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 ...

Hello and welcome back! Each week, when writing this blog, I don’t usually know what I’m going to write about when the week starts, but at some point it becomes clear to me what I should write about that could possibly help someone else. This week, I ran across this verse, James 1:4 it says.....Let perseverance finish it's work, so that you may be mature and complete, not lacking anything.  I've read that verse many times during my life. This time when I read it, it stood out to me. Perseverance, is what it takes to live a fulfilled life in my opinion. I think a fulfilled life is one where we live out the plan set out before us. Each of us has difficult paths along the way. Days when it seems we can't keep going, or don't want to keep going. Things seem too hard. These difficult journeys for some can last a short time, or sometimes a lifetime. In the case of those living with Muscular Dystrophy, it's often a lifetime journey of physical difficulty. So it takes perse...

Hello and welcome back to another blog! Thanks for being here. I appreciate your support! Marriage…. In honor of our 22nd wedding anniversary on Saturday October 23rd, I thought I’d share a bit about what marriage is like from my perspective as a person with a disability. Anyone who is married knows that marriage is hard! Sure it’s amazing and great and all of those things, at least hopefully it is! However, it is also hard work. It’s a lot of compromise and selflessness. Add a disability into the mix, and that requires another level of selflessness from the partner of the person with a disability. It’s just the truth. Wedding day! My husband and I met when I was a freshman in high school, and he a sophomore. When I asked him what he thought when he first saw me, he said naturally he wondered why I walked differently. I guess the rumor was that I had a club foot, which I didn’t know until just recently. I had surgery and did casting as a child to correct that, so it wasn’t accurate as ...

Hello and welcome back to another blog! Every time I hear that Ed Sheehan song that starts out “when your legs don’t work like they used to before” my mind wanders. I know it’s a love song written about growing old together. I think, how true that already is for me. My legs don’t work like they used to before. I think, will they soon no longer work  at all? When is that day coming if it is? Am I prepared?  It’s the sobering reality of living with a progressive muscle disease. I’m fortunate that my type of Muscular Dystrophy, Bethlem Myopathy, is slowly progressive. Some people aren’t aware they have MD until their later teen years or in their 20’s or maybe even beyond. Some are like me, and have never known not living as a disabled person. Pictures from the day I was finally diagnosed correctly, it was a very happy day to finally have answers! I wanted to recap my journey with MD so far for anyone new here. I’m 47 years old, and married to my high school sweetheart. We have tw...

Hello and welcome back to another blog! Optimism...hopefulness and confidence about the future. Are you naturally an optimist? I am not. It's just not the way I was wired, but I have worked to change that over the years. Still, it's just my natural tendency to fall towards the negative, so I have to really work to change my mindset. I learned to strive to be an optimistic person from my mother. She always looks at the bright side of things.  Me and my mom ❤️ Growing up, it used to really upset me when my mom would do this. I would often be woe is me, and she would say, not so fast! There is another way to look at the situation. A lot of times, this was related to my disability. Looking back, and after having my own children, I now realize how hard this must have been for my mom, who was dealing with the unknowns of my disability right along with me. As a parent, I know that when your child is hurting or struggling, you feel it too. Mentally and physically. It hurts to see your ...