Our Story

I have a clear cut dividing line in my life.

39 years on one side – 4 1/2 years on the other.

My husband’s {inoperable and incurable} brain tumor was 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. Life was easy shmeasy. I didn’t really realize what I had. Few do. 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.

The joy I have has taken four years to cultivate. I practice every single day. Every single minute. It is my job. (Or as my 13 year old son would say “I am happy like a BOSS” Awesome!)

It started as a strong desire to give back and repay the universe for our blessings. We have always been big check writers and believed fully in our commitment to the organizations we supported financially. No doubt people like us are important. My passion was growing beyond the dollar to a place where I could share the love and joy personally.

Rohr Rockstars

I knew I had gifts to give, particularly in the world of educating children. I began the arduous process of starting a nonprofit with a mission to support children who are unable to enjoy the joys of traditional school because of an extended illness they battle. Over the past four plus years Rohr Rockstars has supported children in our community of Charlotte, as well as in Pennsylvania where I grew up. We have partnered with amazing pediatric hospitals, schools and individual families. Rockstars have been given opportunities o explore their passions and even find a new passions.  They have been mentored by amazing local artists, offered opportunities to develop writing and reading skills, and even had chances to be working scientists.  As our student-patients have transitioned back into school we have provided educational technology (e-readers and iPads) as well as private tutoring, educational testing and professional advice and counseling.  Above all else our Rockstars, and their families, have been offered HOPE through meaningful and long-term support and connection.  It has been my mission, and the mission of Rohr Rockstars, to offer to the children we serve the opportunity to grow academically so they can walk confidently and optimistically through their journey as lifelong learners.

I have spoken about my nonprofit journey countless times in the past 4 years. It has been the most joyfully painful experience in my life. I have had to dig so deep on every level- the business side of this adventure alone had me cowered under my desk, reading Nonprofits for Dummies, during a break at my first official board meeting. I have taken looooooong breaks away from the all-consuming world of RR, so long that people have asked if it still exists. I know my weaknesses have had spotlights shown upon them. I know I have made mistakes and failed in different ways. I also know all of it, every bit, is good. It is ok. In fact, it is all beautiful. Especially the failures.

Resilience (I actually love the word MOXIE…..)

I often hear “I don’t know how you and Eric are doing it. If I were facing what you are facing, I’d be under the covers or in the corner sucking my thumb.” Actually, I probably would have said the same things at other points in my life. I could not have imagined what I needed to not just survive, but thrive, over the past four and a half years. In the future I will need even more of this intangible thing called MOXIE. I know I have it, and it isn’t because anyone has told me, or given me a trophy, or a pat on the back. It is because I have fallen down and been able to get back up again. Resilience is learned.

If I am being totally honest, the seeds for change were there for me for years. I simply didn’t know what to do with this deep down voice that kept telling me my place was someplace different, someplace bigger. I never thought I needed to be BRAVE. No one ever told me to be BRAVE. I am ambitious, smart, hard working, positive, successful, enthusiastic blah blah blah. But brave?

We handle the stinkin’ brain tumor 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….. 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.

I have to ask you, now that we know each other little bit better….What is your brain tumor? Is there something in your life you can minimize through passion and service and laughter? Can you put it in its place and declare that it will not impact the life you choose to lead?

Stop giving attention to and caring so much about the brain tumor in your life. I did. I have never been happier.

Xo, Trish