Thank you to the lovely ladies of NMO Diaries for asking me to guest blog about our 5km Walk/Run which takes place on Sunday June 19 at Rocky Point Park in Port Moody, British Columbia, CANADA.
As we enter year 4…yes that’s right…year 4 and as I sit down to type this out now, I find myself reflecting a lot on why this event even exists. The short answer to that is that this event exists because my son, Riley, was diagnosed with Neuromyelitis Optica (NMO) on November 23, 2011.
I recently happened upon the following quote and really, it describes perfectly why I do what I do for my child.
MY PROMISE TO YOU:
To fight for you
To protect you
To be your voice
To always love you.
Pretty simple right? As parents, this is basically our job, but throw in a diagnosis that you have no control over and these words take on a whole new meaning. Early on in Riley’s diagnosis, I learned that I had no control over what was happening to him and that no matter how hard I prayed and pleaded, NMO was not something that I could take away from Riley and transfer to myself. I must admit, that has been, and continues to be, the hardest part of this journey….I cannot take it away and I cannot transfer it to myself!!!! What I have discovered, however, is that I CAN fight, I CAN protect, I CAN be his voice, and I CAN love!!!!
Once I figured that out, I thought about what I could do to fight this monster that had grasped my child so tightly. Those who traveled with us for that part of the journey, will remember the seemingly endless violent relapses and the happy homecomings and then another relapse. This repeated itself over and over in that first year, and as I type this now, I stop over and over to collect myself as the waves of memories from that horrible time almost suffocate me. As I catch my breath, I can only think “Thank God that right here, right now, we are no longer there”, and yet during those times it seemed like it would never ever end. (you can read a glimpse of the story at www.nomorenmo.com ). In those days, I was a runner and found very quickly that running allowed me to process and to grieve as I pounded my feet into the earth. It became for me, my therapy, and I am grateful to have had the strength and the endurance to be able to run and work through this very difficult part of our NMO journey. It was during one of those runs that the thought came to me to have a run specific to NMO. I visualized a sea of green and what a blessing it has been to see that become a reality. When I founded the First Ever 5km Walk/Run for Neuromyelitis Optica (NMO) in 2013, I had no training in event planning. It was then, and continues to be, frustrating at times, but then I remember my promise…to fight, to protect, to be his voice and to love. This event is my promise come to life in battling the monster that lives in my child. It has become so very much more than that now. In times of grief and desperation, we find comfort in those who just “know” exactly what we are feeling. Early in Riley’s diagnosis, I sought out support. I was searching for people who understood what I was going through and that search produced so much more than I could have ever imagined. What I found was a family…a group of people that opened their arms and their hearts and invited me in. At the very lowest times, they have been the arms that have surrounded me and at the highest moments, they have rejoiced and celebrated loudly with us. I have been blessed so far beyond what I ever imagined and I struggle to find a word big enough, loud enough, to express my gratitude for this incredible group of people that never would have been a part of my life had NMO never entered our world. So you see, an event that was started because one little boy received a diagnosis, now continues because that monster has grabbed ahold of too many people that I love. To each of you who battles this disease, I extend my promise also to you. I will fight for you, I will protect you, I will be your voice and I will always love you.
As we prepare for year 4, there are many emotions, and over the years, I have started to see a pattern in that. At this moment today, I am wondering what our sea of green will look like this year. Our registration, although off to a good start, is very slow moving right now. Those who know me well, know that causes much panic in me. I celebrate every registration as it comes in and with each name I see, I hear the words, “I’ve got your back”. I always think back to the movie, Field of Dreams and the line “if you build it, they will come.” I think okay…”if you plan it, they will come”, which totally makes sense because there is no way the people in our lives would leave us standing alone!!! Last year, we had 16 people with the diagnosis of NMO on our race site and what a blessing it was, and will continue to be, to provide a place for these amazing people where they can feel loved and supported while we work towards our common goal of a CURE! Who wouldn’t want to be a part of such an amazing experience!!!! We have made it so easy for anyone, anywhere, to be a part of this event. If you are unable to be there in person, we have a virtual participant option which just lets you say, “we can’t be there physically, but we CAN fight this with you.” Each year, I write the names of all of our virtual participants on my race shirt so that I bring you with me onto the race site.
So there you have it! Never in my wildest dreams or plans did I ever even think that I would found an event or become a rare disease Advocate, but each year, each speaking engagement, confirms that I am exactly where I am supposed to be at this moment, on this journey. It is a wild, emotional, scary, never ending ride, but it has been filled to overflowing with blessings and has taken me places that I never ever imagined I would go. Thank you to the amazing people in my life, who even when this journey has been at its most treacherous, buckled up their seatbelts, and stayed by our side.
Would you like to register for our event? Please do so here: https://www.raceonline.ca/events/details/?id=1186
Would you like to see what all the hype is about, watch highlights from our last 3 years here: https://animoto.com/play/hHjb2xjvnYgUtFQeSek2ZQ
Please join us, in whatever capacity you are able, in making a difference in the lives of those who live daily with NMO. Every dollar donated and every step taken brings us closer to a CURE!!! #BecauseItMatters