Ten Stubby Digits, Ten Chubby Toes

Sometimes putting our thoughts to paper (or screen) can be a challenge. Even as a "writer" you can be at a loss for words that truly convey the depth of your message. Sometimes, even when you find those words they can sting and leave your heart feeling achy and empty, or maybe even brimming full, both can prove to be painful.
So, while I'm wrestling with a blog post it brought me back to some words I wrote for the Destiny City Film Festival's Story Alchemy.
The theme was "transformed by compassion" and empathy, and while I felt ill equipped to write a story, let alone read it out loud, I accepted the challenge and the opportunity to represent Creative Colloquy while also answering the call to share my words. It only seemed fair since each month I ask the same of others.
So below is my story~keep in mind, it was written as a guide to be narrated out loud and not necessarily grammatically proper. But I'm revisiting some tough times and it brought me back to this moment.

This image makes me chuckle. Because this is what I look like when I talk and I'm clearly anxious. But I did it.

Most parents will tell you while awaiting the arrival of their child that it’s not the little person’s gender that matters. Or even whether or not they inherit Grandpa Joe’s eyes or Aunt Becky’s curly locks. It’s about those tiny little digits and a happy, healthy baby. All of the corny things you hear from parents are absolutely true. We marvel at the shift of priorities. Under rested sporting tee-shirts dabbled with spit up, food and maybe even poop we manage to proclaim our pure state of awe and belief in love at first sight. However, the cosmos are forever striving to obtain a sense of balance and with all the awe inspiring moments filled with joy and happiness there is a grim flipside to things.

 Parental bliss is always, inevitably interrupted by horrifying worry, heartache and sometimes an utter and crushing sense of failure.

 I experienced all of the above about 5 years ago. My daughter now 17 was born, happy, healthy, all of those wiggly fat digits we’d hoped for and proceeded to grow into a beautiful young lady. Well adjusted.  Smart. Kind. Conveying a dry, wicked sense of humor that perfectly combined her dad and I. At twelve years old she became moody, achy and fatigued all of which you can pretty much attribute to puberty. With what seemed to be the usual side effects of becoming a woman she was stricken with a rash on her face. Her already rosy cherub cheeks and across the bridge of her nose became blotchy and irritated. After weeks of avoiding the sun, changing or trying face lotions, oatmeal scrubs and dietary tweaks we finally took her into the doctor.

 It was only after an assault of questions and blood tests that she was diagnosed with Systemic Lupus. Systemic Lupus, for those who don’t know is an auto immune disorder. Essentially her body was attacking itself from the inside. Waging war and inflicting her with not only a visible symptom like the malar rash but also rheumatoid arthritis.

 When we received the diagnosis I could only describe my initial reaction as shock. Though that doesn’t even really place it in the proper box. I’d always strived to be the Wonder Woman Mom, we hadn’t always had it easy but I strived to remain the sturdy foundation for my children to turn to. Stable. Comfortable. But with my daughter’s diagnosis I felt shaken and battered. Naturally living in this modern age I turned to WebMD to discover all I could know about Lupus.

For anyone who self-diagnoses or researches their own ailments knows this is a horrible idea.
WebMD informed me of all the symptoms that I shirked off as signs of puberty were in fact Lupus related. It went on to tell me that Lupus was not curable but Treatable. And as I read the laundry list of complications my tough mom façade crumbled.

 Not only were the complications heart wrenching to imagine. Even in a best case scenario manageable ailments like arthritis sting. I was hardly equipped to consider possibilities like organ failure, miscarriages in women and even death. Is any parent?

 I’ve always been naturally a bit cynical, not always jaded but suspicious of the inherent good in people that folks always insisted upon. Is this ‘good’ a tangible thing, can it be measured or seen or even experienced? I believed for a large part of my life that it could not. It simply did not exist. Not to say that people couldn’t be good but rather, they just tended not to be. And with that I approached every interaction, even the most superficial, wary of people. Initially my daughter’s diagnosis did not change this.

If anyone has ever visited a children’s hospital they know what I say is true. It’s a high tension atmosphere. Parents and children sit, emotionally drained and exhausted. Tired of tests, waiting rooms and traffic. Tired of being the proverbial Guinea Pig in which to tests different combinations of potions and elixirs. Sick and tired of being sick and tired. Earlier when I said Lupus was “treatable” that’s exactly what I meant. Treatable. A simple term to really mean a barrage of medications you cannot pronounce. An ammunition of pills that all have their purpose. You take one for this and another to fight the side effects of the last. All of this, the sitting in Seattle traffic, circling like sharks to find a minivan parking space, followed by a wait to be told to wait so they can sit you in another room to wait some more……It’s all quite infuriating.

 Some days my daughter would just shut down. She’s not the whiny, woe is my type but a weight would lie heavily on her shoulders. Her doe eyes would tire. I witnessed with a heavy heart how all of these physical ailments were affecting her psychologically. That, more than anything, left me feeling lost. I had no sound advice to guide her. It could not be fixed. It was only treatable. There. Was. No. Cure. 

Though all of this certainly help my disdain for my fellow human kind it left me feeling increasingly isolated……until the day I started to really pay attention.

It’s easy to get wrapped up in your own head. Mindlessly moving thru the motions and not really being present. Not ever really investing yourself. So many of us are guilty of doing it. But then there are those who take a moment to really look at you. It can be in a simple gesture that contact, that moment when the eyes connect and rather than look away hurriedly in discomfort or shame they stop and see you. Of course this isn’t a phenomenon exclusive to the children’s hospital but it was there I really began to take notice. Those little knowing glances. All of us there, whatever affliction had hold of our children were there together. Of course it wasn’t just those minute empathetic affinities. It was larger than that. Acts of compassion through connections. A hi-five from Hector the lab technician will instantly make my daughter grin. A nurse during my daughters 3 day hospital stay was one big work of compassion. Silly socks pulled up to his knee, scrubs tucked in, afro and hipster glasses conveying a character of a man who liked to have a good time would come to the window on the isolation ward and play games of hangman and adorn the window with works of art.

Before being admitted into said isolation ward, her regular doctor came to visit. Dr. Hayward is a mother as well, we’ve witnessed each other progress through a pregnancies in 6 week intervals. Each of us getting a little rounder as she inspected my eldest. She has always had a tender touch and maternal approach with my daughter but when she came to check in on Moira and talk to her about the hospitalization even though it wasn’t her shift, it was that moment that made my heart soften as tears filled my eyes. That was a big one. She wasn’t just doing her job. And she wasn’t exactly a friend. She didn’t have to be present and yet there she was comforting and affectionate. Easing this horrific hurdle, if only a little by her presence.

Tiny embers cared to will ignite bonfires of flame and warm whole families and provide light in the darkness.

These kernels of compassion strengthened my daughter’s heart. The weight though still there is a little lighter. She’s a warrior. Stronger in spirit than nearly anyone I’ve encountered and conveys compassion to me daily. Our lives woven together, I may never fully understand how her illness affects her. Her journey is her own. But she has instructed me to be less cynical and soften the edges with small gestures of empathy. She’s the one with an illness and she shows ME empathy.

Through this life experience I’ve learned to be more open hearted. Though I’m not so sure I buy into the whole “inherent goodness” within all humanity. I have seen people who care to their core. Whole heartedness shared to anyone who will have it in instances where empathy and community connectedness is the only thing that will get us through it all. Maybe not unscathed but enlightened and better for it.