." I noticed that she was rubbing her daughter's head incessantly. It made me think of the mother at the wake I went to in June. She couldn't keep her hand off her son's head, rubbing it over and over and over again. I did the same thing as you may recall and I found it so soothing. There's some all-absorbing need to do this. It is unconscious on some level and at the same time it is the very real sense of touch that allows her to feel and to know that life still rests within her daughter. It was a very intimate and beautiful thing to watch.
It was here that I noticed two things. The first was her hospital bed and I commented on it. "Wow! What a fancy bed!" Her mother replied, "I know! It is wonderful. It is an air bed." I'd never seen anything like it. The bed was raised so that the royal blue mattress was about waist high. It looked incredibly comfortable. Her little body was completely encased by pillows and blankets. She looked at ease almost as if she was somewhat melted into the bed. It was so peaceful looking at her now. She had a Christmas tree that was about 8 inches high lit up and resting on one of the pillows. Her mother showed me that it was a night-light that they kept near her so she could look at it. "It kind of gives her one more Christmas," she said.
The other thing I noticed was something about myself that cracked me up. I realized that as a reaction to my fear about looking at her daughter, I was trying to get as close to her (the mother) as possible. I kept moving closer and closer, trying to make some kind of physical contact and she kept taking one more step away from me until she was practically leaning up against the wall. Oh my God! I was horrified. I immediately put myself in check and from then on was acutely aware of simple boundaries such as personal space!
Several more people entered the room and wanted time with this precious little person. The mother and I moved aside and I listened to her tell me what their 5 years have been like. She knows the end is near. She knows she'll be ok but at the same time she cannot imagine life without her daughter. I suppose that reality will simply have to be faced one moment at a time. We talked and cried and hugged for several more minutes and then it was time for me to go. I gave her my little gift and I told her that I would never forget her and as I put my hands over my heart, I told her, "I'll always keep you close." I said a silent good-bye to her daughter lying so still on her bed. It occurred to me as I was walking out the door that she needed to tell her story. I understand that need. There's strength in telling the story over and over again. There's processing and understanding and there's also little room to deny what's happening and so in it's place must be some realization that can not be escaped. I wonder if perhaps this is but a tiny step toward acceptance.
As I was walking down the hall back to Aria's room I had this overwhelming rush come upon me. It was an honor to visit this family at this stage of their journey. To be allowed to witness something so personal, so intimate and so difficult is really hard to put into words despite the many hundreds of words you've read thus far. I also wanted to cry. It is so sad. So, so, so sad! I was just about to allow a few tears when I came upon Aria's room and I could see her through the window. She was being a lion sitting on her regular hospital bed, scratching fleas from behind her ear with her foot. I could see Rianna walking around like a lion, too, snarling and growling more like a monster than a lion though. I burst out laughing and felt so grateful for the Life I have.
I entered Aria's room and into their bizarre safari that included lions, stallions and power rangers! We played for a good long while and since Aria got the green light to go to the playroom, we decided to saddle up and head that way. The playroom is a pretty nice place, that is dominated by it'slibrary of movies. Kids who are inpatient don't want to play much and neither do their siblings. So if ever you have movies hanging around that you aren't watching anymore, please consider donating them to your local hospital. Naturally, the kids couldn't just walk down the short hallway to the playroom. No, not the Laytons! We had to go down there in parade style. Reo led the band as a power ranger, karate kicking, diving and rolling all the way, followed by Aria on all fours as a lion. She paused at the nurse's station to show them her teeth and a big yawn as well as give them a shake of her tail/ butt! You can imagine the smiles and the laughs. Tagging along as the caboose was Rianna, also as a lion/monster. It was thrilling to see so much life in these kids.
Just outside the playroom there was a large Christmas Tree and the mother I had visited a little while earlier was there with a few family members. They were taking a break and looking at the tree. I introduced her to our kids. She was so generous to smile and laugh as she did when watching them. She, of all people, fully appreciated the fact that they are full of life and she understands so well just how fragile Life is. She graciously spent a little time with me on my path and I can't think of a kinder more generous gift than that. We said our good-byes one last time and once again I left to my world and she to hers.
Christmas Trees have additional meaning to me now and for the life of me I can't tell you what that meaning is exactly. It's probably a lot of things, not the least of which began so long ago with how I described Aria's hair falling out; like the gentle cascade of pine needles that one suddenly sees not in the process of falling but rather after they have found a resting place on the ground beneath the tree. The Christmas Trees in her room inviting the Mystery of the season and the Mystery they are now witness to is profoundly affecting. The twinkling lights that give one pause to reflect and to enjoy. The splendor of their color and the majesty of the tree itself is something to revere. To watch this family stand before that huge Christmas Tree on the inpatient ward knowing that their daughter is more than likely going to die before December 25, made very real that Christmas ought to be celebrated on any given day. It really doesn't matter. Does it? The celebration of thoughtful giving-- the idea that one can give of themselves with infinite possibility. The coming together in a way that reminds us of our connection and awakens us from our separations is something deserved of daily consideration.
I see no reason whatsoever for all of the rushing into a funnel that pours itself onto a single day. It is absolutely absurd especially when face to face with someone celebrating their last Holiday. We all know this. For me, that perspective is more than abundantly clear this year. But more than that, as I gaze upon the lights on my Christmas tree and those scattered all over town, and I think about all the dichotomies that have come to define this journey; life and death, light and dark, joy and sorrow, hope and despair, wellness and sickness, abundance and nothingness, clarity and obscurity, I still see such brilliant glory and beauty. I'm surrounded by it all the time and this awareness reminds me of the promise I'm granted each day. As the solstice nears and our shortened days become longer, may the promise find you in celebration of twinkling lights, color, kindness, communion and soul. ~j
December 10, 2008
Subject: An eternal light
I just received word that my little friend died last night around 2 30 am. I'm assured that she was peaceful, pain free and surrounded by family. She was 8 years old.
It is on this day that I celebrate her life and recognize the eternal light she has given me.
~j
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