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

$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