wheelchair to unicycle.

photo credit goes to my friend, Josh.

Saturday, May 18 was Friedreich Ataxia Awareness Day. I am totally bummed that this is even a day. At the same time, I am elated that it is a designated day. That means people are aware and fighting like crazy for this awful disease to be eliminated. 20 years ago I had no clue what FA even was and what was ahead of  me living with a degenerative disorder. We all live with 'could have, should have, would haves'...I have a ton of those.
But I long to live in the "what will be" or the "what now"? The above photo hopefully shows that. Although a bit disturbing, I think it's hilarious and so exciting for what lies ahead for the future of FA. In efforts to raise awareness for Friedreich's Ataxia Awareness Day, FARA hosted a nation wide campaign. The hope is that soon FA will no longer stand for Friedreich's Ataxia- so what will it represent? It is crazy to allow myself the possibility that one day FA won't be an issue and I will feel awesome!
Next week is my 4th visit to USF.  Last month I checked in over the phone. It's been a long month. I am anxious to return and check in with those in my life who are committed to finding a cure. Their dedication is contagious. It motivates me and reminds me that maybe one day I'll ride a unicycle to work and not my wheelchair.

day after day.

"I’ll be with you as you do this, day after day after day, right up to the end of the age.” This has been ringing in my ear since Tuesday of this week. I trust that is finding that place in my heart that can be occupied by loneliness. It is a reminder that I am not alone- ever. If I picture a friend telling me this over a cup of coffee, I am sure my eyes would fill with tears at the moment. But as soon as they leave, I am quite certain we would eventually forget about each other. Not intentionally, but life happens.
The cool thing about this verse found in Matthew 28:20 is that it is the words of Jesus spoken to me and you, the friend I forgot about. He is always with me. I am never alone- ever.
For me, at this moment, that is so comforting. I won't lie and tell you at other times in my life that has been terrifying. 
Having FA can be lonely. Most of the time, I feel forgotten. It is such a good reminder that He is with me day after day, right up to the end...a true friend indeed.
It is about this time when I begin to tap into the anxiety regarding the details of my next trip. I know it will all come together. It always does.

 

It's time to go back. I've missed this place.