Are you singing Proud Mary yet? Yes? Good.
Sometimes life smacks you in a way that makes you take a huge step back and say Whoa. Little trickles of things can suddenly start an avalanche so quickly.
When I first started my journey in muscle disease (because let’s face it, Harry has his journey but I also have mine), I was so lost. I felt like I was running in circles, or in a crazy mixed up pattern. Either way, I was getting nowhere. I couldn’t find help. I couldn’t find support. Even when I calmed down a bit, I couldn’t even find a run or something that supported the cause. I found muscle walks, all far away and all local ones had just passed. I couldn’t find an active, local group. I was scared and I felt alone, so I decided to do it myself. I thought for a while that I’d organize a run, or start a local MDA chapter, but all of those seemed like big endeavors that I just couldn’t do. Then Team Momentum showed up in my life. Magically, the MDA was starting a program that had people running marathons for the MDA. I felt like my prayers were answered – but I couldn’t run a marathon, and none of the runs were anywhere near me.
I backed off that idea for a bit and began to blog. That helped, a lot. I began to box. That helped even more. These little movements I was doing were pushing my wheel, little by little. I was budging the seemingly stuck obstacle, and over time, it picked up momentum. I felt good about my emotional and physical health, so I started running. At first it was 5ks, then that extended to 5 miles. I was stuck at 5 miles for a long time, until a good friend rescued me and pushed me to 7, then 8, then 9, and finally we did a 10 mile run. I remember looking at that registration thinking there is no possible way and then crossing the finish line and blowing my own mind. (Then blowing out other parts of me. Runner’s trots is LEGIT, trust me.) It was still amazing and humbling and invigorating and all things wonderful.
So then we find out it’s possible to do a half marathon through Team Momentum, and that you can do any event. I pump myself up (again through help of a great friend) and we’re registered! Our plan is to raise some money and have some fun, and my aforementioned friend has promised to again, run painfully slow with me even though she’s actual a very fast and capable runner. Over the course of a few weeks, what started as a two person team absolutely explodes to much more. Currently we have a registered charity team through The Love Run Philly for their 3/29 half marathon. Out of those 30, there are 13 people also running for Team Momentum. We’ve raised almost $4,000. TM asked me to make a short video for their promotional use, and after obsessing over it all weekend I send in my husband’s handy work. As of today, between TM and the MDA’s facebook sites, it has 13,000 views. My mind is blown. People from all over and praying for Harry and rallying behind this motion for progress.
I am so fortunate that Harry is improving. There are so many alternatives where he declines or doesn’t improve. There are plenty of dystrophies – Duchenne’s, SMA, etc – where the prognosis is awful. Granted, we don’t know which type he has yet, but it doesn’t appear to be the most severe types. Still, I feel for each and every parent, grandparent, sibling, Aunt, Uncle, friend, caregiver, and especially for the child or adult dealing with muscle disease. It feels like the world doesn’t know about us, and they should. Running for muscle disease feels natural. When I hit mile whatever and my legs ache and my body burns, I think about those who can’t do it and I am instantly fired up. I push like my son pushes when he’s trying something new or reaching beyond where he can reach. We have to have desire, we have to have hope, and we have to have fire to fuel this progress. I will never stop talking about this. Ever. I hope it is in your brain now, and it stays there. Fight with us! Together, we are progress!!