Skip to main content

About Me

My photo
Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a rare form of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

Followers

Start Spreading the News!

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 plan to document our training runs just like the last time we trained for the Chicago marathon in 2019, and share that journey on my social media. We so appreciated having all the support during our training from our families and our friends. It helped to get us to the finish! 

Chicago Marathon 2019

We have a new bike for this marathon, so it will be a different experience all together. The race starts in Staten Island, and ends in Central Park which is one of my favorite places! The crowds in Chicago were second to none, so my expectations for this race are high! That made our experience last time. Seeing the crowds cheering people on. It was such an awe inspiring experience. 

NYC will be our first marathon with this bike!

If you can’t tell, I’m just beyond excited for this new adventure. I’m so grateful for a husband that is not only willing, but just as excited as I am to tackle this challenge. Obviously, the physicality is all him. One could say I’m just along for the ride, but we both think it’s more than that. We are a team that is humbly courageously running into this new experience, that will no doubt have it’s challenges and up and downs, but much joy as well. Through it all, we want to spread hope and share our story in order to help others. That’s always the goal. Adding Luke more into the story will just add another layer to our team. So, start spreading the news! Team Humbly Courageous will see you in November NYC!





Comments

Post a Comment

Popular posts from this blog

Dear Muscular Dystrophy

A letter to Muscular Dystrophy on the eve of my 49th birthday. This has been a lifelong journey…. Dear Muscular Dystrophy, At times you dazzle me, showing me the heights of human love and kindness, and at other times you take me to the deepest, darkest parts of my soul. I have silently pleaded, please just let this end. I don’t want to do this anymore. I’d like to say that was a one-time thought, but you’ve made it impossible to tell that as a truth.  I want to love you because you are a part of me, but you make it so hard at times. You feel like a best friend when I achieve feats that seem impossible due to my physical weakness, but also you feel like my worst enemy living inside of my body when you fail me, and I’m once again lying on the floor. You robbed me of big chunks of childhood joy, while I sat in silent envy of my friends, as I watched them effortlessly turn cartwheels, run and jump.  You are stuck to me like glue during the countless hours in waiting rooms, operati...
13 comments
Read more

In Luke’s words

Hello, welcome back to another week at Humbly Courageous. I am glad you are here! When my oldest son asked me to proofread his college essay a few years ago, I don’t think anything could have prepared me for what I would read. My biggest fear before having children, was that my life, my disability, would affect their lives in a negative way. I know what I endure as a disabled person on a regular basis, and for years I debated if I wanted to bring children into the world with me and potentially affect their lives in a bad way. After years of discussion with my husband, I finally felt like the decision was clear. I feel God put it on my heart, that He wanted me to have children. I felt that very strongly all of a sudden. As I went on the journey that Luke took me through in this essay, I felt many different emotions. I felt sad, mad, grateful, proud and so much more. I am sad/mad that the opinions and reactions of others caused us to miss out on these precious times with Luke. That part ...
Post a Comment
Read more

Deep Breath

Hello and welcome back, or if you are new here welcome!…..Deep breath this week, as we are diving into the emotional trauma of 47 years disabled… here we go with just a few examples. Sharing these are really hard for me, but I think it’s important to share because these things are not uncommon for those who are disabled. Some I’ve shared before, some I haven’t.  “Yeah, from the look of your profile picture you really look disabled 😂” There is SO much I could say to this. What does that mean? Am I supposed to look a certain way as a disabled woman? Please, enlighten me. I’m all ears.  Or how about the folks that left me on the floor of a bar/restaurant because they assumed I was drunk because I fell as I was exiting because the door swung the opposite of what I was expecting, so easily throwing me off balance. Had not had a drop to drink. Left me there, staring at me as if I was a zoo exhibit.  Even the manager came by and told me to move because I was letting all of the ...
9 comments
Read more