Rockstar Ronan: Waging Wars

The universe has a special way of helping us break through the walls of grief. It sends us a gentle breeze that turns us in a direction to face the howls. Sitting with the iPad and looking for a particular movies' name, which I still can't remember, brought me to a Taylor Swift song...."Ronan's Song"....which in turn pulled me in, feet first, breech and wailing to RockstarRonan.com

Ronan was a strikingly beautiful boy diagnosed with Stage 4 Neuroblastoma cancer. He passed away on May 9th 2011 in his mothers arms after an 8 month battle.  In her poignant blog, his mother recounts his life and his story with as much raw, uncensored candidness that I wish I could have expressed during our fatal fight.

I've spend hours spilling and poring over her site that mirrors every emotion I've had over the past 6 months. Wading knee deep through all the ugly, fucking scarring and anger that cancer can dredge up. The waves that I thought I had rode over, crest again and I'm watching the beautiful man I married get eaten alive while I'm screaming inside and out..."it's not goddamn fair".  Her description of the pain sinking and settling into your bones is nothing but laser sharp - it doesn't really go away,  it permeates your core through osmosis...setting up camp for good. A permanent unwelcome visitor.  

Instead of being strong and brave - crying alone in dark, cloaked parking lots - I wish I could have had just one person I felt safe enough to break down and sob uncontrollably with. But that one person was lying in a bed of morphine induced haze, wasting away while I sat beside helplessly watching and waiting for death to take him. I wish I could have so eloquently expressed the horror, fear and disbelief that consumed even my sleep.

Instead of thin smiles and feigned hope I wish, like Ronan's mom Maya, I had the strength to mount my soapbox, snot and all.  I should have taken off the army boots and climbed into bed, curled up spoon-to-spoon waiting for the end with him. But a good soldier never takes off her boots and we were at war.  I should have stopped trying to fix everything and conceded defeat.  But not trying meant giving up. I should have been softer. But soft would have given way to a dam burst of dreams. Now, there are no "should haves". He's buried and there’s no way to make it softer...fixed...different.

Ronan begged his mother to take him home. Two days before the decision by doctors that hospice was our best and only option, my husband  looked at me from his hospital bed and said "at least you get to wake up at home". The words branded wrenching guilt into my soul. I've turned and tumbled them over along with countless possibilities but the truth is the care he needed was 24/7 monitoring of his tumor-driven delirium and pain. The truth is I didn't want our 11 year old to watch his father die. The truth is I still cry over leaving him nightly to wake up at home. The truth is he died without me there, probably alone with a nurse finding him cold and gone at 5:45 in the morning. The fucking truth is I have to live with that.

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fuck. cancer.

For those of you who haven't followed, let me begin by telling you that I lost my husband, 46, to cancer last year after a mercifully short battle with Glioblastoma Multiforme.

It was singly the most brutal time in my life watching the beautiful man I married get eaten alive by this angry, festering disease. We did our best to bring a quality of life to the few functioning days we had but as you may know there is no happy ending with this type of cancer.

We were blindsided by the lightning speed at which our lives were torn apart and now I am left to redefine, reinvent, and reassess.

 How do you return to normal when you now have ringside insight into the delicate window and fleeting nature of it all. How do you wake up every day and face a world that no longer includes your list of hopes and dreams for someday?

You fight.

 Like you fought the cancer and refused to give up right to the last breath....You fight to make a difference. You fight to bring meaning to the insular everyday of cold coffee and rush hour traffic.

I can't, I won't, I refuse to go to a place of complacency again. If all this has taught me anything....I need to honor that fragility of life and depth of grief that only comes from love.

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here is little Effie’s head

e.e. cummings penned one of my favorite pieces reminding us of all the "coulda, shoulda, woulda's that have gone before us and the road not taken.  The six crumbs reflect all the things Effie did not do throughout her life (with regrets?). 

Who among us can claim never to have made a mistake, missed a goal, regretted a choice...? 

Life life with no regrets, not wishing you had done something differently....this is not a dress rehearsal.  In the rear view mirror don't look back and wish you had let yourself be happier. 

embrace every opportunity you happen upon. be softer with everyone including yourself. put it all out there. now~

here is little Effie’s head
whose brains are made of gingerbread
when the judgment day comes
God will find six crumbs

stooping by the coffinlid
waiting for something to rise
as the other something did -
you imagine His surprise

bellowing through the general noise
Where is Effie who was dead?
- to God in a tiny voice,
I am may the first crumb said

whereupon its fellow five
crumbs chuckled as if they were alive
and number two took up the song,
might i’m called and did no wrong

cried the third crumb, I am should
and this is my little sister could
with our big brother who is would
don’t punish us for we were good;

and the last crumb, with some shame
whispered unto God, my name
is must and with the others i’ve
been Effie who isn’t alive

just imagine it I say
God amid a monstrous din
watch your step and follow me
stooping by Effie’s little, in

(want a match or can you see?)
which the six subjunctive crumbs
twitch like mutilated thumbs:
picture His peering biggest whey

coloured face on which a frown
puzzles, but I know the way -
(nervously Whose eyes approve
the blessed while His ears are
crammed

with the strenuous music of
the innumerable capering damned)
- staring wildly up and down
the here we are now judgment day

cross the threshold have no dread
lift the sheet back in this way.
here is little Effie’s head
whose brains are made of gingerbread.

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Shaken by Life

I love Leo Babuata of Zen Habits. As one on my favorite bloggers, I have followed him around like a puppy waiting for an enlightening morsel to fall to the floor. Leo never fails to elicit a deep sigh and reflection from his thoughtful  posts.

His last....It's a simple thoughtful train meant to deliver inspiration and eye-widening.

...And I am struck by the beauty of this world, and the fragile human lives struggling to make their way within it.

And shaken.

The pain and stress and anger and sadness and loneliness and frustration and fear and cravings and irritations that we will experience today … they are made up. We can let them go as easily as they arise. They are unnecessary, if we realize that we’ve created them for no good reason.

Instead, see the beauty in every moment. In every person’s so human actions. In our own frailties and failures...

This post hit me squarely upside the jaw.

Cancer is an evil beast whose sole purpose is to destroy.
Destroy Bodies. Lives. Marriages. Routine. Futures. Hope.

How do we stop and return fire to the "pain and stress and anger and sadness and loneliness and frustration and fear and cravings and irritations that we will experience today"  that seek to take no prisoners? 

How do we put life back into our lives when we are operating in commando mode? Everlasting Designs was born out of healing, positive energy. A way to express love, successes, ideas that feed the bright lights of the universe. 

How do I continue to feed that love machine when the lights on our street have gone dark?

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congratulations....it's a tumor

dear Body, don't you ever get tired of your heart jumping out of your chest? this disease is so mean I can't even believe it's real. surreal moves in slow motion.

this was so not in our life plans.

meet the man of your dreams, fall head over heels. have a beautiful wedding, have children, discover that this is why you love him even more, he is an good father.  our protector. our cozy blanket.

The MAN that makes it all right... look ahead to retirement, trips to mexico. he starts to be stressed, confused and we think lyme disease again, doctor says no, tumor, brain tumor. the worst kind.

life blacks out.

slowly the lights come back, but very dim. now instead of daddy tucking in the kids at night, mom is there explaining why daddy is too tired to read a story and can't remember your name.

now we don't know about next summer or next birthday or next christmas. now we have learned how to hold our breath. and when to exhale.

people asking what they can do. how can they help. when all we really need is a little bit of normal.

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