Mardi Gras TIme

Today was Mardi Gras Day in my hometown of New Orleans and also here in Acadiana, but the celebration actually started over a week ago.  Since Hurricane Katrina, it marks a time when many who were relocated make the trek back home to enjoy a taste of what makes New Orleans so unique and to visit family and friends. 
Mardi Gras also now becomes a mark in time of the progress of ALS in our lives.  Our family celebrates on Sunday by getting to St Charles Ave very early  and staking out our spot at the corner of Amelia.  The lead crew gets tarps down, chairs out, ice chests unloaded and food tables set up. Others arrive throughout the morning and by the time the parades reach us, there's usually 30-50 friends and family members hanging around.  Two years ago, I was part of the lead crew complete with crazy hat.  Last year we celebrated the holiday and a Super Bowl victory by our beloved Saints, hanging on the Ave waiting until the evening hours to see Drew Brees reign as King Bacchus. 
This year brought a different challenge, would I be able to participate in the family fun?  I'd had great visits with my sisters and their families, friends and my Mom Friday night and Saturday so it was already a great weekend.  Sunday would bring huge crowds, traffic, bathroom issues and mobility problems as well as iffy weather, was it worth the effort and the hassle? Hell yeah, it was! ALSucks in so many ways and the disease takes life away bit by bit and there are some things I just can't do, but this was doable. So we loaded up and headed down to meet the family, an hour later I was in my wheelchair with Ryan rolling me the last two blocks to the party.  The weather turned out perfect, so I sat and got some much needed sun, enjoyed the bands and the parades.  Haven't exactly figured out how to catch beads while sitting in a wheelchair behind two rows of ladders, so if you have any ideas...
Everybody made sure I had plenty to eat and drink, and pictures with everybody, even a picture wearing the toilet seat sunglasses.  We all laughed, played and partied and enjoyed being part of the crowd that was celebrating New Orleans.  As the afternoon went on, we made ready for our escape, said our goodbyes and ventured out to cross St Charles and head to the car.  With Brad providing the lead blocking and Ryan pushing and me shouting "Clear out for the short guy!" we made it to the church parking lot.  While waiting for Gina to bring the car around, one of the little boys asked "Why you got wheels?" to which I replied " I got wheels because I'm a transformer!" and watched his eyes get wide as I rode away.
So I am a transformer and ALSucks is a transformer, it is transforming my body everyday while I am transforming my spirit and my soul everyday.  Facing the monster has challenged me to do what I didn't think I could do, to prioritize the important things in life and to live everyday cherishing it in a whole new way. Romans 12:2 says it best " Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will."

 Mardi Gras 2010 when I could still hold up my right arm