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

$12.36

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.

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

i’m horrified….are you? :: PWW wants to know when we will actually DO something

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yesterday a very sweet friend of mine suggested an organization i may want to look at being a part of here in our city.  it’s a new organization with a lofty mission and one that certainly aligns with the work i am doing (and will do more of).  just in case anyone is a part of this group, let me first say – bravo for taking the first step.  nothing happens without a first step.  but i hope, more than anything, there is a second step.  because the second step is the dirty, ugly, messy HARD step.

opportunity.  what does it look it?  who gets it?  is it fairly distributed?

my thoughts…it looks like confidence in one’s self and abilities built on a strong education.

everyone gets it (but not equally and not with that confidence component).

it is not fairly distributed.  no, absolutely positively not.

here is my horror – a study out of UC Berkeley and Harvard recently showed that in the US, the likelihood of escaping poverty, dubbed upward mobility, is varied.  There appear to be pockets of “opportunity” scattered here and there.  But offsetting these, in my opinion, are the areas where the upward mobility rates – the chance a child has to escape poverty –  are LOWER than any developed country for which data are currently available.   guess who is at the bottom of the list when studying the 50 largest urban areas…..

1 San Jose, CA 12.9%  ….. 50 Charlotte, NC 4.4%

look at that again.  there it is…..beautiful charlotte.  proud charlotte.  pristine, genteel, hospitable charlotte.  OUR charlotte?

from this study there were five correlative factors that impacted social mobility opportunities – segregation (still?  ummmmm YES), income inequality (look around friends – this is obvious), local school quality (ah-hem), social capital, (haves and have nots….yep) and family structure (yes, this can be mitigated in my opinion)

wow.  ouch, right?  so basically if you are born poor in charlotte you are far more likely to remain in poverty ….

does that make you as sick as it does me???

i have read 100s of research-based and scholarly articles that connect various factors with different measures of success….i can confidently say that over and over again the results point to education as a key for a child’s future.  holy cow don’t we know this by now???  don’t we all believe this???  haven’t we all been told this by our parents and our grandparents??  we pick which neighborhood to live in based on school districts for goodness sakes or spend lots of money to ensure our children get it!

and you know why, right?  because we are PWW.  we aren’t escaping poverty.  it isn’t us.  we are there.  and we should be the ones doing something about it.

here is the dirty, ugly, messy HARD step…..  it takes action to bring about imprints (huh?  imprint?  you mean impact?  nope…. catch yourself up here)

i know and i have seen it is all about the power of connection.  human to human.  mouth to ear.  trusted partners.  hand in hand.  this is not some yoga-soaked ideal commemorated in a trendy font with a sunrise as the background.  this is real work. and real work will bring real imprints.

so what do we do?  find a point of connection.  make a connection.  build a connection.  maintain a connection.

and in those four seemingly simple steps are a lot of ways to go wrong….  but in those four simple steps is the power to do something to change what we know to be true.

i’m doing it.  i’ll keep telling you about how i am doing it.  i’ll share the stories that show the work.  and then YOU need to find your path.

let’s go.

impact? what about an imprint….

i’m not great at keeping secrets – especially big juicy exciting secrets like this one.  knowing the impact of today – the impact on the charlotte community, the patients at novant and families from other parts of the southeast – it was almost more than i could hold on to.

as i sat in the audience, i looked around and saw passionate, dedicated people coming together to bring the very best in healthcare to the youngest patients being served.  under the bright white tent with a picture perfect carolina blue sky, there were world-renowned pediatric oncologists, hospital administrators, and loving nurses, child life specialists and social workers .  we all shared a common mission, no matter what our role – we all aim to improve the lives and the futures of children facing cancer and other illnesses.

no one spoke about impact or numbers or funding.

the message was HOPE.  plain and simple.  HOPE.  hope for the future in pediatric healthcare; hope for families caring for a sick child; hope for the future for all of those affected by cancer and other illnesses.  the announcement of the partnership between st jude children’s research hospital and novant health is a perfect joining of two remarkable institutions, now aligned to bring the very best in pediatric cancer research and medicine to charlotte.

it is an honor when your own hard work and passion brings you to a place where you can witness the success of others.  especially when your own wheels seem to be mired down in nonprofit mud and straining to gain traction.

i always thought making an impact was exactly the type of thing i wanted to do.  i told myself that if i am going to do this, it is going to be big.  i set my sights on making an impact that is game changing  and earth shattering.  i wanted my impact to be something that changes the game, shifts the course, disrupts the norm.  i am not the type of person to dream small – both a blessing and a curse I have learned.  but you know what?  i have changed my mind.  i don’t want to make an impact.

i don’t want to define my impact, measure my impact, chart my impact, report my impact, refine my impact, quantify (or qualify) my impact.  i don’t want to defend my impact, project my impact, scale my impact or replicate my impact.

i don’t want to make an impact.

i am going to make an imprint instead.

an imprint is made by connection.  an imprint lasts.  an imprint is visible.  an imprint takes time.

an imprint is something bestowed from one to another. an imprint is fixed firmly in the mind.

an imprint is the work of the heart and soul to nurture the heart and soul of another.

to change the way we educate children – especially the children i serve who face the struggles of a chronic illness – will take making an imprint.

so the next time i am asked what impact RR will have on the world of education, my response will be that impacts may be neatly measurable  but imprints change lives.

An Open Letter to Jim Cantore During Your Charlotte Visit

Jim!
I am just so thrilled to hear that you will be visiting the Queen City to experience the southern snow storm with us! The city welcomes you with open arms, and I wanted to be sure to introduce myself and take a moment to personally welcome you to Charlotte.

For well over a decade I taught middle school students science at Charlotte Country Day. I am 100% confidant that if you asked any one of the 1000s of kiddoes I taught who I admired most on TV they would all say Jim Cantore! Your enthusiasm, my friend, is unparalleled and was always something I wanted my students to experience as much as they could. Today would have been one of those magical teaching days when I would have thrown the lesson plan out the window, tuned into The Weather Channel, and spent the entire day watching, predicting, and most of all getting over-the-moon excited about the weather. It is the love of learning – the sheer amazement and joy of our world – that I always wanted them to leave with.

So, I would love to offer my street to you and your crew as a place to broadcast. We are lovely friendly folks with experience hosting this sort of thing. Homeland filmed on our street and I must say we are quite a fun bunch. Y’all are more than welcome – we would love to have you.

I would also like to mention that we share the trait of unbridled enthusiasm …. I am guessing any one of my peeps would echo that loud and clear. And by no means do I mean this with disrespect, but I do think I could give you a run for your money in the weather excitement department.

I have since left my teaching job at CCDS to start my own nonprofit with a mission of nurturing the minds of children facing extended illness. At the heart of my work, and the work of my organization, is the commitment to provide opportunities for these children to explore and find their own passion – the thing that lights their fire and gets them so jazzed up (you know, like thundersnow)

Anyway, the door is open! Charlotte and I welcome you and look forward to visiting more soon

Xo
Trish

Retraction :: Original 2015 Intentions SUCKED so I made some new ones….

Stuart Scott quote

I don’t even know where to begin today….

I think the best place to start is to retract, on some level, my previous new year’s post  (go ahead – read it here if you haven’t already – Living 2015 )  It was soft.  It sounded….squishy.  My voice is in there, somewhere, but it was way, WAY too nice.  Here is the thing – all of my intentions are great for me.  They are.  But where is the challenge, the inspiration, the kick in the ass that I really want to give?  Not in that post.  Not for myself and not for you.  So I am giving myself a re-do.

Here is what I really want to say:

IT IS TIME TO WAKE THE EFF UP AND FIGHT LIKE HELL FOR YOURSELF AND OTHERS!

Let me see if I can pull this together for you…

Stuart Scott was a familiar voice to me since ESPN is basically on permanent play around here, and I never gave him much thought until last year at the ESPY awards.  It was a powerful speech made even more so because it hit so close to home.   And so so SO sadly I didn’t think about him much again until the news of his death a few days ago.  Shame on me.  You know why?  Because what he said in that speech is IT.  Those words, so very powerful in the moment, faded.  We moved on with our lives…. and so did he until he couldn’t any longer.

We are incredibly lucky to live in a world FULL of second chances.

Now his words are everywhere – Pinterest and Facebook and Instagram – powerful words spoken by a powerful man 6 months ago.  We resurrected his spirit – AWESOME!  Let’s not let that spirit fade again.

Stuart Scott quote

This is my favorite image from the many I have seen.  First it gives the WHOLE quote, which is important, and it also shows what is in his heart, even MORE important.

Do you see what is written on his arms?  Look closely.  2 things.

  1. Kicking Cancer’s Ass
  2. Making  a Difference

Kicking Cancer’s Ass.  Yes, sir, you sure did.  Every damn day that it did not control your mind or your thoughts or your heart.

Making a Difference.  Amen brother!  Every damn day you turned your focus on others it was unable to control your mind or your thoughts or your heart.

Playing teacher now….

Read his quote.  The whole quote.  Now what if we changed the word cancer to whatever you have in your heart that is the sludge, the regret, the guilt, the boredom, the FEAR?  Make this quote yours.  Not an easy thing to do, I know.  It’s hard to look in that dark place.  It hurts.  You might cry or feel overwhelmed.  Boy, I hope you do because it is the only way to see that truth.  I am going to crack open that dark place of mine for you….

When I die, it will not mean that I lost any part of my life to the anxiety of being a caregiver to a husband with cancer.  I beat my anxiety by the way I lived, why I lived and how I lived.  So I am going to live.  Live!  I am going to fight like hell.  When I get tired, I will lay down and rest and I will let someone else fight for me.

Can you do it?  Can you now write it down? (oooh, that makes it even harder)  Can you write it down and save it somewhere?  (harder still)  Can you say it out loud to someone else? (ouch!  stop!)

I look around and see SO much more that I want to do.  Right now I can fight, and I can fight like hell.

I cannot even begin to list all the reasons why I can do this, want to do this and I should do it…..but they are the same reasons as you I suspect…. privilege, education, intelligence, privilege, talent, confidence, privilege……

My challenge for us this year is to never again forget the words of this man, and other men and women, that speak directly to our souls.  Words are the most powerful tool we have to change, to grow, to inspire, to heal, to nurture.  And when those words are backed by sincerity and energy and action – holy shit we might just be able to change the world.

Now THAT is a New Year’s post!

(By the way I MUST say thank you to one of my inner circle peeps – Anne S. – for basically calling me out last night.  She told me she was waiting to see what I had to say about 2015 (good LORD the pressure).  I told her my heart wasn’t really in that post at all.  Her response “Yeah, I know.  I could tell.”  Ka POW!)

Living 2015.

living

I’ve never been one for resolutions in a new year.  Even four years removed from the classroom, my rhythm still resonates with the beginning and ending of the school year – that’s when I feel fresh and new and full of opportunity.  Personally I think it is hard to get too jazzed up about much when the holiday hangover sets in, the house needs un-decorated and the skies are mostly gray.  We are all tired – December has taken its toll.  For me it is always worth the price, definitely.  But to set forth and embark on a massive life overhaul….no thanks.  I really just want the kids to go back to school :)

I am going to play the resolution game a little bit this year.  Not because it is necessarily a fresh start, but really because I need something to write about (joking) (kinda).  I have decided that I am going to look at 2015 as if it is the start of a new school year – new calendar, new notebooks, new pens.  My intentions for this year come straight from the lessons I learned in middle school classrooms.

I loved that space so much…the energy, the angst, the learning, the failing, the push and pull of adolescence.  It was my space and my world to create for the kids.  I set the tone every single day.  If the lesson was boring (and I admit that maybe ionic and covalent bonding doesn’t speak to everyone’s heart…) andchose to believe it is boring…well then heaven help me, it would be boring.  The kids would sense that energy (even Ms. Rohr thinks this is bogus) and honestly it would be a nightmare of a day.  I learned very, very quickly that everything I taught was THE BEST.  Seriously.  Ionic and covalent bonding is best thing I could possibly teach you today and the best thing you could possibly learn today.  And I backed it up.  Atoms became boyfriends and girlfriends and their dating lives played out on the white board as they shared, took and refused each others advances (electrons).  The electricity unit started with the electric slide and then shocking the heck out of each other with the van de Graff machine.  Sometimes it was a political cartoon to get them jazzed up, other times it was simply playing, loudly, “She Blinded Me With Science” as they walked in the room.   I set the tone.  And my tone was contagious.

Creativity combined with organized thought.  It was my mantra for learning.  It is not, and never will be, a one size fits all world.  Everyone thinks in a unique way influenced by their experiences in life.  Use it or lose it.  Figure out how something in school connects to you and use that connection to help you learn.  No one else may understand why or how, but as long as YOU do, you are good to go.  So we practiced this idea of being creative as a catalyst for understanding every day.  I think there was once a buzz word – metacognition – that I even made a group of kids write in sharpie on their science binder as a reminder to think about their thinking.

Once a day I had the honor and the pleasure to sit with 10 kids for 15-20 minutes without an academic lesson plan.  What an indulgence AND no doubt the most influential and important part of my day (and likely theirs).  We came together to support each other, to grow, to think, to share and to laugh.  Oh and dance and eat.  We did a lot of that, too.  A little family in the middle of a roller coaster day.  No pressure of homework or tests.  We just were there, in that space, together.  I felt the tremendous responsibility that came with those minutes.  I knew when the kiddoes needed a dance party or they were in a place to talk openly about a world issue.  They were met with a brain teaser some days or just an inspirational quote on the board other days.  We challenged other advisories to kickball games or became crazy carolers in the hallways during the days leading up to holiday break.  And when something happened that needed more attention, we had built the trust to turn to one another.  This is where “Rohr Rockstars” originated by the way…..our little family with a cute little name.

So from all of that rambling and thinking, can you see the intentions I am working from, at least right now?

  • I set the tone.
  • I will share myself with others.
  • I will be creative with organized thought.
  • I will build and cultivate spaces to be true and authentic.

What about those five pounds I’d like to lose?  Or organizing the playroom?  Or taking Rohr Rockstars to the next level?  Of course all of those things are things that I would like to do, but none of them define who I am as a person, right?  I don’t want to define my year with “goals” that are ancillary to who I am and how I want to continue to grow.  I am not a better me by losing 5 pounds – I’m just 5 pounds smaller.  Not to say that goals are bad, they aren’t.  I have them – a lot of them.  But I don’t measure the value of myself and my life by checking them off my goal sheet (yep, I’ve got that too).  I become a better me by honoring my intention to be a better me and allowing my intentions to be my guide.

Intentions allow me to live.  I know how precious life is – I know it can change on a dime.  I intend to live this year.  I intend to share this year.  Here’s to living in 2015.  Hope you join me!

xo

Dealing With The Non-Believers….

I am going to go out on a limb and saying that our family was pretty fortunate for the run we had.  Far too many families have had to deal with the non-believers way before their time.  I could blame social media or television.  Spying eyes over your shoulder while on Pinterest is a killer for sure.  Stupid adults and their blabby mouths…  But really, it’s the stinkin’ kids.  They are the ones that ruin it for everyone.  Older brothers and sisters, caught up in a rage, blurt out non-believer hypocrisy.  Then the angry younger brother takes it to the playground….it’s used as a weapon.  A shame inducing weapon of words…. No, they don’t move by themselves!  He does NOT come the first day of December from the North Pole.  If he was really real don’t you think he would find a way to escape being trapped behind the sliding door of the pantry???  Sigh.  It’s over.

Sixth grade.  We made it through the sixth grade holiday season with both of the kids.  I hear rumblings every now and then that last year my son didn’t believe…. yeah, right.  I saw your face.  You may have been thinking about it, but you weren’t quite sure.  Not ready just yet.  Boy I love you for that.  Thank you, both of you, for giving your dad and I such pure magic.

I am proud to say that our elves came WAY before the Elf on a Shelf/Pinterest era.  We were all on our own with Silver Spurs who arrived one day with sincere caution and trepidation from a wide-eyed kindergarten girl.  She already knew what he was capable of doing – she had seen it with her own eyes.  A mischief maker.  Brought to our home.  A sly fellow who could get all kinds of pissy when the food diligently left out for him was not up to his liking (it took us a long time to realize that the thin gingersnaps were what he was after).  Silver Spurs never disappointed.  He didn’t come with any crazy rules or guidelines.  Some days he brought small treats like a few Hershey Kisses.  The next day he dumped every single book out of the bookshelf in the playroom (he was bored I guess).   He has camped out on the sofa in front of the TV, done yoga, roasted marshmellows….  And some days he did nothing.  Nothing.  And that was ok, too – patience my dear friends.  Patience.

We “adopted” two additional elves one year from Marshall’s as an experiment to see how Silver Spurs would receive them.  They all played well together, thankfully.  I’m glad we added on because we did “lose” our beloved Silver Spurs to the sliding pantry door a few years back.  Looking forward to the kitchen renovation to get him back….

man down
man down

But now….non-believers.  Well, I am having none of that.  And neither are the surviving elves.  We are doing it In honor of our  {temporarily} departed Silver Spurs….

What do you do with two eye-rolling, huffing, whispering, hypocrisy-embracing, critical, quasi-grownup teenagers?  You hit back.  HARD.

I’ve got my stash of tiny candies and gum…..I am already laying the groundwork and luring them into complacency.  They have been warned….

“Start paying attention to us if you want more candy.”

No response.

“We have been holding this container of gum for 24 hours … there will be consequences for your lack of action.”

Nothing.

Do they not know me?  Are they underestimating my ability to get what I want?  Are they too caught up in their snarky non-believing teenage world to play along? Silly, silly teenagers.  THIS is the magic of Christmas.  Not the clothes from Scout and Molly’s or the new Nike Airs….It’s the fun, and the laughter, and the joy.

All I can say is game on, peeps.  Game. On.

this is child's play....time to bring the smack down
this is child’s play….time to bring the smack down