Wednesday, November 18, 2015

The art of life

To go with the flow means to survive, at times, in our world.  Coping with change has become as unnoticed as your child growing by inches.  It happens right before your eyes.  It takes putting them in last years pants, or measuring them against the wall, or a long distance friend coming around and bringing that change to your attention.

It's no secret that change happens all around each and every one of us.  Sometimes, change is welcome.  A new home, new shoes, a new baby.  Sometimes, change is just the opposite.  It can bring sadness, worry, confusion, or even chaos.  Change can even bring heartache.  A best friend moving away, a diagnosis, a relationship shift. 

I let Livia taste the lasagna I prepared last night.  Jake had "fed" her via her g tube.  Most nights she will sit with us at the table while we eat dinner.  Before she had her tube placed, I thought that it would be cruel to eat in front of her.  We have found that it really doesn't matter that we are eating in front of her.  She would rather be near us, able to hold our hands if she wants.  That is how we eat most nights; one hand holding a fork, the other holding her.  Last night, I felt like she was reaching for my plate.  Her eyes seemed to tell me that she just wanted a taste.  So, I let her taste.  She willingly opened her mouth as the fork approached.  Her lips don't surround the utensil like it used to, but she tasted, and my heart felt.  I couldn't help but be saddened by the fact that she doesn't get to eat like she used to.  On the flip, I couldn't help but feel overjoyed and nurturing that I was fulfilling a "want" of hers.  I gave her several little tastes, all the while feeling extreme gratitude over the plate of food in front of me, the family sitting around me, and the awareness of how change is growing me.

When Livia was diagnosed with Sanfilippo Syndrome, we received the side effect.  That side effect came in the form of grief.  It's apparently always been around.  Early on, I didn't know it's name.  I didn't understand it or acknowledge it.  Today, that grief, it hangs out with me daily.  On the worst days, it feels as if I'm sleepwalking through the day.  No concept of time, actually living out my worst nightmare.  This sleepwalking feeling, it's like grief has surrounded me like a weighted, tightly stitched quilt from which I can't come out from under.  It's a horrible, sinking feeling that I don't wish upon anyone.

 Glennon Doyle Melton had the most perfect post on her Instagram a few weeks back.  I haven't be able to stop thinking about it because it's so true.

It is my experience that with extreme grief and change, comes extreme joy and happiness through all of these life experiences.  It makes you and me human.  Greif has challenged me to rise above, love deeper, engage more often, adventure daringly, and to take care of the most precious.  Grief has exposed my vulnerabilities, but brought those who can meet me right in the midst of it without comparing or fixing; but with loving, praying, and listening.  That is a great great gift. 

From the deepest hurt of grief, to the most perfect love, and everything in between; pay attention.  For me, letting it all happen and LIVing through it makes the art of life and the promise of heaven beautiful and real.    


  1. Your lovely post reminds me of a quote I like and have taped up near my desk: "Sorrow enlarges the capacity of the heart for joy."

  2. You move me to smiles & to tears!