This is not your typical TSFM blog post. I’d like to believe that I am your typical TSFM Ambassador because the role of a TSFM Ambassador is to represent every kind of runner, and what I’m about to chronicle is true and honest in both events and the feelings associated with them. It’s a real world kind of blog with all the glamour stripped away and just the honest truth left. I’m afraid that the lack of puppy dogs and butterflies may not sit well with some, but maybe there will be some who read this and it will resonate with them more than happy trees and perfect days with perfect runs.  Sometimes we go through challenging times. And sometimes those challenging times happen to coincide with training for a marathon. Or becoming an Ambassador for the San Francisco Marathon where your chief role is to inspire and encourage others to realize their true potential. To help them see that they are champions. To make them believe that they can, and will, achieve greatness on the streets of San Francisco. That, armed with a reason to run that is wholly unique and just their own, they will overcome whatever obstacles are before them to make it to that starting line on July 27, 2014. With recent events that I will detail a bit later, I’m finding this a bigger challenge than anticipated.

I used to think that running solved everything because, for a while, it did. It’s true, events and situations would not change with a good, long run, but my ability to deal with and understand them most certainly did. Running gave me the clarity and perspective that I needed to adjust to difficult situations. Running provided me an opportunity to sweat out the stress and frustration that was the product of a rough day. Running gave me the endorphins to have a nearly invincible sense of optimism about the world and why things happened. Some days, a short 4-miler would do it for me. Other days, a grueling 22-miler was needed. But, in the end, I always finished a run feeling better than when I started. Until now, that is.

I suppose I should back up now and tell you how I got into this predicament. I’m a school psychologist and six months ago, I met Ronnie.

IMG_3036When Ronnie was 4-years-old he was diagnosed with a very rare and aggressive form of brain cancer called Diffuse Intrinsic Pontine Glioma (DIPG). DIPG is an inoperable tumor located on the pons of the brainstem, which is the most primitive part of our brain. This part of the brain controls our automatic functions necessary for staying alive: motor control, swallowing, breathing, heart rate, and consciousness. Chemotherapy is ineffective, and radiation only delays the progression of this illness for a short period of time. The rate of survival for this type of cancer has held steady for decades and decades at 0%. Yes, you read that correctly. Zero percent. The average time that a child has left following diagnosis is roughly 9-12 months. DIPG is primarily a pediatric cancer, though on very rare occasions, an adult will suffer the same affliction.

Back to Ronnie, I knew he was special from the first moment I met him because, in addition to the life and light that he radiated, he was 11 when I met him. Clearly an outlier, he had already beaten the odds by living with DIPG for many years. Several years before I met Ronnie, his tumor went dormant. He was not in remission, because it was still very much in his brain, but it had stopped growing. For the most part, Ronnie was living life as a normal kid. He loved reading, riding dirt bikes, playing card games, crocheting and finger knitting, and getting into mischief with his two younger brothers.

But, in the late summer of 2013, Ronnie started having some all too familiar symptoms. Then, in September, an MRI confirmed that the tumor was growing again. At an alarming rate, to boot. Over the months that followed, I got to know Ronnie and his family as if they were my own. I worked harder than I’ve ever worked to raise awareness about childhood cancer and DIPG. I organized fundraisers, and I became such a fixture in their home that I wouldn’t be surprised if I started receiving mail at their address. I can honestly say, I had fallen in love with this entire family.

During these months, I was so thankful to have running.  While there was nothing that I would have rather been doing than helping and supporting Ronnie and his family through this difficult time, it was certainly a stressful and challenging experience. Running was what kept me sane and able to balance work, motherhood, being a friend, and being a wife on top of Ronnie’s cancer. Thank goodness that I had The San Francisco Marathon to train for because we all know how healing a long, slow run can be. Running was the sole weapon in my arsenal to deal with what was going on around me. Running is what I’ve always relied on when things got tough.

After months of watching his agonizing decline, I got the call to come over…quickly. I knew what was coming. I had known it was coming for a while. But now it was imminent, a most unwelcome visitor. And then, the hospice nurse said the worst phrase you could hear anyone say about a child, “Probably just a few hours now…”

On January 20, 2014 I sat on the end of Ronnie’s bed at his home and watched him take his last, labored breath. The sadness and grief that was to follow has been nothing like I have ever witnessed or experienced in my entire life. It shakes you like a rag doll breaking everything inside of you, including your spirit, and most certainly your heart. The death of a child is far worse than you can ever imagine or prepare for.

After Ronnie died, I didn’t care much about running and I certainly didn’t want to do it. But, I made myself do it because I had always felt better after a run; “peace restored” as I called it. Seventeen miles later, exhausted, I returned home no more at peace than when I left. I was profoundly let down. This was the first time running has not made me feel better. Turns out, running isn’t always the answer.

IMG_3524In the end, Ronnie’s tumor had left his body paralyzed with total loss of motor function. The stinging cruelty of DIPG is that, while your functions slowly fade away, your awareness does not. He was fully aware until the very end of what was going on with his body and I know he would have given anything to be able to run. So, for Ronnie, I run. I don’t particularly want to right now, but I do it. It takes everything in me to summon the energy to secure a ponytail, pull on the shorts, and lace up the shoes. I’m exhausted when I’m out there. It is a conscious and deliberate effort to keep running mile after mile. There has yet to be a training run since Ronnie passed away that I haven’t cried while I was running. But, for Ronnie, I will not take this gift of running for granted. I will not let my health and ability to go to waste when his was so painfully and tragically ripped away from him.

I’ll keep running for Ronnie. And one day, after I’ve clocked my miles, I will find that peace has been restored. It will probably happen a little at a time, but I do have the faith that it will happen. With diligence and faith, I will find myself toeing the line at the start of the San Francisco Marathon on July 27, 2014.

Running a marathon is a cathartic experience in and of itself. Even when everything is puppy dogs and rainbows in your life, completing 26.2 miles transforms you into a newer, better version of yourself. What drives us to run is different for everyone. Some of us may share similar reasons, but running is such a personal experience, that when you boil your reason to run down to the bones, it really is different for everyone, if only on a cellular or atomic level.

When I run TSFM this July, just as when you do, we’ll finish with a wave of emotion. Jubilation, pride, and appreciation will radiate off us for everyone to feel. Depending on your reason to run, you might even feel a little pensive; I know I will, for those who can only join us in spirit for this celebration of completing a marathon. But it will still be grand and glorious, and to run and finish in a city as amazing as San Francisco will only add to the luster of this remarkable accomplishment.

So, as your 2014 SFM Ambassador, am I plugging The San Francisco Marathon? You betcha. This is an amazing race. But, I’m also plugging finding your reason to run, personal and intimate and inspiring. I’m plugging making the most of everyday. I’m plugging childhood cancer and DIPG awareness. I’m plugging taking one day at a time, or one step at a time, if that’s where you’re at. I’m plugging the return of when running holds all the answers again, because one day it will. Until that day, I’ll keep lacing up the Brooks and head out each and every day for my reason to run: My Ronnie.

 

To register or the San Francisco Marathon, go to: www.thesfmarathon.com

To learn more about DIPG, check out this video.