Thursday, March 21, 2013

He lives to live.

As a baby bird, she sits snugly deep inside a nest. The closely woven, intertwined branches create a safe wall circling around her. The bird's feathers will begin to fluff and grow. Bravely, she will eventually hop over the small twiggy wall of the nest to venture out onto a branch. Perhaps the sun warms those newly acquired feathers and she experiences a gentle breeze as it rocks her timid wobbling body back and forth.

As the bird spends more time outside the nest, watching as others float and soar through the air, it's not long before it's her time. Quivering on a shaky branch, I imagine the bird closes her eyes and just leaps. Wings flapping wildly, uncoordinated and frantic. Just barely staying afloat as she makes frenzied motions through the air. As her stability is shaken and you think she's just about to fall- it happens. Her wings begin to move in a purposeful motion. Now looking strong and graceful, gliding through the air- she feels the rhythm and finds balance, the peace.

The bird learns to fly- to soar through the clouds. And she will never be the same again.

While adapting and learning to live in this way, a stray storm will sweep through from time to time, throwing off her rhythm. Leaving the bird flapping her wings wildly in fear of falling. But she will find stability once again, even in the midst of fierce wind and pouring rain.

I can relate to this. Can you? I think this analogy could be used to describe so many different circumstances in life. Have you been working through your own storms? Have you learned to fly? To really soar?

Wyatt's fight for his life could easily be described in such a way. As well as our life parenting a child with a terminal disease. I wonder though- as the Mito is taking over is our son falling, as you may initially interpret the analogy, or will he really be just beginning to soar?

There has been so many times that I've felt much like that bird, flapping frantically, trying so hard not to fall. Focusing on trying not to fall. So scared to fall. But then, in those moments, I learned to relax and just 'fly'. There are storms- big, scary storms in our life- that leave me frantically trying to stay afloat and so close to falling. But I do eventually find the balance, the rhythm, the peace.

It's no secret, we are not a typical "hospice family" and don't quite fit into that way or lifestyle fully. We drive the team a little crazy with our unorthodox end of life ways. But I accept that, as we are following not only our heart, but more importantly our son's.

After speaking of the intricate and delicate balance that Wyatt's body requires at all times, I was asked by a hospice team member, "With all this (as he motioned to Wyatt's attachments and elaborate set up), what do you think keeps him going?" I wasn't sure what type of answer he was expecting at first, but I continued to think about that question for hours later. Wyatt is filled with such a huge amount of acceptance, understanding, tolerance and a spirit that exudes love so genuinely. Even through all that he has experienced, he looks forward to each day through innocent eyes. I think he lives to love. And he loves to truly live.

He lives to live. And it's my goal to do everything in my power to help him to continue to live even as he's dying. For the moments between the storms are the moments to fight for.

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  1. so beautiful! Thank you for reminding, especially today. It was not her ending, but rather her beginning!! ♥

  2. I think he lives to love. And he loves to truly live.


    Perfect and perfectly put.

    xo Wyatt xo

    (and his family, too)


  3. Thanks, Ashley. I don't think a person could gain this wisdom through a normal life. To appreciate the trueness of life that Wyatt has-what an honor to get a glimpse.