FGioma is 5 years old

brain tumor

Today is the five year anniversary of Eric’s first seizure that eventually led to his brain tumor diagnosis.

got glioma?  he does.

will it ever go away?  it won’t.

fglioma?  every day.

I wish there was a better word than anniversary to describe the passage of time surrounding events that we must acknowledge and recognize, but not celebrate.  Time marches forward. It is so important to mark those events that change our souls, even the ones that break our hearts, because it reminds us that we can survive.  We have survived.  We will survive.

Today has been looming more like a deadline to me.  Whether ultimately accurate or not, I can’t forget the first night in the ICU room, hearing the words “4-7 years”. We have heard a lot of other numbers….we have also seen time frames play out far too quickly.  There is simply no way to know what the future holds, and that is the single most difficult part of this journey.  There is nothing known, from time frames, to treatment, to symptoms….nothing.

Hindsight is an amazing tool into the unseen workings of the soul that are invisible to us in a given moment.  While everything we (mostly I) have shared has been 100% true, most of it has been a bit too shiny and polished to really do anyone any good but myself.  In many ways it has been selfish writing.  Writing to reassure MYSELF that there is a purpose in this journey and that I am approaching this in the right way.

The untold story, and the future story, is to dig into the why and the how I am happier in this moment than any other times in my adult life.  Much of this has come from yoga, can’t lie.  From yoga I have learned to quiet my crazy-ass mind, let go of all forms of peer pressure, mean girls and keeping up with the Jones’, and try to understand that I am absolutely in control of how I live my life – learning to choose to be happy versus waiting for it to happen….  I practice every day living in the moment – not the past and not the future.  Being present is the greatest gift the tumor has given me, and my yoga practice, teachers and community have put the light on this blessing.

I suppose I am a scientist at heart because I am constantly trying to understand the “why”…..Why does yoga work? Why am I ok?  Why do some people thrive and others barely survive?  What have I done right and what have I done wrong?

It may be as simple as one word.  Love.  Choosing Love.  Showing Love.  Practicing Love.  Being Love.

I’ve seen it work.  I have sat with the lost in our society – the broken, the poor, the homeless, the sick.  Many do not remember the impact of an monetary gift I have given them. A website of resources or a gift of technology is important, but not life changing.  It is not life changing because it is nothing without a human connection.

Over and over people respond to and appreciate one thing.  Love.  This is without exception.

The loving gift of time.  The loving gift of concern.  The loving gift of friendship. The loving gift of honesty.  The loving gift of authenticity.  The loving gift of our shared humanity.

People respond to Love.

And here is the other truth.  No one can give Love to another without fully first Loving herself, her life, her truth…..completely.  It doesn’t work otherwise.  And maybe that is why the world is so sad.  We have forgotten how to Love the most important person in our lives – our self.

“The great compassionate souls always take their overflow of sorrow and turn it into love.” – Elizabeth Gilbert

Below is a piece I wrote awhile ago about our journey…. it was, ironically, published this morning on kindness blog…..in case you want to keep reading….



My husband’s {inoperable and incurable} brain tumor has been the greatest blessing I have ever received. Let me say it again – his brain tumor is my BLESSING. I know this with 100% certainty – I have never been so full of joy and happiness. Right here and right now. Oh, let me clear one thing up from the start. I am not in denial nor am I deluded. If you can let that suspicion go, the story means more.

We were sailing right along until…we weren’t.

Two amazing kids, happy and healthy, a ridiculously lovable yellow lab, a house on the best street in my favorite neighborhood, a career I loved, loads of friends and family – all that was missing was the proverbial white picket fence.

Trish Rohr and family

Life was easy shmeasy.


There are always annoyances and challenges to consume our minds and to divert our attention. It’s the rub for us all, isn’t it? It takes a jolt to see what’s right in front of us. I surely got mine.

I will never forget my pivotal moment – the one that woke me from my despair and truly brought more light into my life that I could ever have imagined. Sitting on our sofa together soon after the biopsy of the tumor, Eric and I had tears streaming down our faces (I am sure I had snot running down my chin, too- I am an ugly crier that surpasses all other ugly criers. Trust me. It would make you want to look away)

We both were thinking the same thing….

Struggling to choke out the words…

We are so blessed.

We were beautifully overcome by gratitude for what we had. We had love and support and spiritual nourishment and physical nourishment and kindness and concern… We had it all, and we were finally able to see it.

Never again, not one moment, has it been about what we don’t have or what has been taken away or what may happen in the future.


My joy, my life will never be perfect – it never has been. The difference now is that I don’t work towards an unattainable {and undesirable} goal. I thank God, the universe, the f-d up piece of DNA in my husband’s brain…. for giving me life.

We handle the f-ing brain tumor (FGlioma has become our mantra, our power) as the most trivial and meaningless aspect of our life. It doesn’t have power over us – in fact we have sapped it of all of its power by laughing at it, ridiculing it, using it for change and good and happiness, sharing with others our lessons through this journey….. it is weak and we are strong.

I need my children to know that life is beautiful

in the face of adversity and, no matter what, we get up.

It has been five years since I heard the words

“There is a mass in your husband’s brain…we need to get him to the Neuro ICU”.

These have been the five most difficult and yet rewarding years of my life. I have failed many times. MANY times. I’ve failed in how I handle my emotions, my husband, my children, my relationships with friends and family….. I have spent time being busy – so very busy – just to stop thinking. I have spent hours wasted on Netflix, escaping my reality. I have ignored even the simplest of tasks like returning a text or phone call. I left my job of 12 years and felt the overwhelming terror of filling the hours of the day by myself. I’ve cried. I’ve raged. I’ve been irrational and snarky and pissed.


I am so thankful for my family and friends who love and understand unconditionally; for everyone following this journey and offering thoughts, prayers, and intentions; for a sense of humor that is the ONLY thing that makes life remotely tolerable; for my sacred yoga practice and community – my teachers and role models who have given me gifts that are truly magical; for my blessed and privileged life that allows me to follow my heart and passion.

trish rohrAuthor Bio: Trish Rohr is a writer :: avid reader :: nonprofit founder :: yogi

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Also see Rohr Rockstars.

Pope Frances – He Had Me at Little Black Fiat


I have been on a Pope binge.  I am absolutely mesmerized by this holy, joyful man.  I must admit that I have spent more time immersing myself in #PopeinUS than I would have predicted.  As a #masseverydamnweek Catholic, the Pope comes up from time to time….

I vividly remember when Pope John Paul II (or JP2 as my beloved Father Frank would say) died.  At the time my kids were 5 and 3 1/2  and we were in the throws of transitioning from the Family Mass (i.e. Mass Chaos) in the school cafeteria to the service in the church. There were several full-color, HUGE pictures of JP2 placed around the outside entries to the church as well as inside.  My beautiful 3 1/2-year old boy would yell, literally, every time he saw that picture of the old man in a bright red cape, “He’s Dead!”  Over and over and over again. Boy oh boy did he embrace the Pope’s passing. www.imperialteutonicorder.com

We eventually moved on to the crucifix and Jesus … prompting a slightly more embarrassing proclamation at random moments during the actual Mass….chubby fingers pointed straight ahead, connecting the dots – that guy too, the one on the cross, was also…dead.  Awesome.

I fell into a bit of a Pope vacuum after that, certainly hearing the rumblings and goings-on as any good Catholic would, but not really seeing the magic unfolding.  Until Tuesday.

He had me at Little Black Fiat.

The joy and excitement from my go-to channel for binge watching any “Breaking News”, CNN, has been unprecedented.  Wednesday morning Chris Cuomo was giddy, at one point yelling off camera “Papa Francesco! Papa Francesco!”to the passing motorcade.  Wolf has been less arrogant (and clearly less knowledgeable as he was pointed out to NOT be Catholic several times so far by his colleagues – hilarious) and Don Lemon has been, well, almost tolerable.  It is refreshing.  We are witnessing history AND it is completely devoid of negativity.  None.

His smile is contagious.  His warmth awe-inspiring. His white cape refreshingly simple and carefully replaced each time the breeze folds it over….

It was then that I noticed…him.  The handler.  Of the Pope.  The Pope’s handler.

 The Pope’s Gary Walsh

A few steps to the side, head slightly bowed, full devotion to all things Selina… err …Pope.  The Papal Cape folds over, he is there, smoothing it down.  The Pope is thirsty, he knows it and has a glass ready and waiting.  A small whisper here, a dismissive hand gesture there…. As Gary once said to Selina Meyer, “I’m your calendar, I’m your Google, I’m your Wilson the volleyball” (confused?  well, that is because you are out of the loop and not watching an incredibly funny show on HBO – VEEP.  check it out and catch up)


I had to know –  who IS this guy and what, exactly, is his job?

Monsignor Guido Marini is his name.  Being the Master of Papal Ceremonies and Liturgical Celebrations is his game.  And it is NOT his first Papal Rodeo – Marini held onto his job even through the Benedict – Frances transition.  I suspect Pope Benedict provided more opportunity to express the flashier side of papal tradition.  It is rumored that when Frances was first introduced as Pope he was presented with the traditional fur-trimmed, red cape.  He then turned to his Gary and said, “Thank you.  You may wear it if you like. The carnival is over.”

True or not, I know one thing.  Monsignor Guido takes his job seriously just look at his face.  He is a no-nonsense Gary.  He rarely smiles.  He did falter in NYC when Bishop Dolan bestowed the regal title of a “true New Yorker” on the Pope during the Prayer Service.  Tsk, tsk, tsk.  Maybe there was an inside joke there between the him and the Pope….

There has to be more to this mysterious man with the eagle eye and smooth gestures of command.   I can’t help but wonder – is he Pope Francis’ “bag-man” just like Gary Walsh?  While I actually haven’t seen the bag per se, whose to say it isn’t under the cassock of this devoted and serious man?  Hand sanitizer, Chapstick, crackers….what does the Pope need?  Perhaps a spare zucchetto? Extra incense? A Metro pass?621170_Vatican-Armenians.JPEG-0cd6

The Pope’s Gary is the careful orchestrator of the pomp and circumstance and the keeper of all tradition.  I wonder what the other Monsignors say behind his back?  Is he seen as the consummate Papal suck up in the halls of the Vatican?  He is a Monsignor, that’s true, but now what?  Where do you go after being the Papal Cruise Director?

There is one thing I think I do know – Papa Francesco is a stand alone kind of guy.  Sure, he has a Gary.  But he doesn’t need no stinking Gary.  Just like he doesn’t need the red shoes, the red cape, the big apartment….how refreshing is that?

So Bravo Pope Francis! Your time here thus far has been worth every minute.  You have blessed this country with a firm message of tolerance, love, humanity, humility and respect for all.  I’ll be tuned in for the second half of your journey – and this time I won’t be so distracted by your Gary.

“In a word, if we want security, let us give security; if we want life, let us give life; if we want opportunities, let us provide opportunities.” – Pope Frances – Speech to Congress – September 2015

war stories and a field of dreams


My daughter is doing a literary criticism of a novel for her 10th grade World History class, All Quiet on the Western Front.  I have been so long removed from the beauty of reading and interpreting  literature I had almost forgot how compelling it is to pick apart a story to get to the core, the heart, the soul of what the writer wanted you to know.  It is taxing work, it is a skill to be built, and it is something that requires a level of thinking and connection and interpretation and self exploration that I am not sure we (I) do enough.  It is too easy to hear the story, read about the characters, take in the action and be done.  But there is more to the story – there is always more to the story.

This particular novel explores war and its impact on the psyche of men.  Deep.  It has also be labeled an anti-war novel, a depiction so graphic and disturbing it should do nothing but to inspire us to end all war.  It’s so damn interesting isn’t it? War.  Violence.  Human failings.  I fall into the CNN time suck trap every time…the suspense, the intrigue, the unknown…. I want to peek into the darkness, darkness I pray never comes close to my family, my life, my peace.  I watch in fascination, disbelief, horror.  These are men (and sometimes women) orchestrating drama on a world-wide stage.  The story is certainly one to be told – for the victims – but I know we do not pay enough attention to what these stories should be telling us.  I don’t pay enough attention because it is easy to watch the drama unfold and then change the channel.  And it is the changing of the channel that keeps us from the message…..

I am coming up on the 5 year anniversary of the biggest plot twist in my life.  It is also the 10 year anniversary of an event that I did not, for reasons I am still figuring out, twist my plot enough.  I changed the channel.  Probably because I could, like most things in life.  It is the events that have no other channels, those are the ones that give us opportunities to go deeper, look more closely, find the meaning to the story.

My plot twist happened in the bleachers at a little league baseball field…my greatest moments since have happened watching those same boys play for the next 4 summers.  What little league has given my family, the opportunities to find the good stories and life lessons in so many ways, was worth digging deeper.  When we faced making some serious decisions about treatment, we chose to see what our story was teaching us, and it led us right back to those little league fields for a summer never to be forgotten.  A summer of life-long friendships, of love and support, of winning and losing (mostly winning because we knew how to lose as winners), pride and accomplishment, sportsmanship…. It was as if we were all there to find the greater story – the one that happens on a baseball field when 9 boys play a game that is capable of creating suspense and excitement on the scale of (and exceeding in so many ways) of any sensational story on CNN.   This game, this league, this channel….it can only be played on the peace of a baseball field.  It is the anti-war, the anti-plot twist….. 9 young boys making peace more interesting.  THAT is the channel I want to watch.

Today at 3 pm the US Little League Champions (not only from my home state of PA, but also from little ‘ole York County!!) will take on the International Champions from Japan.  You don’t have to love baseball or Little League to appreciate this story…the insurmountable odds that brought these boys to this stadium in beautiful rural PA, the teamwork that MUST exist to be a ball team of this level, the lessons and love that come from playing a game the right way, for the right reasons.  Tune in.  Look for the story.  Give this pure and peaceful story the attention we give to the war stories in our life.  I can guarantee what you uncover is better.

Elvis, Kasie and one hell of a Death Week.

Nashville Elvis Impersonator Chuck Baril & Little Elvis Gabriel Jarrett

Moving to Memphis, TN at 23 years old was an eye-opening experience in many ways.  Sure, this “Yankee girl” had spent some time in the south – Charlotte, Charleston, Savannah…. but those places are the “east coast” south.  A fair amount of outside influences have soften the edges, rubbed clean the old and replaced with some shiny new parts.  Still genteel, still outlandishly hospitable with unbelievable food, yet somehow softer.  More open.  Breezy.  Very different from THE South.  THE South feels closed off.  Amid all of the wonderful southern traditions there is a layer of old pride.  It is stubborn, stifling, mysterious.  Always a bit mysterious…..

We arrived in Memphis during The Firm era.  The parallel of our arrival – a young banker joining the ranks of the long-standing financial institution – was never lost on us.  It wasn’t long after arriving, and already being called a damn Yankee by a very serious older {gentle}man, that the ultimate pop culture, mind-blowing event began to unfold right before our eyes.

Subtle at first, it was more of a hidden secret that slowly unfolded into the greatest people watching spectacle I could have ever imagined.  I had already seen a lot – Beale Street, Tunica Mississippi casinos, hole in the wall barbecue joints …I had even seen Graceland.  On a “regular” weekend.

The celebration of the death of Elvis takes over Memphis for an unbelievable amount of time.  10 days.  TEN DAYS.  The most loyal fans humanity has to offer come into the city happy as a puppy with two tails.  They are ready to pay homage to The King of Rock and Roll in ways you can only imagine. Sure, Elvis impersonators and blue suede shoes are the imagines that come to mind, but trust me when I say that seeing an entire family – babies through the granddaddy – pour out of van dressed in various forms of Elvis takes it all to a new level.

Elvis sets the standard in celebrations of the dead.

Never in a million years would I expect to have my own death week…my own surreal remembrance of someone who I call The Awesome Girl for so many reasons.  Every August, always aligned with the start of the school year, I find myself going back to 2005, tracking 7 days on the calendar that forever changed my life in ways I am still understanding.  I am religious about it.  My Death Week is marked Day 1, Day 2…and there is nothing in the word that keeps me from remembering, as best as I can anyway.   Truly, for the trauma of the events that unfolded, I remember far more than I ever thought I would.  And thank GOD I do because it is my way of honoring a woman who I loved and admired deeply.  Some say I torture myself emotionally, reliving details, walking around on the verge of tears….but how else do you handle the loss of a BFF?  At 32.  With a 2 year old.  And pregnant with Baby Elizabeth.  Who had a husband and a career and friends and family….. It is not torture – It is an honor.

It has now been 10 years.  Nine times I have walked this memory path with Kasie’s family and friends.  What I have realized is that the memories of that week are sacred to me.  What the week brought to Phil, Kasie’s parents and family…..it is truly incomprehensible.

I know now that losing Kasie holds more for me than just a tragedy and a yearly death week.  Much like Kasie there is beauty and love and magic….there is loyalty, humor, and just a bit of insanity in these memories.

This story, Kasie’s story, has been sitting on my keyboard just waiting to be shared, for years.  When I allowed myself to take the risk and share my family’s journey on a blog, it was only from drawing strength from Kasie.  She was a risk taker, a believer in herself, a cheerleader for her loved ones and friends….she would have said to me “Do this girl!  It will be AWESOME!!”  And I am starting to believe she may just be right.  But perhaps it isn;t my story alone….perhaps it is OUR story that should be shared.

Tonight we are going to celebrate the memory of a remarkable woman – someone who lived life with enthusiasm, believed in the pure gold value of family and friends, loved her son the tater tot to the moon and back…..someone who deserves more than anyone (even Elvis, King of Rock and Roll) her own Death Week.  Maybe we will come in sundresses found at Marshall’s for a song (ok, maybe not Bobby…wait…that would be hysterical!!)…..we will most certainly all come with love and daisies in our heart.

It’s time to talk about Kasie and the lessons she gives freely to all of us every single day.  She deserves nothing less.

Love you girl!

Back to School :: RR Style

Certain times of the year are absolutely worth the price of admission on Facebook.  These yearly milestones make scrolling through all of the vacation pictures of painted toes poised in front of a blue ocean, crazy political rants, exercise recountings and food selfies well, (more) tolerable.   Shiny faces and shiny shoes, new backpacks filled with clean paper, inky markers and bright pink erasers.  Usually pictures snapped on the front porch or driveway, bright smiles ready to tackle a new year.  One of the few times I would say more is more in terms of sharing.  Ok, and new babies.  New babies need to be shared. A Lot.

Nostalgia creeps in for me… I spent 15 years waiting in my shiny clean classroom to greet the kiddoes in those pictures.  I can promise you that even quasi-grumpy 8th graders feel the excitement for a fresh start.

And that’s what it is, right… a fresh start?  A chance to be a new you.  An 8th grader – 7th grader left far behind.  Maybe there will be new friendships or better grades, or a chance to sit at a different table in the cafeteria.  Have you ever put your hand up to an old school TV screen and felt the tingly zingy field of electrical …something.  (is it static electricity?  yikes!  I feel like I should know that…)  That feeling, almost intangible but still there, crackly and alive…that’s the first day feeling at school (in case you have forgotten or haven’t had the privilege to be an adult looking in).  It is fleeting….8 hours max.  The next time the clocks read 8 am the feeling is different – more normal.  It’s special because it doesn’t last….but it does leave an imprint of hope for the next time….the next fresh start.

Last week I spent the evening at the St. Jude Affiliate Clinic at Novant Hemby Children’s Hospital (lordy – what a cumbersome name) meeting with families of pediatric sickle cell patients and helping everyone get excited about going back to school.  I don’t have the words to describe the size of the hearts of the people who work in this special place….I am so humbled that they have allowed me and RR to stand with them in service to these very special families and kids.  Every sickle cell patient was invited to come and fill a new backpack with brand new school supplies.  I deeply appreciated my peeps who donated school supplies – for many of these families what they received last week will be the only items going to school with the kids on Monday when CMS begins.

It is not only about the tangible pencils and erasers….it is the hope that comes with a fresh start.  It is letting the kiddoes and parents know that there are people cheering them on.  Parents were given sheets that explained sickle cell and its special needs to be given to the new teachers, and we talked a lot about making the school year a success from day 1.  Guess what was also there?  That tingly zingy feeling of going back to school….  I saw big smiles, talked about favorite subjects (science of course), and lots big plans for the year…. I can say it was probably among the best hours of my summer.

September is both Pediatric Cancer Awareness as well as Sickle Cell Awareness Month – we couldn’t be more excited to celebrate all of our ROCKSTARS!!!

While still under construction, we would love you to visit http://www.rohrrockstars.org and keep up with the amazing kiddoes we support and share in our commitment to nurturing the minds of all children who face an extended illness so they can walk confidently and optimistically through their journey as life long learners.

Let me not die while I am still alive (Hebrew paryer)

I’m never quite sure when the days will come when my body and soul simply needs to cry….I am pretty sure I don’t sit down and write when they do.  Today I am going to type through the tears…

Nothing is wrong, yet really everything is wrong and somehow, unbelievably, all is right.  I am raw and vulnerable and affected by so much going on in the world and my life and it became time to take a day and simply cry over it all.  It doesn’t happen often, it usually takes days if not weeks to build, and I have learned to be kind to myself and let it wash over me when it needs to.  It is one small way I have learned to truly take care of myself over the past four and a half years.  Before I would have tried to stop the tears, berated myself for lingering too long in a sad space, pushed and pushed to hide the emotions, tears and puffy eyes.  No more.  Life IS this hard.  Not just for me but for everyone.  I have learned to sit in this place of being overwhelmed and sad and confused.  Just sit.  Let it come.  Breathe.  Because I also know it will go in time.

How can I even begin to put into words my world and all the overwhelming pieces….I’m not sure I can.  Ironically, the part of me that is most likely to be the source of tears isn’t.  And a lot of it isn’t even bad and is in fact great…and great, when contrasted with hardships, can often be an emotional and overwhelming place.

I continue to be truly humbled, and puzzled, by the gifts the Universe delivers to my door each and every day.  I just chuckled because right now my front porch is literally full of wonderful school supplies that thoughtful, kind-hearted teachers gathered and passed along as the school year wrapped up.  Actual gifts entrusted to me to be passed on to the children they are reaching out to.  On my porch…

I finished a 5 month yoga teacher training that has been nothing short of life altering.  And I thought I was doing pretty good in the enlightened and living department…..oh how far I have to go.  And what a beautiful path to walk with beautiful souls all around me.  That gift, the one I took a chance on 5 years ago to lose a little bit of grief around the middle, has turned out to be my holy space.  Talk about no words…..yoga, my yoga space, my yoga soul mates, my yoga teachers….saviors in the greatest sense of the word.

I have been working as hard as I ever have in my life to realize my dreams of changing lives through education.  Doors have been opened, opportunities presented, proposals made.  I have more possibilities in many ways I never dreamed possible.  I have also seen doors closed.  I continue to marvel at how often my passion and desire and committment to big changes can be viewed as “too much”.  Maybe it is way the world trudges along even when change is so desperatly needed.  That fear of being too big.  I can think of three times in my life that another’s words or an experience could have slowed me down for good.  Once presenting a graduate paper to a group of professors (my professor signed me up in the wrong category – clearly not my peers!) and I was torn apart both during and after the session.  I could have stopped right there and believed that I went too far.  That my ideas were wrong.  Sure, there was embarrassment and some tears…and then a whole lot of laughter.  The second experience as working at my first “real job” and having my supervisor, at every turn, take time to let me know how little potential she believed I had.  The best comment was when she told me I simply was not a “big picture thinker” and never would be.  Ouch.  20+ years later I still stew over that and would go toe to toe with her any day on big picture thinking….  My last experience came just a few weeks ago in a meeting sharing my passion to change how we look at education, and specifically how we can address some very serious problems through work in healthcare organizations.  I was on fire that day – articulate, passionate, dedicated.  I was not intimidated by the accomplished man across the table in the big office on the top floor.  I approached this meeting as his peer (which I very much am, despite whatever notion he brought to the table that day).  Actually I am pretty sure he did not feel the same about me.  I suspect, in retrospect, he was expecting a PWW (priviledged white woman) who managed to get a meeting through connections and was going to politely ask for a bit of support for her little project at the local hospital.  We were not on the same page.  After my passion and excitement wrapped up, his response was to tell me. “You have a lot of audacity walking into my office like this today.”  Could. Not. Breathe.  In fact I was stunned for days…..I could have been silenced.  I could have toned things down. I could have tried to tame my audacious nature and passion for children.  Instead I chose to go, hard, in the other direction.  So some tears today come from a lot of hard work towards a goal I am committed to achieving.  Audacious?  Maybe.  Going to happen?  Hell yes.

I have had a huge heavy grieving heart as well.  Life is so hard and I ache for those I know who are having to dig deep for strength to rise each and every day.  Some have lost mothers, others fathers.  Cancer has taken far too many too soon and is making families battle in ways and in spaces I know they could never have imagined being in.  In the past I would have tried not to take on these emotional packages, thinking they didn’t belong to me.  They actually DO belong to each and every one of us.  We should feel for others.  We should cry when people are raw and open and hurting.  Just as we rejoice in others success (let’s do more of that too, ok?) we should feel the pain of other’s journeys.  Wrap that energy around them – even if you don’t know them.  Offer your prayer, your intention, your energy, your presence, your tears….offer that to the world.  See what happens when that compassion is allowed to grow in your heart.  So what if you lose a few minutes to the tears?  Those tears may be creating space for something new in you….like flowing water that shapes the Earth, let’s look at our tears as ways to shape our own hearts.

My own tears are gone now.  I feel lighter.  I sat with my joys and my heartaches today.  I grew.

If you have not read Sheryl Sandburg’s latest post on FB I URGE you to read it.  It was one of the many things that made me step back today. give myself space and time and ready myself and heart for the journey of tomorrow.

cece the rockstar and the cost of making an imprint on someone’s life … we can (and must) afford it

smiling (always) with her dad


by my estimation that is what it took for me to begin my imprint-making last week.  outrageous for a single scoop of ice cream and a chocolate sundae?  maybe.  the outcome, the imprint, is worth so very much more.  (what’s an imprint….read here)

a few weeks ago i was re-introduced to a family i have known for years.  just like the rest of us except for two things – sweet kiddoe cece had cancer 2 years ago and now her dad is in his own fight against the very same disease.  right. totally unfair.  crazy strong family.

a second grade cancer diagnosis  of juvenile granulosa cell tumor- stage 1.  clicking back through the family’s journey beginning in march 2013, i remember admiring their strength and dignity…the support and love they have is immense.  it turns out that dear sweet cece, 2 years after surgery to remove her tumor, has a little bit on her mind.  she is healthy, thriving, smart, funny….. but she needs something else.

it’s a lot to carry on a little ones shoulders (and add in the anxiety and worry about her dad…geesh).  i know from our family experience that, no matter how great the outlook and how normal life can be, all four of us are silently praying all the time. that is more than childhood is meant to be. i do believe, with 100% of my heart and soul, that these journeys, although tragic and hard and unfair, can be opportunities for all of us to become better.  i never intended to create a nonprofit.  it was not the path i was on.  but when that cancer diagnosis hit, and i looked at my two babies, more than anything i knew i needed them to know that we can guarantee more good will come of this than any bad.  cancer will never ever win because we are better and stronger in our souls. my mission in life shifted to ensure that my rockstars, my new friend cece, and all of the children who face any type of extended illness, have a chance to live (a child’s life) and love (themselves) and win (by becoming the best they can be).

her favorite part of the pediatric floor - a quilt with inspiring messages of hope
cece’s favorite part of the pediatric floor at sloan kettering- a quilt with inspiring messages of hope

cece is in remission – clear scans (whoop whoop).  i met her at school for our ice cream date and immediately hugged her tight as if we were old buddies.  we both knew this was true on some level i think.  cece goes to the best school i can ever imagine, and it just happens to be the school my children attend and the one where i spent 12 years as a faculty member.  maybe i am biased.  let me tell you that at the heart of this school is the common mission that everything is done with the purpose of what is best for each and every individual child.  every child is known.  THAT is what i call an outstanding education.  THAT is what every child in this country deserves.  THAT is what we should be demanding from every school.  THAT is what i am hell bent and determined to make happen through Rohr Rockstars.  (y’all if you knew what i know about how our schools “deal with” children facing extended illness, you would be getting fired up as well!!!)

so cece has a lot going on in that beautiful head of hers and she wants to be heard on a few items.  she is not different.  that is number one.  she is not different.  maybe that she loves chocolate would be number two :).  oh and that she will be a famous actress some day.  after those two very important items she wants to share that cancer has not changed her.  she is cece.  that’s it.  not cece who had cancer.  not cece who went to ny for treatment.  not cece who was diagnosed in second grade.  she is, quite simply, cece.  bright.  (she HATES that people think that somehow cancer made her not smart anymore….ugh.  heartbreak.)  loving.  creative.  energetic. a book lover (fantasy is her preferred genre).  she is…cece.


i didn’t have to do anything other than eat ice cream, listen, understand, laugh …. that was enough.  a special person just for her, just cece.  the beginning of an imprint – on both of us. we parted ways with another hug, a plan to stay in touch, and a big braces filled toothy grin with a few chocolate sprinkles as a reminder of our time together.

want to learn more about rohr rockstars and our mission to nurture the minds of children facing extended illness?  visit us here at http://www.rohrrockstars.org