Super Bowl and a Super Weekend !!!!!

Despite all the difficult challenges of ALS, sometimes there are days of pure happiness and gratitude.  This happened last weekend when Tim, Sam, Joe and his girlfriend, Melissa came home for Super Bowl weekend - flying in for two short days from Texas and LA.  We had quiet time together and also fun - ate at Helmand, a delicious Afghanistan restaurant in Cambridge, then went to  hear very uplifting music from Ladysmith Black Mambazo.  On Sunday we all prayed together at our church with great music, saw the Orlando Magic beat the Boston Celtics in the last quarter, and went home to the Super Bowl.  Melissa, who went to Tulane, knew the "Who Dat" cheer and dance, which she taught us all to do, as we cheered on the Saints to victory. 

Now everyone is gone, I miss them, but we did make some wonderful  memories of family and good times that will be in my heart each day until I see our sons again, hopefully in March!

We made it to New York City!!!

For the past eight years, my kindergarten friend, Pam, and her husband, Matt have met Dan and I in NYC for a winter weekend of jazz, theater, and fun!!!  We live near Boston and they live near DC, so it is the perfect place to meet.  What would happen this year with advanced ALS?

Getting a hotel for one night, seemed too much work!!!! Size of room for power wheelchair, adaptive seating for showers, toilet risers, height of bed, etc. etc. etc.  But should we just give up on going to the Big Apple?  Maybe???

But I love many things about Nigeria, and I had read several glowing reviews about a new musical about the grandfather of Afrobeat, Fela!  I really wanted to see the musical about his life, called FELA, hear the music, see the African dancing, and reflect on his political, musical, and raunchy life.  Some say Fela is the Bob Marley of Nigeria.

So we went for just the day - Amtrack at 8 a.m., time for a fast lunch, the play, and a few drinks and snacks afterwards before boarding Amtrack at 8 p.m.  We never took a cab, just walked the seventeen blocks in 15 degree temperature and the north wind.  Disability services on Amtrack were good, and it was a smooth trip, thanks to a little help from my friends, Pam and Matt, and of course, my dear Dan.  What did I learn?  Never say never, maybe there is another way!