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 Hibernation militancy- mindset was put to the test because Brady had a basketball game this morning and said, “Mom! I started your coffee! I’ll see you at 10:15”… So I bundled up like a fashionable lumberjack and trekked out into outside hell because Brady ❤️❤️ They won! Basketball is very stressful FYI. 18-17. We celebrated with Sweet Jenny’s and since I was already out, I made a left to the bay instead of right Home. Bay is frozen with seagulls walking across. A clear view to the lighthouse and so I walked…. for a long time because you can’t run in my pretty but warm black patten leather snow boots I love so much…. I didn’t sleep last night and now you/we know why… 4 children died from DIPG since the New Year; 2 sets of twins separated physically within a week because of DIPG….and this stealth faith and hope I have is *so* tested…. how is it possible to cry so much and not die of THAT as well? I have had private conversations with so many of you about this every single time and each time it’s like the first time. This will never get “easier”. You cannot get “used to it” nor harden your heart. Each child gone is a light that has dimmed our world… made lesser; a dagger to the heart. To *my* heart. Each one opens a forever 4/6/15 wound that runs deep…. “Some wounds run too deep for the healing. J.K. Rowling, Harry Potter and the Order of the Phoenix (Harry Potter, #5) But I #keepon “There are some wounds that one can heal only by deepening them and making them worse….” Villiers de L’Isle-Adam Worse because there is no cure… yet. There is no consistency… yet. Stability NOW. But I vow to be a part of the change that makes this a thing of the past and false in the future. I *know* the change is coming. I just know like I know it’s too cold here. “Our deepest wounds surround our greatest gifts”. Ken Page So I am one cashmere hair away from a Mrs Roper style “I’ve given up on life” moo moo I found hanging in my closet that goes well with fuzzy socks…. . A soft grey, beautiful, warm blanket of love, but trust me, I realized quickly I am borderline especially when paired with a Franciscan monk/Star Wars Sith style hooded ( yet fabulous!!!) wool sweater…. consume not consumed. I’m not lost yet…. I heard a song today that said “Living in the memory of your song”… and I looked it up because I heard “ Living in the memory of your SUN”. And I chose that. I choose to live with and for and because of the memory of your sun….a Unicorn sun; bedazzled and fierce.

Fortune Cookies

Although the 2017 calendar says otherwise, I woke up today knowing it was *really* Easter. Easter 2015. Every April 5th will always be *our* Easter. Easter in my heart and soul; I woke up feeling the memories in my very core. Her favorite holiday, although there was not a holiday she didn’t insist on celebrating,…

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…

Golden Unicorn

This #gogold September, I had the  priveledge to write for  The Children’s Brain Tumor Project  Fall 2016 edition #poweredbyfamilies #cbtp  http://www.childrensbraintumorproject.org/wp-content/uploads/2016-cbtp-fall-newsletter-final.pdf .  Something I am grateful for, because I give her YELLYVOICE™ weight and power. Always. This is *everything* I am.  I am also  honored to  be a part of this amazing community of energetic force…

Home

Well, it’s official. We are moving. Most of you have known we were looking, but not too many know how this came about. 5 years ago this month, Hurricane Irene devastated our cul de sac and surrounding area  in Wayne, NJ. So much so, that talks of hypothetical buyouts became reality. Our beautiful neighborhood, my…

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…