Humbly Courageous

Hello and welcome back! I recently headed out to the grocery store to get a few items we needed for Thanksgiving dinner. I was about 5 days into my recovery from my recent sinus surgery. I was starting to get some strength back and thought I was up for a quick trip to a small grocery store nearby.  Thankful for my family! I parked my car. It was crowded, so I didn’t get as close of a spot as I was hoping for. Instantly, I regretted my decision to get out on my own. If you are new here, I live with Bethlem Myopathy which is a form of Muscular Dystrophy. Up until about 2017, I was mostly ambulatory except for times after surgeries when I would need assistive devices while I recovered. It started with my using a cane, and then I was gifted a scooter which helped me to be able to travel easier and do more things that required a lot of walking. Since 2017 I’ve had to use my scooter more and more as I age and the disease progresses. Fortunately, I’m still able to walk while at home and o...

Hello and welcome back! Do you love to travel? I think it’s fun to go and see new places and see how other parts of the world live. I enjoy traveling, but as my disease progresses I find it harder and less appealing to get away. Part of my anxiety stems from all of the unknowns. If you don’t live with a disability, chances are these things never cross your mind.  Pizza in NYC is a must! If traveling with my wheelchair or scooter, which I almost always do now, I have to think about and prepare for if the room I get will be big enough for my family plus the scooter. Is there a walk in shower, are the beds too high to get into, is the city I am traveling to accessible? These are things you can’t always count on. Even in “accessible” rooms walk in showers are not standard which makes no sense to me. I have a very hard time stepping over a tub to get in the shower. If you read my previous blog you know that I recently visited New York City for the marathon.  If you’ve ever visited ...

Hello and welcome back! This is my 50th blog post! Seems fitting that I am writing the 50th blog post talking about Jamie and I completing our 2nd world majors marathon together, the coveted 50th NYC marathon, and guess what?! We won first place for the duo bike competition! Not at all why we were doing it, but kind of icing on the cake! Speaking of icing on the cake, our son Luke who is 18 ran the marathon too, placing 3rd in his age group. His first marathon ever! Another fun fact before I take you on the journey of the day, is that Jamie and I were the first ever duo team to run the NYC marathon for MDA’s Team Momentum!  All smiles! What you see is Jamie pushing me running. What you don’t see is that I don’t just spend the entire ride cozied up with a hot cocoa. I have work to do. I manage all of his nutrition for the run/race, refill water bottles while he’s moving which takes practice so I don’t soak myself and freeze to death! I constantly look for hazards on the path, or in ...