The Perfect Mistake

 

If you follow me on social media, you likely already know this story! When I got home after the MGA celebration last week, I had an email from Union Station that said they would be unable to do the lighting due to an electrical issue. I replied to my contact the next morning and said how amazing the lighting was in person and that I had seen some great pictures. She responded this afternoon that the electrical issue was that some of the lighting kept going PINK. Of course I noticed that last night because if you know me you know PINK if my favorite color, in fact my house is quite obnoxious with PINK. What they thought was a mistake could not have turned out more perfect……

Let Your Light Shine

I wrote this piece for the MGA blog but wanted to share it here also.  My wheels have been turning for revitalizing this blog as I truly do enjoy writing.  I just haven't had a lot of time over the last few years but I hope that will change!

I was diagnosed with myasthenia gravis at age 5. The depth and severity of my disease did not become apparent to me, I don’t think, until I was a teenager. Over the course of the last many years, there have been lots of times where I felt very little hope and that my light had been dimmed. As I have grown older and more seasoned in my journey with a rare disease, I know it is just part of the roller coaster.

However, last week with the help of many dedicated partners, we were able to let our light shine a little brighter when Union Station in Kansas City was lit teal in honor of myasthenia gravis awareness month. Coming off the heels of celebrating our organization’s 60th birthday, the skyline of Kansas City was capitalized with the iconic building standing teal.
As I stood at the Liberty Memorial and gazed out over the skyline, I couldn’t feel prouder of my journey and of the impact the Myasthenia Gravis Association has had on the rare disease community. There are 60 years of rich history intertwined throughout the heartland of dedicated staff, board of directors, medical advisory committee members, professionals, patients, and families who have all worked to lay the foundation to keep the glimmer of hope going.
While the light didn’t shine bright for a lot of people in 2020, a lot of pieces are coming back together as a re-emergence from COVID-19 begins. I hope this glimmer of light is a reminder of all the amazing things that are happening in our MG community right now. There are a handful of clinical trials of new potential treatments. There is one in fact, in the FDA pipeline for hopeful approval by the end of the year, and there are numerous ways to connect with groups across Kansas, Missouri, and NW Arkansas both in-person and virtually. Remember, when your light starts to flicker and you feel you are losing hope, think of the community that surrounds you. It takes a village to fight myasthenia gravis and we are all on this journey together. Keep shining, friends.

Rosé

Not every day will be Rosé but there is Rosé in every day. Might be the cheesiest thing I ever wrote, but goes with the picture! Reflecting on time I got to spend last week in St. Martin. 2020 was hard. It aged me. It changed me. And 2021 has been hard and hectic. But the warmth and the sunshine reminded me that there is change with every season and hope. Cheers to spring, vaccinations and future glasses of Rosé shared with others......

Hardships?

As I was talking on the phone this morning, I noticed a chip out of my brand new wood floor, and then two other small scratches.  A pit grew in my stomach.  How could something like that happen on something so new that I've taken such good care of?!

I've been pretty MIA from this blog for many reasons, but one being because I completely renovated my house.  Someday, a blog post will follow all about that! For nearly 8 weeks, I was living a crazy, chaotic life and am finally just resettling. So you can see how those discoveries would be upsetting.  End that call and get on another when it was abruptly stopped due to a rolling power outage.  (My work phone runs through the computer)

I was irate.  I have stuff to do! My to do list never ends.  For the last 3 years of my life, I cannot seem to get ahead or tackle things like I used to and I am plagued with this feeling of never being complete.  It keeps me up at night!  But as quick as I got mad, I got calm.  We've been living in this frozen tundra for the last 2 days and rolling power outages were predicted as a part of the energy management.  I should also add, we've been surviving COVID-19 for the last 11.5 months and flexibility is the KEY.  I scooped up my ever-not-so- friendly rescue dog and got some blankets and went to the couch.

That ever -not-so friendly rescue dog who LOVES to cuddle under a blanket, refused. She was too concerned in the quiet, with all the sounds you don't normally hear to sit still. So she perched on my leg and growled and snarled and growled some more.  Isn't it so funny how we are desperate for quiet moments and for life to slow down, then it happens and we growl about it?

It wasn't the most comfortable 75 minutes of my life.  I drafted this blog post in my head while we waited.  The house got progressively colder and darker.  And there I sat watching it all unfold.  Luckily for Ries and I, the power switched back on. While we continue to wait for the shower to turn back on, it's a small bump in the road in the big picture of life.  2020 changed our lives, changed our relationships, changed our outlooks. What can't we handle today? So whatever you are facing, keep your face to the sun and remember these days of hardship.  

Adversity builds character.