Times Gone By….

Should old acquaintance be forgot And never brought to mind? Should old acquaintance be forgot, And long, long ago And for long, long ago, my dear For long, long ago. We’ll take a cup of kindness yet For long, long ago. And surely youll buy your pint-jug! And surely I’ll buy mine! And we’ll take…

The Butterfly Effect

I’ve had a particularly hard time finding my voice and tone today. Sleep has alluded me all week with Easter and this massive date coming upon me. It’s DEFINITELY not a #yellyvoice I find nor have used. I am profoundly troubled and amazed and defeated??? that Lily LaRue has been gone 3 years. It feels…

papillon

On my way to the DC DIPG Collaborative meeting, driving 95 South is not something that comes easy nor do I look forward to it. The stomach butterflies are violent and vicious and my anxiety is at an all time high. It’s not the miles nor hours. This is a drive that we have done…

My Florida Pieces

Last year, today, I cry/drove away from my Northern Florida fellow DIPG mama and dear friend. I was a grateful, returning, visiting companion wanting to help; help them help their daughter, and in return? They helped ME. My goal was to be body guard for the door, chauffeur, if needed. Maid? I tried, but I’m…

Love for Lily 3.0

After a few days of rest and (still) emptying out cars and trunks of Love for Lily boxes, I have had time to reflect. I would be remiss and negligent in attempting to Facebook tag all of you who made Love For Lily – Annual Lily LaRue Foundation Golf Outing 3.0 the amazing and successful…

Strawberry Moon 2016

The summer solstice has always been honored and revered in my gypsy life. I come from a long line of European farmers, Vikings and warriors and gatherers;those that have traveled,lived and thrived from and of the Earth. I have always sought out #thewheelinthesky. The four elements of earth air fire water has been venerated annually…

Cancerversary is the WORST word EVER

I’m *so* stupid. How did I think I wouldn’t feel the full weight of an anniversary sucker punch. 2 years later… Freaking California Chrome. The year before was”Where’s Lil” ….Let me explain… Every year we traveled for a family vacation in Hershey Park PA that always coincided and included Kentucky Derby horse races. We joked…

Golden Mickey

It’s been weeks ( let’s be honest, months!! If not years) of grief driven anxiety and distress. We start grieving the day of diagnosis. I only know this in hindsight now.  The days before cancer and DIPG and all the days after are unmistakable and distinct. I live in an English moors fog- a heavy…

April 6, 2016

     My words will not come easily nor confidently today. I knew this. This is regular calendar day by any other standards except my own. A year ago today our Lily LaRue left  us. She was six years old. She was diagnosed with DIPG(diffuse intrinsic pontine glioma) on May 4, 2014. She fought for 11…

Leap Year

This 2016 February month is not the one I would have chosen as a leap year. The one with an extra day. I would have preferred having an extra day with my Lily LaRue in 2015, who would then, unknowingly,  leave this earth too soon ; leave my arms,  2 months later, April 6, 2015….

Butterflies in December and Orange Kings

I have always accepted Mother Nature and her gifts with wide open arms. As a child,  I innately knew and so witnessed what She could give and do. She has used all four elements and quite a few beasts to turn my head, or stop me in my tracks or open my eyes in the…

Brady’s Hope and Healing 

 I didn’t plan on writing about our weekend so soon until I came across 2 pictures on my phone. I wanted the memories and words I heard, spoke and felt to just stay with me. Within me. I wanted to just *be* with the moments… Be IN it. I need to process the conversations and…