Sunday, August 23, 2009

Aria's eyebrows

July 26, 2008
Subject: Aria’s eyebrows

I don't know what it is exactly but lately Aria has seemed to me more beautiful than ever. Both Doc and I have commented that she has lost the 'steroid look'. Her face is no longer swollen and her belly isn't as distended as it once was. She looks like the old Aria and she certainly acts like herself. It is wonderful to have her back firing on all cylinders again. Her energy is high. Her stamina is great and her personality reflects the goofier, noisier, sillier Aria than we've seen in quite some time. What a joy to feel like we have Aria back. We have Aria back! Aria is back! I hear myself say that in all manner of ways as if I'm mentally trying to pinch myself, locking the memory of her as she is safely away in some part of my brain. It is such a reassuring experience being with her now, watching her, enjoying her, playing with her and at the same time I am challenged to face the inevitable changes that will once again come with each and every month for the next few years....and after that? Well, that truly is the unknown. I see that as the proverbial bridge that I'll cross when I get there. To my mind's eye, it is a rickety thread-bare swaying thing that I see far off in the distance. It is so far, the image isn't really all that clear. It ought to be quite something to discover its true form the nearer I approach. It is easy to turn my attention back to what is in front of me at this moment and that is my beautiful, precious, innocent, sweet, wise Aria. That bridge, that scary crossing, will wait.

I know I began describing Aria's beauty in terms of what I can see. So much of what used to define Aria's physical beauty is indeed back and there is no denying that it is lovely. It may be hard to understand but through all of this it has been so easy to say, "Doesn't she look good?" as if I'm trying to convince myself that things are still 'normal' implying 'less sick.' But in the darkest shadows of my mind I've heard myself scream at the same time, "Look at her! Look how's she's changed! Look how sick she is!" The conflict between letting go and holding on has been a challenge. The many physical changes Aria endured went right along with changes in her personality too and I found this emotionally difficult to reconcile. I've grieved those changes as part of learning to accept the consequences of this process. Some times have been harder than others but with the passage of time has come a level of deeper acceptance and confidence. With this acceptance and confidence I can hold on to bits and pieces of what I knew of Aria before her cancer. I'm seeing those pieces now and they offer me such hope, such light, such joy. What I see of her draws my attention to what I sense of her and that is what defines her beauty.

You all know how hard it was for me to come to terms with Aria losing her hair, which has by far been the most dramatic change. I tussled with redefining beauty as if that was the core reason for my sense of fear and sorrow. I berated my over-indulgent sense of vanity and I wrestled personal demons wondering what emotional tidal waves my psyche would endure if the tables were turned. I think I've finally figured out what the process of hair loss has meant to me. In a word it is 'sickness.' When I imagined Aria's hair was falling out, I thought she would be sicker than ever and facing her illness to that degree was almost too much. What has been a complete surprise is bearing witness to her astounding health and resilience now that she is completely bald. She isn't sicker than ever but actually better than ever. I never imagined the process this way. I had convinced myself that Aria losing her hair meant grave illness and for some people it is. For Aria, however, it has been a different matter entirely. You couldn't have told me that this was probably how it was going to play out, though, a few months ago. It was something I had to experience in the moment and I am so grateful that I was mistaken in my fear. The conflict of knowing she is getting better but seeing her without hair like a poster child for cancer still takes my breath away sometimes but at least I'm not spending energy wondering what she'll look like bald. I'm used to her hairless body and I marvel at and even envy her creamy flawless skin. She is absolutely adorable. Her grace and confidence is so astounding and in some ways the fact that she can't hide behind the identity of her beautiful hair makes her even more interesting to me. She stands before me completely raw and without a shred upon which to mask herself. She is unaware of her courage and her strength and that is what makes her so empowering. You have no idea how honored I am to be with this exceptional and exquisite child.

It is worth mentioning that Aria has not lost her eyelashes, which would be the envy of Michelangelo's brush or her eyebrows with their light and feathery penciled arches. Now that her face has regained its pre-cancer shape and aura and now that her spirit has had a reprieve from the shackled torments of chemotherapy, Aria's beauty is almost blinding to me in its brilliance at times. It is as if her face in its resumed form and stripped of all distraction allows her full spirit to shine through her eyes. There are moments when she and I put our foreheads together, touching noses obscuring the looks on our faces and I can see into her eyes. I stare deeply and I take her in. She is a part of me and at the same time a complete and separate entity. I often want to fall into the well of those stares and dance in the joyousness of her spirit residing there. The beauty I sense is all encompassing. Time, for a moment, stands still. Aria will typically curtail the enchantment by spitting at me or some other such nonsense. She is, after all, 4 years old!

The other day, I was staring at her eyebrows and they made me think of something. I have in our front garden, called 'the welcoming garden', a glorious rainbow that my dear friend, David Repyak made. This large sculpture was first placed in our pasture one day this past winter. There, against a pastoral canvas of white snow, appeared a rainbow made of colors of tulle gently blowing in a frigid breeze. David had created 'Aria's Rainbow' and in honor of her and our family he walked methodically step by step around this rainbow creating the shape of a heart. I wish I had been in the frame of mind to take a picture, but alas, it remains only in my memory. He has since moved Aria's rainbow to the welcoming garden where it greets anyone driving by the farm. It is the most beautiful heart-warming piece of art we have displayed outside and it fills me with happiness from the top of my head to the tips of my toes. I noticed that the shape of Aria's eyebrows match to perfection the shape of her rainbow. I find this coincidence beyond words.

It is fitting to say that the magic of a rainbow, the beauty of a rainbow and the pause one feels when seeing a rainbow fully characterizes Aria. She is indeed a beautiful soul full of magic and when you encounter her there is an overwhelming desire to pause taking in the beauty you sense coming from her. It is a joyful and humbling experience to be with her and to be a part of her view. Lately I've been able to rejoice so deeply in having Aria's rainbow constantly present in my sight. I sense hope. Sometimes the hope seems as fragile as the tulle material itself and other times it seems as solid at the branches and rocks keeping the rainbow in place. Regardless, Aria's rainbow gentle nudges me to come away from the wondering of all the unknowns to the certainty of her present being. My spirit is filled with the beauty and magic of Aria and her rainbow. ~j

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