Saturday, September 5, 2009

I Spy...

November 5, 2008
Subject: I spy……

It was 6 am this morning. It was dark and I could smell the warmth of Aria cuddling beside me. The quiet stillness of the morning was gently breaking with stirring sounds, shifting blankets, creaking wood, and contented moans and stretches coming from Rianna's crib just a few feet away. Aria was wide-awake and playful.

"Hey Mama, I spy with my little eye in this dark room something purple that is a cup filled with water in the bathroom."

Trying with all my might to suppress a giggle that is about to erupt and shatter the dawn, I feign bewilderment, "Whoa, that's a good one. Soap?"

"Nope! Try again! It's something I drink from!" she says with delight.

"hmmmmm", I pause, "Oh, I got it, your cup!"

"Wow Great Mama! You're turn!"

"Ok Aria" I begin, "I spy with my little eye something in this dark room that is fun and stinky and small and your sister."

Aria,"UGHS!" with exasperation and says, "Rianna! ok, My turn!"

"Mama, I spy with my little eye, something that is white with a blue star that I sleep on with my head."

I practically cut her off and say a little too loud, "The sky!"

"UGH! NO! try again!" She's slowly and rather sheepishly raising and resting her head on a pillow with the case she's spied.
We both utter in a hushed discovered kind of way, "uh-oh Rianna's waking up! shhhhhhh..."

I say with a complete lack of confidence, "is it the pillowcase?!"

"Good job Mama! I'm proud of you! You're turn!"

Rianna is standing in her crib. Her silhouette makes me think of Phyllis Diller. She's making happy cooing sounds and I'm relieved to know that she's slept well. The sun is just beginning to rise. The quaking aspens that are just outside my window are beginning to glow like the rich smooth hue of lemon custard. I can hear Reo putting on his morning costume. I'm guessing that he's chosen his spiderman one.

Aria interrupts my reckoning, "mOm! it's your turn!"

I chuckle and say, "Aria, I spy with my little eye a miracle."

"Huh? What's that do?"

"Aria," I tell her, "the miracle I spy is You!"

She bolts onto her hands and knees burying her face in the pillow and wagging her imaginary tail. She is blissfully giggling! Rianna begins to jump up and down in her crib. She is squealing with joy.
This is how my day began......

It's Aria's Birthday!!!

October 26, 2008
Subject: It is Aria’s Birthday!

Today, Friday October 24, 2008 is Aria's 5th birthday. We are so thrilled and excited to be celebrating this day. This morning Aria is enjoying a movie and some quiet time. Later, we're going to the elementary school so Aria can have her school picture taken, which she missed a few weeks ago when she was in the hospital. After that, we are heading to the Oncology Clinic. Aria does not have an appointment but I have made a harvest cake for Dr. Trobaugh and all the staff there in celebration of them. Today, I am keenly aware that it is because of them that we have Aria still with us to celebrate. The depth of gratitude I feel is so immense that I can hardly breathe. I have been tearful since yesterday reflecting on my joy being able to celebrate Aria's birthday with her at the same time being profoundly sorrowful thinking of mothers and fathers all over the globe who no longer have their children with whom to celebrate. I have described it to several people now that it is a punch in the gut, suck the air from my lungs, and knock me to my knees kind of joy and sorrow. Thinking of people and the loss of their loved ones gently forces me to look deeply at what I still have and that process has been transformative in many respects. To say that I have 'a greater appreciation' is a gross over-simplification of what I feel and what I sense. Although it is true, it only scratches the surface of what I now embrace.

I had two very tearful conversations yesterday trying to explain what I was thinking and feeling. I called my sister, Sue, and poured the very contents of my soul and my heart out to her. I felt utterly conflicted; on the one hand wanting only to be happy and celebrate the moment with Aria; to know that she is alive and well and getting better every day. I kept asking myself, "Why are you inviting this sorrow? Why can't you just be positive and thankful for what you have?" I realize that because I know this sorrow on a very superficial almost imaginative level it is nevertheless what drives my appreciation to such a magnitude. I can imagine this loss on some level. I don't want to but I can and every time I go through my front door, I still walk through the vapored presence of death. I feel so deeply for those who have had a child die and yesterday it felt so wrenching to me that I found myself breathless more than once. Sue allowed me to share that emotion and that vulnerability. I'm sure it was tempting to say things like, "No, no don't cry. Aria is fine. Just think about how happy she is and what a wonderful birthday she is going to have." It may have been tempting, but Sue never said anything like that, which very unintentionally would have been dismissive. It also would have fed my sense of insecurity and that part of me that berates me for not always looking on the bright side. She was fully present and extraordinarily open to me in my moment of conflict. I could feel her words literally soothing away my anguish at the same time I felt enveloped by her loving arms. Thank you Susie! I love you so very much!

Shortly after my conversation with her, my dear friend and neighbor, Tata, (aka Laura) called. By this time I thought I had collected myself enough to be able to have a conversation without a flood of tears. I was mistaken. The moment I heard Tata's voice I burst into tears again. Tata has an uncanny ability to balance me. She and I are so alike in many ways and we're also complete opposites in as many ways. How we gel so beautifully is sometimes a mystery but I swear to you it is a holy mystery. Tata was instantly present to my woe and was quick to stoke the fire of my jubilance. She got me on solid ground with the present moment, the joyful moment, the thankful moment, and the loving moment. She got me laughing and playing so much so that it carried me through the rest of the day despite a few hard moments. This is something she does so well and I am utterly indebted to her! Thank you Tata! I love you so very much!

I think it is worth saying that the emotion of yesterday hit me by complete surprise. I hadn't been thinking about Aria in this way with any great depth. I hadn't been thinking about life and death per se so my thoughts of yesterday hit hard knocking the wind out of me. It was strange and unexpected.

When I picked up Aria from school we decided to go to a new Fair Trade store that recently opened in Spokane. I wanted to buy a few trinkets to put in her goody bags for her party on Saturday. While we were in the store, I noticed 2 women shopping and at one point we were all standing around the cash register area. I made a comment about how short their hair was to encourage Aria that many girls purposely have hair-cuts that are similar to boys. One of the women remarked that all her hair came out after being treated for cancer. This perked Aria up. It was then that this woman looked familiar to me. It turns out I took her gardening class about 9 years ago. We had a wonderful little exchange and she said to me that now that her treatment is done that she feels so thankful and grateful for having had the experience. She has gained an entirely new community of people that have so positively affected her life. She talked about how this experience has truly been a gift for her. I felt my eyes welling and I said to her, "I am so happy for you! I refer to your perspective as one coming from 'the other side.' "

I was gentle in my tone and sincere. She acknowledged my comment with a smile and a whispered, "yes." I then went on to say, "I'm in a place right now where Aria's cancer is not a gift." I was in tears at this point and I continued, "I've met some incredible people for whom I'm eternally grateful and thankful but the experience right now is still very difficult. I hope to have your perspective one of these days but I don't share it right now." She and her friend looked at me with such compassion and grace. She came over to me and hugged me and said, " You will someday...." "Someday" she whispered and then she left. I had turned my back to Aria and Rianna to spare them my emotion in the moment. I was, however, in full view of the poor woman behind the cash register who didn't know what to say. I apologized to her saying that I hope the exchange she had just witnessed didn't make her feel too awkward. I didn't know what to say and for some reason thought she needed to be spared this bit of reality. She looked at me and smiled. "Please don't apologize," she began, "I have no idea what you must be going through. I-I-I" she stammered, "I don't know what to say." It was my turn to smile and I did. I thanked her for the lovely store and for what she has brought to Spokane. The energy was much lighter after only a minute or two and all my sorrow vanished instantly when she said, "Would you like a chocolate? Would that help?" I burst out laughing! What a wonderful gift. I nibbled on some chocolate as I paid for my purchase and just stood there for a moment feeling like the shawl of Mystery was around me. Again, this overwhelming sense of gratitude for the goodness and grace of people became real to me.

We spent the rest of the day playing. I put down large pieces of paper for the kids to paint on. I took off their clothes and poured puddles of paint on the paper and let them have at. I didn't even bother with brushes. In no time they had painted themselves from head to toe. It was so delightful and resonated so purely with the joy that consumed me. Aria also received a wonderful horse puppet from my sister Sue that is the perfect companion to another puppet she has. Needless to say, we had a magical afternoon.

After school today, we are going to a movie store to rent a movie. This store also has a wonderful gumball machine that Aria loves. She has said for a year now that when she is 5 she will be able to chew gum. So we're planning to hit that movie store, get some movies and buy her her very first gumball! Talk about a party!!! We'll finish the day with a pizza party. Tomorrow we've invited several friends to come over and carve pumpkins, jump in a huge pile of leaves, ride around the pasture in our beater pick-up truck and have cake and ice cream. This should be a heap of fun.

Aria has wished to ride a pony, which is what she always wishes for. Aria's life, every single life, is sacred and worth more than anything my words could ever attempt to convey. As I close the curtain to this particular window, the tsunami of emotion I've had for the last few days has ended and has fortunately left no destruction in its path. Instead, what I see are glistening pools of hope, glorious avenues of promise, new paths toward love, reflections of sorrow mixed with gratitude, growth and one more step toward Mystery. So, I go. ~j

To be deserving

October 19, 2008
Subject: To be deserving

I've been thinking a great deal about what it means to 'deserve' something. With respect to people, the idea of 'deservedness' elicits a great deal of caution in me. There is an inescapable ring of entitlement as its companion that I abhor. I suppose the concept brings me back to the idea of 'duality' once again. Where there are positives and negatives; fair and unfair; good and bad, deserving and undeserving, light and dark, etc. As part of the human experience I think we are destined to sample the extremes of duality and I imagine that with maturity comes a settling-- a balance of sorts with these dualities no longer defining polar perspectives. It is my hope to reach a point in my development where the need for duality no longer exists.

When Aria was in the hospital earlier in the month, I came across a woman I've met a few times. I like her great deal. She has a certain lightness that is both genuine and refreshing. Her young daughter also has leukemia but it is of a high-risk kind and the fact that her daughter is still alive and doing really well is, in itself, a miracle. They were in the hospital for virtually the same reason we were. This mother was at the nurses' station looking through DVD choices that she could borrow and take to her room. We talked about where we were in our phases of treatment and how the girls were doing. We talked about those things that challenge us and make us question. We were connecting as mothers of children with cancer, as women and as growing friends. It was a warm being in her space.

She asked me if we were planning to participate in "Make-A-Wish". This was rather ironic because I had just recently decided that it would be something we would like to pursue and contacted them. She asked if we were planning to go to Disney World because she and her family are planning to go sometime next year. They are absolutely thrilled about it. She told me stories she had heard about the Disney World experience through Make-A-Wish and what she described sounded truly magical. I told her that our kids don't know that Disney is an actual 'world' and that, no, we would not be doing anything like that. I told her I wanted to do something that resonated with Aria's soul and that something is her love of horses; her true passion for them. I mentioned that we were probably going to go to some kind of Dude Ranch where Aria could ride horses and be around horses to her heart's content. I also told her about my reservations about participating in this kind of thing. I told her that when I contacted Make-A-Wish I needed to be certain that our participation wouldn't slight someone else, who may not have the same kind of resources that we have.

I'll tell you that the representative I spoke with was completely reassuring and lovely. I didn't expect to burst into tears while talking with her but I did. Her kindness and her reassurance was the key to unlock my emotions in that moment and it caught me off guard. I was telling this mother about my experience and as she nodded in agreement, she said something to me that I didn't know how to respond to. She said, "You know with everything we're going through and the kids have to go through, we deserve this." She believes it too. I don't think she believes it in an entitled kind of way but it definitely struck a chord in me that she believes it in an "it's only fair" kind of way. We're dealing with something so negative and so horrible that surely we deserve something positive and uplifting. I had nothing to say to her in that moment. I simply listened. It sounds so justified and reasonable. It sounds good and makes sense, sort of. For some reason, I visualized a sugar coating covering a bitter pill. I swallowed hard and was unmoved.

I've been listening and processing ever since with thoughts percolating drip by drip formulating what I'm writing to you now. Although I understand her perspective completely and I've heard it a number of times from different people, including the woman at Make-A-Wish, I remain unconvinced. I don't believe in the least that my family, including Aria, deserves a top-notch trip to some incredible horse destination. I don't believe this as much as I don't believe Aria deserves to have leukemia in the first place. This is duality at its best and this is, to my mind anyway, a perfect illustration of its folly. Neither example of deservedness has any basis in truth. Aria's leukemia is not Karma. It is not the result of her sins or the sins of her parents. In fact, that argument is so utterly absurd that I not only want to spit fire, I want to laugh until my sides split! I don't believe this is her cross. I don't believe this is God's doing with His point and purpose remaining a mystery until death. I think it is evident that I don't believe God is fashioned this way. Aria in no way deserves the fate befallen her. It simply is. But as simple as that concept is for me to accept, I understand that it poses a mighty challenge to others and their belief systems, because it doesn't require an explanation nor does it ask me to point a finger of blame. There are millions and millions of fates crippling the lives of others that are pointless at best. Our situation isn't unique on the grand scale of what it means to be human. She and we are living the human experience just like everybody else. We have beauty, brilliance and magic tangled with sorrow, fear, tragedy and loss.

Therefore the real question and point of reflection for me isn't whether or not this, i.e. a Make-A-Wish, is something we deserve. Rather, I'm pondering what to do about it. Now that I recognize and firmly believe we don't 'deserve' a Make-A-Wish, I'm still going to pursue it but here is where my conscience lies. I recognize that we live in an extremely privileged society and I will continue expressing and showing my gratitude for that fact. I recognize that a trip like this will most definitely bring our family some incredible moments that we'll remember forever and I will document them in great detail and share them with anyone and everyone. My hope is to advocate and contribute to this organization whose soul purpose is to bring magic to children and their families during excruciatingly difficult times. Wouldn't it be incredible if this took on a global scope? I recognize that with privilege comes a responsibility to pay attention to my extended global family that is far less privileged and whose suffering is great indeed. We all share this human experience and what we do, say, and think has a ripple effect that must find a settled place somewhere in the balance of positives and negatives. I recognize that my actions, my thoughts and my attitudes must find that balance within duality so that I walk through life with a gentle step and a heart and mind wide open.

It is with that thought that I realize that as human beings what I believe we deserve is nothing more than what comes with offering the best of ourselves. ~j

Aria is Well

October 16, 2008
Subject: Aria is Well!

It is hard to believe that we've been out of the hospital for a week now. Aria is back in school and feeling well!

It was a rough few days at home at first. Reo was ill, which made us anxious about Aria considering her immune system was so suppressed. We figured that whatever he had, she had already been exposed to so we simply kept our fingers crossed and tried to eat well and get plenty of rest. By Friday October 10, 2008, Aria was scheduled for a count check to make sure that her numbers were heading in the right direction. She had not had any chemotherapy medication since being admitted the Saturday before. I was not able to go with Aria to clinic because Reo was home sick, so Aria and Doc went. It was a very simple in and out kind of thing and we got her test results later that day. You'll recall that her ANC on Tuesday when we left the hospital was only 140. By Friday her ANC soared to 960 and all of her other blood work was either normal or near normal. This was wonderful news because Aria could now eat fruit, which is something she had been craving. We have baskets of apples that she was dying to bite into and wasn't able because her counts were so low. She also wanted to play outside but we had reservations about that too. We were told not to resume her chemotherapy until another count check on Tuesday, which was yesterday October 14, 2008. In order for her to begin chemo again, her counts need to be 1000 or more. Her lab results came in later that day with an ANC of 1064. In some ways this is an odd kind of thing to celebrate but it helps to think of it in terms of 'getting back on track.'

So here we are getting back on track, actually feeling quite 'normal.' Aria is such a typical kid in more ways than not and that aspect of her essence is rich and sustaining to me. Just the other day we were playing together with this magnetic fairyland that Aria adores. There are little magnet pieces in the shape of fairies, trees, wizards, household items, a king and queen and so on and so forth. We create a magical kingdom and go on wild adventures eating fresh pumpkins from the gardens, watching the birth of baby unicorns, who later nap and find themselves rescued by knights. It is all glorious fun.

Monday's game was clearly influenced by the death of Duck, our baby kitten that happened just the day before. Poor little Duck waddled a little too close to the gate where the dogs snooze and was chomped by Cat-Killer Buddy. He died while I was holding him. The kids were all able to say good-bye and with very little fan-fare that was that. So Aria and I were playing with the magical kingdom when Unicorn Mama suddenly went into labor.
"Mama, you say; Oh Mama unicorn, what beautiful babies you have!" ordered Aria.
"My word Mama Unicorn! What beautiful babies you have!" I said excitedly.
Aria proceeded to have the Mama Unicorn lick her babies and clean them up. There were 10 in all.
"Oh Mama Unicorn, you are being such a good Mama", I said.
Aria continued grooming her babies and taking care of them. It was such a glittery, fairy-like gentle moment watching her.
Suddenly Aria shouts, "Oh dear! one of the babies has just died!"
"Oh No!" I exclaim.
"Don't worry mom" Aria begins rather annoyed, "it is just getting ready to go to the Spirit world. He'll be ok."
There was a pause. Then Aria jumps a little surprised, "Oh Look! He's gone to the spirit world. There he goes! Bye-bye little friend!"
Again this was a sweet and serene moment until Aria then said, "Ok mom, now we can put his body in a bag and throw it in the garbage!"

I burst out laughing and it was the muffled sort of 'better not laugh in church' kind of thing that I just couldn't contain. Aria was irritated. For the life of her, she did not understand what was so funny. She was so matter of fact about it all because that's what we do with the bodies of our dead kitties. No ceremony. No fan-fare. Those dead little kitties go into a bag and straight into the garbage. I'm sure to her mind, why wouldn't we do the same thing with this glittery make believe baby unicorn. It was hilarious! That is Aria. She has such a profound awareness of herself that catches my breath. At the same time she has this wooden matter-of-factness about her is that both grounding and arresting.

We are enjoying these moments of wellness to their fullest. Aria will return to the clinic for a count check on Monday October 27, 2008 and if all is well she'll have her first spinal tap in a long time the next day Tuesday, October 28, 2008. I'll mention that that day is Doc's birthday! Oh Joy! Oh Celebration--Nothing like a spinal tap to go with cake and ice cream. This will be Aria's first spinal tap in this phase of maintenance treatment, which indicates that we've reached the 3 month mark. She will have spinal taps every 3 months for the duration of her treatment.

As I finish this little update, I can see Aria and Rianna playing in the living room. Aria is home from school today. She slept in late and has a cough still. My instincts tell me to be on guard and to keep her home despite that her counts are good. They're having fun and she is in wonderful spirits. Truly, she is a perfectly healthy appearing little girl who will be five years old October 24, 2008! It isn't like I have to remind myself that she has leukemia and that I forget she's still so vulnerable and fragile, but rather I can relax into the present moment of her. I can see in this moment that she is happy. She is well. She is full of energy and vitality. She is colorful and creative. She is mighty and insightful. She is glittery and bedazzling. She twinkles and because of that, so can I.