Sunday, May 24, 2009

The Reflection Begins: January 15, 2008 My thoughts

After that first outpatient visit, I had been on the phone with my parents and Doc with his parents explaining what was going on. They had been very good to keep everyone else updated and more and more people were asking to be added to my email list so they could receive updates as well. After I sent that email to my Goddesses, I spent the next few days hunkered down reflecting on what was happening. We were having incredible snow storms that were beautiful and cleansing. I suppose at the time, it offered me a blank canvas upon which to toy with thoughts.

Sending the following email was a truly cathartic moment. I think this was when I discovered Aria was my Muse and that I indeed had a voice that needed to be channeled as well as a need to write what was in my mind that possessed a force I wasn’t able to suppress. From here, my writing changed and I think it reflected my attitude in general.

January 29, 2008
Subject: Tuesday January 15, my thoughts

It is Saturday evening January 26 2008 and it has been snowing all day. I LOVE the snow. I haven't been in this snow yet, but I've been watching it admiring its purity and its silence. It has been a beautiful day. Aria's first outpatient procedure and chemo treatment went really well...truly as best as we could possibly have hoped for. In some ways the time flew and at the same time it stood still. I'm finding my perspective these days is colored by many opposites. For instance, I am both calm and panicked. I have a sense of peace and terror. I'm sick to my stomach and famished. I'm exhausted and energized. It is the most peculiar existence but like virtually everything we're doing now, I'm observing it, embracing it and going with it. I feel strangely free. Aria was starving most of the morning of her procedure with a real craving for eggs. We had to try to distract her for hours and this was challenging. Understanding tones, "honey, I'll get to eat soon..." or "dag nab it..what a drag...." or "I'm sorry you're so hungry" were just not doing it for her. Aria was pissed and she was hungry. Rather than turn beastly, she was whimpery and limp. I tried all kinds of things. We looked for everything red. We looked for everything with the number 2 in it and so on and so forth. But FINALLY she was taken in for her procedure. That lasted all of 45 minutes or so. She woke up really well and still famished! Waiting for her was a bagel and cream cheese, oranges and oreo cookies, all of which she inhaled and still wanted her eggs when she got home. This is the steroid kicking in and it only gets worse as we go along. We have 20 more days of it...HOLD ON!!!!!! She had her chemo treatment and we hit the road. All was fine. She had some nausea, a little headache but no leg pain, which we were dreading. We'll see over the next few days but so far so good. The child played out in the snow today for about 10 minutes. She helped Doc plow for heaven's sake! INCREDIBLE! We are very pleased with how well she is doing. We're watching her like a hawk obviously but happy that she is resting really, really well and so happy to be in her own bed. It is so nice.

It is now Sunday Morning January 27, 2008 and it is STILL snowing!! It is just gorgeous. I'll take some pictures and try to post them for you!! We are expecting snow all day, up to 10 inches for the weekend! I'm in heaven. It's the really good stuff too; nice snowman making, monster making and angel making snow!! Aria had yet another wonderful night. She slept all the way through once again. She has a pretty hearty appetite but is unfortunately dealing with some mixed messages from her gut; her tummy is rumbling and uncomfortable but she must be asking herself, "Am I hungry?" or "Am I going to throw-up?" Poor baby...she's eating and everything is staying down but her gut is gurgling and churning...Still, no headache (her complaint is "my head feels bent!") no leg pain ("my legs are bent") and no real lethargy. She's doing so well! Yesterday, she told our neighbor and dear, dear friend/surrogate family member, Tata, that "My mama told me that my hair is all gonna fall out but then it will all grow back!" She was waving her arms as if waving a magic wand and wiggling her fingers and hands as if casting a spell. Her playfulness and full acceptance of the matter was very reassuring to me. I feel it is important to keep a level of nonchalance about so much of what we're facing otherwise I think it would be easy to be consumed by the daunting newness in our lives. It by no means de-emphasizes the seriousness of everything happening nor do I think nonchalance is synonymous with being flippant. Instead, if I can shrug my shoulders at what Aria has to face with an air of confidence, a "Well, this is what we have to do, so let's do it" kind of attitude, then I'm certain she will mirror my confidence and indeed she already has. Then again, I have to be able to fully admit that my confidence may be the result of me mirroring her and not the other way around! In this moment, we are all well.

I wanted to take a moment to once again thank each of you for writing to me to tell me how much you've appreciated these updates. I recognize they are long, somewhat graphic, and perhaps even a little tedious. Thank you for humoring me in reading them and taking the time to share your thoughts. In all honesty, I am not writing them for you. Selfishly, this is an exercise for me. This has become my journal, my open book and you are all invited. Your words of encouragement and your praise have been tender strokes to my sometimes wavering and fragile psyche. I appreciate them so much so please keep the emails coming and the letters. They are such a bright light in our day where clarity and cheer falter despite the courage and confidence you read in these thoughts. I'm also deeply touched that you would share these emails with your friends and extended family members, who have written you or me with overwhelming kindness and generosity. This, too, is the human experience and it is in some ways more overwhelming and more powerful than the tragedy we are learning to cope with now.

Since January 15th I've been in a place of profound reflection and introspection. I don't feel closed off to others in the least. I don't feel any sense of withdrawl from people that I've heard can happen in times of grief and sorrow. It is a strange thing to be dealt something that I often thought of in passing and always with a sense of fear, dread and inconceivability. "How do families deal with things like this?" "Oh my God, what would I do if ever one of the kids got horribly ill?" We've all asked those questions and we still ask those question. I'm still asking those questions, "Oh my God, what if Reo gets really sick or breaks an arm or just happens to be walking outside and some space junk lands on his head and he dies! What would I do?" I know it's insane but I don't think I'm wrong in saying that most of us at some time or another have asked similar questions about those we love. The totally flat unhelpful response one hears all the time is, "you simply do not know what you would do." There is an element of truth there, but it is such a knee-jerk obvious response, it just pisses me off. Of course you don't know what you're going to do! We don't have the foggiest idea of what Life has in store for us. However, this idea masks the truth of the matter, which is that no matter what Life deals, you will always, always, always tap into that "do-do-do" mode to simply survive. For me, it was as simple as that.

Tuesday morning was like most other mornings. We got the kids ready for school and had a nice drive into town. Aria's shoulder was still very tender but I had convinced myself that she had some kind of inflammation and I'd probably have to go pick up some prescription. I had definitely entertained the possibility of something dreadful but I really couldn't visualize that so it was relatively easy to put out of my mind. It was around 10 30 am and I was heading back to school to pick them up. Rianna had fallen asleep in her car seat in the 2 miles it took from our driveway to the highway. I vividly remember turning onto the highway having a thought that it would be so much fun to contact the Spokane Fine Arts/Drama organization at one of the theatres and see if I could maybe spend some time in their costume department. That, and I thought about getting the kids involved in some kind of drama program too. It was all very sketchy and fantasy oriented but still very fun and amusing. It was 10 45 and Doc called my cell phone, which wasn’t out of the ordinary. I thought maybe he wondered if I had heard anything from the Doctor about her lab results that were drawn the day before. This is the gist of that conversation.
"Hi hon, what's up?"
"Are you driving? On your way to pick up the kids?"
"Yeah, I'm about 10 minutes away."
"Good, I'm going to meet you at home and then we have a 1 o'clock appointment for Aria."
At this point my stomach has literally jumped out of my body and what has replaced it is a soaking wet wad of a beach towel about to be wrung beyond recognition. In addition, I felt all the blood drain from my head and begin flowing around the beach towel that is now my stomach.
"Doc? (pause) Is everything alright?"
"Uh, no it isn't. Are you driving? Are you close to the school? Ar..
"Doc, what is it?" I'm gripping the steering wheel. I notice that my knuckles are white.
"Julie, they think Aria has leukemia."
I can't speak but inside my head I'm screaming all kinds of obscenities I'll spare you here.
"Julie, I need you to hold it together for the kids. I need you to pick them up and talk to them about what we're going to do. I need you to prepare them that we may have to be admitted in the hospital."
"Shit, the hospital?"
"Doc, this is bad..this is really, really, bad."
"Yes it is. We're going to get through this..."
I'm taking deep breaths now. I've parked outside the school and the kids haven't come out yet.
"OK, I can do this Doc. I'm up for it. I'm on board. I'm there. I'm strong." I'm totally trying to convince myself. Right now my beach towel stomach is beginning to be wrung.
"I'll meet you at home. We need to pack a suitcase for the hospital, snacks and so forth."
"Got it. I love you Doc."
"I love you too, see you soon!"
Wrinnnnng...wriiiing...shhhplash...ssssplush!! goes my beach towel stomach.
But now the most amazing transformation occurs. My do-do-do button has been activated and suddenly I have all kinds of things to do. I have a check-list in my head, which is trying to suppress the voice that is shrieking nothing but "leukemia! leukemia! cancer! cancer! chemo! chemo! leukemia! leukemia!"

I can see the kids coming out of school now and it is taking every ounce of strength I can conjure not to be in tears. Aria has no idea what she's about to deal with. I don't either for that matter and I'm completely losing it but keeping it all together at the same time. The kids are great! Aria is feeling better and shows me that she has full range of motion in her shoulders. Reo can't wait to show me everything he made in school. Aria jumps in the act too and shows me all her treasures. I take a moment and notice every single detail. I am deliberately trying to be gentle in my movements, my words and my tone. My stress hormones are kicking in and I'm sweating and my towel stomach is wringing itself again. wwrrriiiinnnng! I'm convinced I'm going to vomit so I start breathing. I put the kids in their seatbelts. They are so innocent, so pure, so sweet, so blissfully unaware. I am completely devastated and don't know what to say. Tears well in my eyes and I let them. I sit in my seat, take a deep, deep breath, allowing my tears to spill over and begin heading for home, toward our new life. I tell the kids at this point, "Hey guys, I'm feeling really sad right now so don't be scared if you see Mama cry. I'm feeling sad because, Aria, you are really sick and we need to take you to a special doctor to help us make you feel better. So we're heading home and we're gonna meet Dada there and then we get to go to the hospital and meet a bunch of new friends and doctors to help us understand why your shoulders hurt." They are completely silent. They are processing this news too. They are, without a shadow of a doubt, sensing my emotion, my fear and my sorrow. I don't protect them from this. I let it be what it is. I made a silent vow to be completely honest about everything with the kids and most importantly with myself.

The drive home was long but my check-list was clicking away. When I arrived home, Doc wasn't there yet, so I decided to make everything as "normal" as possible. I made lunch for the kids. I went through their backpacks and so on. Doc arrived a few minutes later. We hugged and breathed and exchanged a look that transcended words. We went at it; divide and conquer mode. Check, check, check went the list and suddenly it was time to go. We found ourselves at the pediatric oncology clinic checking in. At this point my towel stomach was once again wringing itself uncontrollably. I couldn't believe my eyes. I noticed that my feet were firmly on the ground and I was taking in every single detail of the waiting area but nothing made any sense. I kept hearing myself say, "We only might have to be in the hospital. They only suspect she has leukemia. It still could be something else. We're here to check it all out." We go to a very fun playroom and there are a few kids playing waiting for their treatments. I'm very aware that I must look like a deer in headlights. I have this smile on my face that I'm aware of that is trying to send a reassuring message, “Don't worry, I am not going to puke! I will not puke!" to everyone around me. Wwwrrriiiinnng goes my stomach towel.

Nurses show up and Aria is already checked in. I'm feeling suspicious. They know something I don't know. wwrrrrriiiinnng. I need to sit down. I can't even tell you what they did, if they did anything like draw blood. I honestly have no idea. What I remember VERY clearly though is the hospital bracelet a nurse puts on her arm. We have not met a doctor yet who has looked me in the eye and said, "Julia, your daughter has leukemia and has to be in the hospital!" I ask her if this is standard protocol for the clinic and the nurse looks a little baffled but she is incredibly gentle in everything she says and does. "I'm sorry," she begins, "but I'm pretty certain you all are being admitted. Wasn't that your understanding?" Wwwrrrriinnnnngg Doc tells her that we understood that it was a possibility but it hadn't been decided. She smiled nodded her head and told us that indeed we are being admitted. They DO know something we don't know! I'm aware that I'm feeling completely insecure. We are led to an examination room where we wait. Aria is limp and tired. She is sensing the anxiety. Reo is totally amusing himself with some pencils. Rianna is nursing. Our oncology doctor comes in with another woman and begins to tell us what they know and understand. They indeed suspect Aria has leukemia and this what we know about leukemia, etc. etc...Wwwrrrrriiinnnngg.. I'm aware that I'm standing and wandering around like a caged lion. For some reason I find this hilarious and in my head I'm laughing hysterically. It is so weird. I'm up and down and up and down. Doc, meanwhile is steady...completely calm and holding Aria. He is all about numbers and data and I feel completely reassured by his presence. It is very much like being freezing cold and suddenly having someone wrap a heated blanket around you. We had a long, long conversation with Dr. Angela. At least it felt long. She was incredible. She answered every single question as if it had been the first time someone had asked it. She was positive and so hopeful and at the same time extremely honest and forthcoming. There were no illusions to what she made certain we understood. I was so grateful for her. The news that we would likely be in the hospital for 2 weeks or more, WWwrrrrriiiiiiinnnnnggg...was like falling down. It really was. If you will, consider for a moment he last time you fell down. It is the most slow motion uncontrollable series of events that leaves, me anyway, breathless, confused, in pain and often humiliated. This news spared me the humiliation but I literally felt like I had fallen down and hurt myself. When she told us this she was beginning to tell us other things when I cut her off. She was so gracious and gentle to allow me to interrupt her. I told her that I needed a moment to wrap my head around 2 weeks living in the hospital. I had 2 other kids, a farm, animals, school, my life, my hobbies etc.etc...She breathed deeply, nodding but saying nothing. She didn't have to. Then she told us about the treatment plan more or less and once again I fell down into the reality of 2 to 3 YEARS of treatment. WWwrrrrriiiiiinnnnngg.. At this point, I am thinking of almost nothing but how badly my stomach hurts and how sick I feel and how completely depleted of fluid my body was. My towel stomach has been wrung dry but was now tying itself in huge knots. We process more information and then Aria is examined.

At some point during our conversation I ask our doctor point blank, "based on your experience and what Aria presents with are you pretty certain that she has leukemia?" "Yes." was her response and she looked me straight in the eye. I loved her immediately. I trusted her completely. My suspicion vanished and I took comfort in knowing that they knew before we arrived what our future held and they knew how to hold our hands, open the door and lead us to the other side. The other Julia couldn't believe this was happening. This new Julia was grounded and ready to make preparations and to surrender in some ways. For the next several hours the 2 Julia's were facing each other with a myriad of emotion and thought. We were led to our hospital room where Aria was checked in again. I was so aware of everyone's face and their smiles and their softness and tenderness. It was a frightening experience in a very loving secure place. I was also very aware that I was hanging on to every single word anyone said to me. Peoples' voices were clear and what they said rang and rang in my head. When someone said, "We'll be hooking Aria up to some IVs", I was ready and was taken back when that reality didn't actually happen for hours later. The old Julia was quiet and observant. The new Julia was asking questions and trying with every ounce of my being to be considerate, articulate, and equally gentle. Everyone and I mean everyone behaved as if they were a masseuse for my psyche.

We settled into our room and I was hoping my stomach would settle. No such luck. My head ached and I was beyond tired. I was so exhausted and emotionally drained that I could no longer concentrate. It was fast approaching 8 pm and it was time for Reo and Rianna to go to bed. We decided that I would take the kids home and Doc would stay in the hospital. That was the plan for at least this night. I remember driving home telling myself to stay awake and telling my stomach that it could settle itself. I was so tired I couldn't cry even though I wanted to. I brought the kids inside and got them ready for bed as we always do, except without Aria, which felt so, so horrible. I asked Reo to stay with me in the Big Bed, which he did and we all went to sleep. I remember thinking as I turned out the light, " So long old Julia....this new Julia has something else to do." With that, I visualized taking my knotted dry beach towel stomach out to the clothesline. I hung it up and let it wave away all I knew before and at the same time act as a flag to signal the beginning of a new journey....

It’s one thing to write about a tragic event in the moment. It is something else to allow a little time to pass, thoughts to season, and feelings to become clearer. This is a difficult process. It is painful and not always helpful to everyone. Like virtually everything in life, there is no One Way to journey toward truth. We must all learn to trust our unique voice and follow that. Sometimes, however, it helps to listen to the voices of experience, those who have traveled before us and made the journey to their sign posted purpose.

I was just beginning mine and suddenly reflection became less intimidating and more empowering. Suddenly stillness and silence were the forces I sought to guide me. It helped a great deal having so many rallied around us, encouraging us with their thoughts and words of wisdom. These are some responses that people sent to me after reading my email.

January 27, 2008 (from a good friend)
Dearest Julia -
Your journal entry below moved me to tears. I am honored to have been included in the rawness of your emotions, insecurities and survival.

I can only imagine how incredibly beautiful the farm is with all the snow. I'm picturing it as I am writing this email. I trust the chickens and rooster are keeping warm and continuing to produce those yummy eggs.

Let's talk about our girl Miss Aria if we may. We are so happy to hear that she responded so well to her first treatment. What a CHAMP!! Are her treatments scheduled for the same day each week? When is her next treatment? We are thrilled to hear that she's comfortable and resuming some sense of normalcy in her life by helping Doc plow the farm. Incredible! Celebrate those moments and remember to find time to breathe.

On my continued journey down the road of motherhood I never cease to be amazed at the strength, resilience and shear tenacity of children. We surely do not give them the credit they so deserve. It's usually at times like this that they remind us what they are capable of handling. Aria is an incredible little girl. She's got amazing determination, spunk, personality, beauty, confidence and love of life. Her love of life will give her the additional strength she'll need over the next year and when she's not feeling well and down in the dumps her greatest assets; you, Doc, Reo and Rianna will be there to lift her spirits. I can't think of a luckier child.

You and Doc have done an incredible job at keeping things as "simple" and "ordinary" for her and I believe that helps her manage her anxiety. I would just like to just remind you that you are all at the very beginning of a long journey and you are by no means in any sense of a routine. This will happen over the next few weeks/months and before you know it everything won't be so hard to manage, coordinate, execute etc. Let people help you, let them do whatever it is they can to help you until you feel you don't need the help. Remember, it takes a village.

I was always really amazed and in awe of the old Julia and can't imagine how the new Julia will be any better. You are an incredible woman, mother and friend. Miss Aria gets her love of life from you. You are the rock of that family and you will all get through this. My cell phone is one and my inbox is open whatever you need - I'm your girl.

Love you so much!!

January 27, 2008 (from a friend of my Dad’s who forwarded this to me)

The details are extraordinary. I feel her pain, her anxiety, her worry,
her desperation. I cry as I read her every word. Please let her know
that our prayers and love will always be there for all of them. I
believe that is the way God shows himself-through the empathy we feel for each other.
God bless them all.

January 27, 2008 (from my sister-in-law)
Your email is beautiful - beautiful and so very sad. I can't express how much our hearts go out to you all. We are thinking about Aria every hour every day. Lots of people like Andy and Allise are asking us for updates, so the branches and support spread. We have been slow to get it in the mail but finally there is a package on its way.
Lots of love

January 27, 2008
Hi Julie my name is Maureen Briggette and I am married to Thomas Briggette who is your dad, Gene's, cousin. We live in Boston. Tommy family is so big that even after 23 years I am still figuring things out. Gene added my name to his e-mail list when I changed my e-mail address recently. I want you to know that Tommy and I are praying for you and Doc and the family. Aria sounds like a strong little girl. I know that it must be hard to have faith but through trials we develop perseverance. Just reading your blog and your words have helped us with our own trials and to be able to focus on your family and Aria who need prayers and strength from the family. I pray that because of your obvious faith that you will always see the light with your heart, when right now sometimes the eyes look toward the darkness. As God wraps a hedge of protection around you I pray that God will give more grace, strength and comfort.

January 28, 2008 (from my Dad, who became one of my most devout ‘followers’. His bias toward me is obvious and very endearing. He’s such a wonderful person!)

To all my Love Ones!

This message is really two messages in one. The first is an update relative to Aria's status through this past Saturday. The second is a description of Julie's psyche and "stream of consciousness" on the fateful day – January 15. It is devastatingly detailed, frank, and heart-rending. To know, on a first-hand report, what it feels like, what goes through one's mind, how gut-wrenching horror can be when confronted by tragic consequences is startling. It is a very long report but, I urge you! -- worth reading.

I cannot help but think that Julie's experience is God talking to her --
patiently, wisely, compassionately, mercifully. How else to explain her description of her "two selves," her pressing her "do-do-do" button? Here is, I believe, a faith we all seek -- faith in ourselves, true, but faith that we are not alone in our travail. Oh, yes, her other two children and her wonderful husband are there with her. And husband Matt/Doc is a rock for sure! But, I sense there is even more -- even beyond these and her circle of friends and others expressing their concern and identity with her in her plight. That "Spirit," "Force," "God" -- call it what you will – is the "Presence-in-our-Universe" that lifts us all to Life and our determination to incorporate It into ourselves. It is the root of who and what we are as humans.
I am grateful to all of you for your prayers, thoughts, and kindnesses in these troubling and frustrating times. God Bless you for everything you do for us!

January 29, 2008 (from my Uncle, who is also hopelessly biased!)

You should write. I feel I am there with you. I think many feel similarly. You have many gifts. I suspect if you took up golf you would give Tiger Woods a run for his money. Let it be known that I, as one of your many admirers, did not wish this challenge upon you, but are simply proud of how you are dealing with it, and are simply proud to know there are people like you on this earth. 
Much love,

I received many such emails, phone calls and letters. Every word, every sentiment, every bit of contact was as meaningful to me then as it is now. Those voices of support reminding me and encouraging me to explore my courage and my strength were monumentally reinforcing especially during those early days when I was so new to the process and so frightened and insecure.

I was thinking today as I was pulling weeds and noticing the delicate flowers of my garden that sometimes we withhold what we want to say for fear of saying the ‘wrong’ thing. It happens. We’re all going to do it at some time during our human career but let me offer this. Even those ‘wrong’ things can be right too. We learn about ourselves when we read and hear things that make us cringe or trigger responses within that we may not have known existed. The trick is rather than waste energy on the other person and what they said and/or did but spend more time examining the reaction we feel within ourselves. It is so easy to dismiss those reactions and blame others for having elicited them, but I think it is infinitely more meaningful to dismiss others for a time and examine our reactions instead.

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