Monday, May 18, 2009

Early Signs

It was Friday, December 21, 2007. The kids and I had gone to a jumping castle gym where they bounced and frolicked for a few hours. Naturally, they all took a tumble that brought some temporary tears but for the most part, they had a wonderful time. We went out to lunch and then ran a few errands that would finish off the last of our Christmas ‘to do’s’. It was an extraordinarily ordinary day until…

I was unbuckling Aria’s car-seat seat belt and pulling her toward me to get her out of the car when she shrieked, “OW! Mama, you just bent my arm!” I was horrified thinking that I had caught her arm in the seatbelt and yank on her in some odd way. She was in tears and I was checking her arm to make sure I hadn’t done something. She recovered quickly and we went into a store and that was that. I thought it was over.

She didn’t complain about her right arm and shoulder again until later in the evening. She was walking around holding her arm bent on her chest as if in an invisible cast, protecting it. Doc checked her thoroughly for a dislocation, a broken bone or swelling of some kind to give us a hint as to what was happening. Naturally, I was devastated and completely confused to think that I might have used a force capable of causing a serious injury. It didn’t seem possible to me because I had pulled her out of the car no different than the hundreds of other times I’ve pulled of the car. It was so strange and unnerving.

Aria is a sunny beautiful little girl full of bounding energy and creativity. Seeing her in tears, whining and complaining was a real departure and it was a little scary because we couldn’t find any obvious cause for her pain. We thought it must be a muscle pull of some kind and that her arm was in an odd angle in the seatbelt when I pulled her out of the car. We gave her a little motrin to ease the pain and that helped tremendously.

The following day, Aria’s arm was sort of limp. She wasn’t using it and it was slightly tender to the touch. We had convinced ourselves that it was some kind of kid bonk and it would take a few days to heal. By the end the day she was moving her arm and showing us that she could lift it above her head without any pain. We were encouraged and optimistic that it wasn’t going to amount to anything serious. The next day, however, we were outside playing when the dogs knocked her down on the hard packed snow smack dab on her sore arm. The pain was excruciating and it took longer to comfort her.

Over the next day, Aria had periods in the day when her arm was very painful and we gave her motrin and it helped. It was strange though because she just wasn’t herself. She was more sensitive and fussy. In the middle of the night she would whimper and moan in pain but it would resolve with comforting and medicine. Still, we couldn’t escape the nagging thought that something was off and we just couldn’t put our finger on it.

It was Christmas Eve and Aria was excited about Santa coming but subdued. She lacked the sparkle and brightness that defines her so completely. Doc and I discussed maybe taking her to the ER just to check what was going on. It is very hard for me to admit that the last place I wanted to be was in the ER on Christmas Eve while it was snowing with my daughter whose arm ached and we didn’t know why. I just groaned thinking of having to spend hours and hours waiting and kept hoping that her arm would just get better. On top of feeling horrible that Aria was so uncomfortable with her arm, I felt the added shame of not wanting to take the necessary steps to figure out what was going on. Doc really wanted to give her a few more days of rest and healing before we took her in to be seen. He really didn’t worry too much about it. I took comfort in that.

It is difficult for me to look at pictures of Aria from Christmas morning knowing now what I didn’t know then. I still haven’t been able to watch the video we made and I cry every time I look at these photographs.

Despite that, we had a wonderful Christmas and Aria seemed to be improving. Her pain was still prevalent but her range of motion was increasing and she seemed less irritable. We decided to go ahead and call our doctor the day after Christmas to have her seen. We wanted an objective opinion of what might be the cause of her pain and discomfort. We wanted make sure we weren’t missing anything and that she was in fact getting better. We were able to get an appointment for the following morning, December 27, 2007. The physician’s assistant gave Aria a thorough examination and concluded that it was more than likely a muscle strain. Although he gave us a referral for x-rays, he didn’t think anything would show up so we didn’t pursue that and instead went home. Over the next several days, Aria continued to improve until finally she didn’t seem to have any pain whatsoever. It was great and she was back to herself again, until…

Friday, January 11, 2008 Aria out of nowhere started complaining that her left arm and shoulder hurt. I could think of no reason for this pain and it was weird. I was worried and exercising a bit of denial that it could be something really serious. Regardless, I wrote an email to 3 of my nearest and dearest friends, whom I call “My goddesses.”

January 12, 2008
We didn't go sledding yesterday, which was a huge bummer. I was totally looking forward to it. I don't know if Aria is going through some kind of growing pains or something. She's complaining that her "arms are bent". This time I have no idea what the matter is.. I can't trace back to any incident or injury that may have tweaked her arms. She says its both her arms..When I touch her shoulders, they hurt..when I touch her elbows, they hurt..when I pick her up under her arms, that hurts. She's all over the map with her emotions related to it too..I find this really do I address it and take her seriously without feeding into it if it’s partially a 4 year old attention getting thing and how do I downplay it without ignoring her because something definitely is off. She can be a whiney 4 year old but she's not a manipulative 14 year old! She's just not herself and that is the indicator to me. Poor thing woke up yesterday in tears and she was like that most of the day! poor thing.. icecream helped and watching the wizard of oz..also playing ponies with her and a nice hot bath but other than that she was a puddle!
Here's hoping for a much better day!!

Over the weekend it was the same old story. Aria had moments when she seemed as if everything was fine and others when she would wake up in the middle of the night screaming. I told Doc that come Monday morning, if she wasn’t better, I was taking her back in and having her seen by our regular doctor.

Monday morning rolled around and Aria had not improved enough for me to let it go. Once again she was more irritable and fussy. She just wasn’t herself at all. I called our doctor’s office and was told that our doctor could see her on Thursday and just as I was about to arrange that appointment I said, “You know what. That’s actually not going to work for me. I’m really worried about Aria and I need her seen today. Is there any other physician available today to evaluate her?” I remember my heart pounding in my ears and suppressing tears as I said that. I was told that another doctor could see Aria later in the afternoon. I took the appointment and later that evening I wrote an email to my sister Sue.

January 14, 2008
Things here are just ok. Poor sweet Aria is dealing with something.
At Christmas time, her right shoulder was really bothering her as you
well know but Friday she started complaining that her left shoulder
hurt. She is now walking around with her left arm bent as if it’s in a
cast..she is totally protecting that arm and shoulder. Poor thing.
She is SUPER sensitive...can hardly pick her up without her
crying..We went to the doctor today..of course during the exam she is
able to straighten her arm..put it over her head and
I agreed it was a bravado thing..a few times she flinched so the
doctor knew something was up but at least ruled out a dislocation,
bone spur etc..Sooooo, we had some lab work done...she had to be
poked 3 times in order for them to find a vein. Poor thing...Then, we
had x-rays done of her shoulder.. I am so trying not to worry about
the really scary shit like bone cancer or rheumatoid arthritis but
there it is in my worry center! We're hoping it is just a weird
manifestation of growing pains...joint swelling etc...but still, poor
thing.. the kids were amazing..true champs...all of them. We were
doing the doctor thing for over 3 hours! They were wiped by the time
we got home but still I could not be more proud of them. It is such a
stressful thing because one minute she is fine playing "jokes" (this
is a little game she and I play..this is her idea of telling me a
joke; Hey mom, "I'm going to eat the poop!" to which I die of fake
laughter and respond, "Aria, I'm going to eat the pee snow!" It
deteriorates from there!!!) So, one minute we're telling jokes and
then the next minute she's whimpering and crying in pain and the next
minute she's playing with Rianna..Up and Down and Up and Down!! Dr.
Robinson, a colleague of our doctor was actually reassured by
that..She took that as a sign that something is very real but isn't
so consuming that she can't distract herself. I was reassured with
that perspective. So, basically the work we had done today was all
the Rule out stuff..Please keep her in the light! I arrived home and
was consumed with thoughts of the millions of unknown mothers the
world over who are dealing with very real tragedy at this very
moment...very real illnesses..very real injuries..very real
injustices..that are happening to their children. I feel so deeply
for them and at the same time feel so incredibly grateful for our
health and well being. I feel incredibly humbled too.. Life is such a
fragile, fragile, fragile gift!

I'm chilling with a glass of wine, waiting for Doc to get home. He
drove over to Seattle today and should be home soon. There's weather
going on out there so as soon as he's home, I will breathe a huge
sigh of relief!

I'm still processing our conversation.. I have to say, that I am just
so amazed by you and Jim. Truly, Doc and I admire you so very much
and look to you as our mentors in so may respects and for so many

Love to you! ~j

The following morning, Tuesday January 15, 2008 at approximately 10:45 am, Doc called me with news that in an instant shattered life as I knew it. I was no longer the same person and I was thrown upon a foreign path that left behind everything I thought was real and forced me into a new world of “What Is.”

Before it all began..

These are some pictures of our life before the road took a turn that we never dreamed possible.

In the beginning...

I don’t think it is an exaggeration to say that every parent worries about ‘something’ happening to their kids. I know I did and still do even after something actually happened! I can’t tell you from where this voice of anxiety comes but I’m becoming more and more certain that its origin is fear. I can’t think of a single time when I felt stressed and anxious that I wasn’t also afraid of something. That may appear obvious to you reading it since it appears obvious to me having just written it but if fear is such a transparent foe, why then does it remain so formidable? I’ve often wondered, why is it that I know I’m afraid and actually despise feeling afraid and yet don’t do much to understand the cause of my fear, its birthplace within me and its ever expanding root system? Why am I so comfortable accepting my fear as a state of being? I’m beginning to develop answers to those questions but not because of any serene soul searching accomplished beside a babbling brook with tinkling bells in the distant wind. No, my search has been the result of sifting through the embers and shards of an old life while being forced to accept a new one that is ironically fragile and fortified.

You see, I’m on a journey that has forced me to face fear and I never realized just how many I had. My path is not a straight one and there has often been a new fear discovered at every turn. I’ve never been so frightened in my life but there’s a miracle that is also entangled in mystery that has become tangible. I have the strength and the power to face virtually anything. I might have told you at one time that I knew this about myself. I might have said something brave like, “Well, I’d do it if I had to. I suppose I could face my fear. I’m tough enough!” But these words were always uttered in the comfort of only being intellectually afraid, never having to actually confront a fear head on, figure out how to disassemble it and then smash it to smithereens. I’ve had to do that countless times now and every single time, every single fear is daunting and intimidating but I’m doing it. I’m facing what scares me to my very core. But the weird and curious thing is that I’m not getting rid of my fears once and for all even after I’ve identified one and played cat and mouse with it a while. I’m not quite able to banish them completely but I am able to tackle them and keep them down for a while. Will I ever be free from fear? Now that is a question!

The light of this journey has shone me glimpses of what that might be like. I’ve come to believe that facing a fear and naming it is certainly the first step to ending its choke hold but I haven’t quite figured out the rest. I’m still searching. My journey hasn’t ended.

It was December 21, 2007 when the very first hint of something wrong came into view. It was 3 weeks later in January 2008, my daughter, Aria, was diagnosed with leukemia. Cancer happening to one of my kids was my greatest fear and it remains a powerful source of fear for me to this day. Every time I saw a bald kid, who I assumed was going through some kind of chemotherapy my heart sank into the pit of horrid anxiety and wonderment. “How do those families cope?” “God, what’s happening to that kid?” What would I do if one of my kids was dealt a life threatening illness?” “What would happen if one of my kids died?” “What on earth would I do?” “How would I carry on?” “How do those people carry on?”

I’m one of those people now and all of those questions and more haunt me still even though I live, eat, breathe, sleep and smell cancer every moment of every day and have been doing so for quite some time.

I can’t tell you how many times people have said to me what I used to wonder about others in silence, and that is, “I don’t know how you do it!” I’ve learned to interpret that comment as both a genuine question as well as a sincere expression of admiration that is also enmeshed with a pretty good dollop of fear. When I hear people say that I go back in time to all the times I saw someone dealing with the ravages of cancer, for example, and I would spiral into a dark place of worry wondering, “What if that was me? What would I do?” So when people voice their wonderment and awe over how I’m doing it, I can’t help but hear whispered in the background, “Julia, I want to know everything you’re going through but at the same time I don’t want to know.” This is the voice of fear saying, “You don’t want to know because it is beyond your wildest imagination. It is beyond me -fear and well within some other realm that has no name. You want to know because you think by knowing you’ll feel more prepared and less afraid. You’ll create a list of ‘here’s what I’d do if something happened’ scenarios that you can keep tucked in your pocket at all times…just in case.” I remember doing that and thinking that. I think it is a perfectly normal thing to do and something we all do from time to time. Don’t we? The real question, however, is why we continue to do it when it isn’t a successful strategy for squelching fear and empowering the mind-body spirit to face what it must. I’ve learned that to continue engaging in the exercise of ‘if I worry about this enough I can make it real to my mind and therefore convince myself that I’m prepared and fearless,” is a complete waste of time and energy.

There’s nothing wrong with learning about other peoples’ experiences. Stories of trial and triumph are inspirational and that plays an important role in empowering our psyches. The capacity of the human spirit is infinite and we do well by learning and watching others show us just that. However, the problem is that sometimes we think about what other people are having to endure and how that would affect our own lives if the tables were turned that we ignore what’s happening in our own lives. Maybe it’s because we’re too scared of our own circumstances or perhaps we’re too bored or uninspired that we find other peoples’ lives so interesting to watch and unfold. I find that tragic because it doesn’t enable one to acquire the tools necessary for the transition that happens when fate comes knocking with a wretched hand.

Let me tell you something. It, whatever it is, will never be what you think it will be. Life is so incredible that way. The good or the bad that you imagine will always pale in comparison to what actually happens, so I’ve found that paying attention to what is actually going on infinitely more helpful than trying to conjure what could happen based on someone else’s experience.

Still, there are lessons to be learned from another’s experience that may not be perfectly applicable, but there are pieces of similarity that can be incredibly helpful. What’s often lacking however is direction and explanation. It’s one thing to say, “We ought to let go of our fears.” It’s something else entirely to demonstrate how that’s done.

It was never my intention to write in sometimes gruesome detail about my process of discovery and conquest while facing the Goliath of fear that resides deep within me. That sort of just happened. My focus was very simple. I had to tell a number of people the same information about what was happening to Aria and to my family. I accidentally discovered that through emails I could share the details of a horrific medical experience with ease and peculiar healing. My parents, Doc’s parents, my brothers and sisters, Doc’s brother and sisters, friends and extended family were every bit as blind sided with the news of Aria’s leukemia as we were. Suddenly these people were hurled into this horrible well of fear, worry, dread, wonder, shock and helplessness. They craved information. Sending emails was an easy way to target a number of people while simultaneously keeping the phone lines open, which was critical during those early days. But in a matter of a few weeks, writing emails became a sort of therapy for me. I was given a number of journals upon which to pen my thoughts but my hand couldn’t write nearly as fast as my fingers could type so the emails transformed into a journal.

Initially it was scary to be revealing and vulnerable until suddenly I ceased to be afraid. I can’t tell you when that happened exactly. It simply became a matter of preservation. I had so many thoughts swirling and buzzing in my head that they became a real threat to my sense of peace and calm. I found that the more I allowed them to marinate, the more chaotic and anxious I felt. When I began weaving my thoughts into the emails about Aria, suddenly they lost their power over me. I was less anxious, less worried and felt more able to face the fear of the day. Hitting the send button was like releasing the stress and fatigue never to be owned by it again…at least for that moment. I felt emptied and cleansed ready to face a new day and fill my head with new thoughts and discoveries.

These are some of those stories, those thoughts and fears. Although this is grand sweeping statement, I’ve come to discover that even though this is a tale about journeying through pediatric cancer, it is really a story about you and me and what it means to discover who we are and how we are all connected in the spirit of our humanity.