Humbly Courageous

Hello, and welcome back! You know that point when you are climbing a hill, and you are at the spot that feels the hardest? The part where you think, wow this is steep I’m just not sure I can get to the top. That’s how it feels to live with muscle weakness. You are constantly in that place, the one that feels the hardest. The one where you question how will I do this, it’s so steep? You think, I want to turn back, but you can’t. You have to keep climbing because it’s the only way.  I struggle with describing muscle weakness. The type that I feel. In the past I’ve used words like heavy, or suffocating, scary, and while all those are certainly accurate, I still feel like they don’t truly depict what it’s like.  As I was leaving church last week, we were walking out. It’s in an auditorium, and we had been at the bottom. There is a ramp on the lower level that you walk up to exit. As I was walking up it, holding onto Jamie, I got to that spot, and I thought to myself, this is what ...

Hello and welcome back! Do you ever struggle with that inner voice, the one that tells you that you aren't good enough, or you’re not keeping up, or everyone else is so far ahead of you and achieving all these things, and you will never get there? Of course you probably do. I think we all struggle with that. We are human.  This is the 38th blog post I have written. I go through these periods as I have mentioned before of why am I even doing this? What in the world does a 47 year old woman living with Muscular Dystrophy have to offer or say that even MATTERS??!! Turns out, a lot I guess.  Every time I think of hanging this up, whatever this even is.....I get a message, I kid you not every time, from someone telling me that because of what I am doing it's helping them. So what right? One person, you are doing all this work for one person? Maybe some weeks I am, and other blogs like last week's blog, really got a lot of traction. In the end, it really doesn't matter if it...

Hello and welcome back! Do you ever allow yourself to deeply weep? It could be the result of something good or bad that causes the deep weep, or it could just be an overwhelming sense of gratitude when you reflect on how far God has carried you, and all you have been through in your life. I don’t often deeply weep because it feels out of control to me, and I like to be in control to a fault, no doubt. However, sometimes strong emotions just take over and you should let them pass through.  This past weekend most definitely will go down in my memories as one of the the best moments of my life. My dear sister, along with the help of my husband and my cousin arranged a glorious surprise for this year’s muscle walk for MDA! It really was a dream come true just seeing all who showed up to support me. I did cry when they surprised me, but those were baby happy tears! It wasn’t until a few days later when I was looking back on the pictures when the deep weep hit me. All those people who we...

Hello and welcome back! I want to give a shout out to my faithful readers. I know there are a few of you who read every week and I am so appreciative 😊 Excuse me, are you so lazy that you can’t return the cart to the cart corral? Um, no sir , but I am so weak I don’t think I could take another step and safely return to my car. As you can see I am disabled.  What he didn’t see was that it took every ounce of strength I had to walk into the store, grab a cart and walk all around getting essential items that my family needs. Sure I could ride on one of the carts at the store, but here is the problem with that….half of the items on the shelves are not within reach when you are sitting.  Another reason I choose to forego the electric cart is because I can still walk. I have to admit that when I walk into a store, I look longingly at the electric cart and think, gosh that would be so much easier to just get on that and it would save so much of my energy. Yes, all true. Also true is...

Hello and welcome back! I thought it would be interesting to share my perspective on riding in the duo bike, and why I think that requires humble courage. Week two of training for the NYC marathon is this week!  Back in the spring of 2019 my husband, as I’ve mentioned before was gearing up to run the Boston marathon. He had mentioned to me before that he had seen people pushing these racing chairs in other marathons he had run, and he thought it would be fun for us to do together.  The first time I sat in a duo bike  My initial reaction was...there is no way in hell I’m doing that! The thought of all those eyes on me, staring at me, with looks of pity made my stomach turn. I actually was really just mad that he was suggesting it. And the other annoying thing was….he didn’t give up! He kept talking about it, and each time I kept turning him down.  When I joined him in Boston, there was an expo before the race, so we went there to walk around the different booths and c...

Hello, and welcome back. July 26   is a National Disability Independence Day, a federally recognized day to celebrate the 1990 signing of the Americans with Disabilities Act (ADA).  Before the ADA, people with disabilities were not legally entitled to reasonable accommodations, including at universities and colleges.  Did you know that? 👆 Does that make you angry? Does that make you sad? Do you question why did it take so long? Would you feel differently if it directly affected you every time you left your house?  I think you would. See, the thing with a disability is that at any point anyone can become disabled. It’s not always like my case where I’ve lived my whole life with my disability . Not everyone is born with a disability, but anyone can become disabled. If you suddenly became confined to a wheelchair wouldn’t you want things to be accessible for you ? Not only accessible, but accessible in the way that you weren’t causing a scene just because you wanted t...

Hello! Welcome back. Have you heard the news?! I’m set to participate in my second marathon! Jamie and I got a coveted spot in the 50th New York City marathon in November as a duo team! This is one of our bucket list marathons to run together, and can be hard to get into, so needless to say we are over the moon! We will be running again with MDA’s Team Momentum, and raising funds for the fight against neuromuscular disease. The icing on the cake is that…..Luke is joining our team for this exciting race!  It about the hat for me, not the team!  Jamie and I first went to NYC for our first anniversary, and then also our 5th. We love it so much, and also have taken the boys there too! It will be so amazing to see NYC this way, on the bike running through all of the different neighborhoods. Doing all the touristy things! Central Park ❤️ So, the training begins. Sunrise runs every Saturday, which is our day that we train together. Jamie also trains on his own throughout the week. I ...