Mud Run CompleteMay 10, 2012 by Victoria
Mud. Obstacle courses. Being fierce and ferocious. Screaming our warrior cry. Feeling empowered. Kicking some SMA butt with some killer SMA moms. Survivor Mud Run = Complete.
When I committed to doing the Survivor Mud Run, it was on a whim. But this experience was definitely a powerful one -- one that has given me strength. It is not often that I get to tangibly feel like I am fighting SMA. Sure, we are fighting every single day -- personally and through theGSF. We are fighting to keep Gwendolyn alive -- literally saving her life almost daily. We are fighting to give Gwendolyn the life she deserves -- full of experiences and wonderment and social activity. We are fighting for change -- increased funding, advancements in research, expanding awareness and knowledge, creating more opportunities to access the world. We do an awful lot of fighting -- just like all those facing SMA or any severe disability. But it is not often that I feel like I am tangibly bare knuckle beating SMA. I did that day. And it felt good. Really, really good to scream and yell and get all of the hate I have for SMA out -- out of me and out on that obstacle course -- side by side with my fellow Warrior Moms.
This is us Before:
Jennifer, Meri, me -- So clean.
And this is us After:
Photo courtesy Hime Romero, Manteca Bulletin
Meri Phelps, mom to Aaron, is the one who organized this as a way to honor her son's four years since his SMA diagnosis. Four incredible years that according to statistics should not be his. But he's here and he's living and he's amazing. And so are his parents. Meri is not an athletic person -- she hasn't exercised in years apart from running to quickly respond to Aaron's alarms. But she challenged herself for Aaron. She pushed herself physically to do all the things that he can not do to help create a day when he can. This is what Meri wrote after the run:
"I am not an emotional person. Not with SMA. I can count on two hands the number of times I have shed tears since Aaron’s diagnosis. I think it is my own way of battling against the diagnosis, and the prognosis, and absolutely refusing to give in and to give up. So imagine my surprise as I was driving down the freeway, listening to my motivational music (Van Halen), when I started to tear up. Who cries at Van Halen? Even Victoria thought I was nuts. Maybe it was fatigue, maybe it was nerves, or maybe after all of these long days and nights battling SMA for my son, I realized how very much I want that cure. Now. Not tomorrow, not next week, but now.
Robert and I have watched Aaron’s strength change little by little over the past few years. We don’t talk about it much, if ever. When your child is all but paralyzed, the little losses of movement become quite noticeable. I think day to day, being with Aaron, listening to him laugh, make jokes, and behaving like a typical 4 year old with his attitude, we become very good at looking past the physical limitations that SMA has placed on Aaron’s body, and enter our own little world of normal. Sometimes it is not until we get out into a public place, and hear kids ask “what is wrong with him” and “when will he get better” and “why can’t he walk” that I am brought back into everyone else’s normal. I honestly wouldn’t know what to do with an infant that could hold their head up, because I have always held Aaron’s head up for him. I can’t imagine picking up a child and swinging them by their arms, or having a child that can sleep and turn themselves through the night. Or a child that can drink a cold glass of milk with some cookies. That image formed in my mind back on April 21, 2008, when I was sitting in the neurologist’s office waiting for that now notorious and dreadful appointment when I learned about SMA. All I had to feed Aaron in the waiting room was cold milk, which when offered to Aaron resulted in a fussy face and a refusal of the milk in my then 3-month old baby. Now I know better. Now I know about SMA. My little boy will never know the simple joy of a cold glass of milk and a cookie. He can’t chew. He can’t swallow. Aaron has SMA.
So for you, Aaron, for your buddies who fight daily to overcome the challenges of SMA, for the moms and dads out there who face SMA head on to make life with their children amazing, and for those families who have paid the highest price for this disease, the death of their children, this dream of a cure, and my efforts to get us there are, and will continue to be, for you. I love you Little Buddy. You are my hero."
Meri bravely completed the Survivor Mud Run twice -- on Saturday and again on Sunday. Between Meri, Jennifer and I over $1,500 was raised for theGSF. THANK YOU! But Meri isn't finished. She has already organized another crazy obstacle filled run, the Recon Run, with a big group of people and has plans to do more after that until she raises $4,000 -- $4,000 in honor of Aaron's courageous four years.
Thank you Meri. Thank you for challenging yourself to complete these physical challenges. Thank you for encouraging others to join you. Thank you for turning these personal accomplishments into an opportunity to push SMA forward. I know I am better for it.
You can make a difference too. Join Team GSF >> Make your personal triumphs even more powerful by helping to change the future of SMA. We are continually inspired by those who push their physical strength to the limits to help conquer a disease that robs children of theirs. Team GSF ROCKS!!!! We move our bodies so one day they can too. TeamGSF.com