The Life of Everett

While obviously Everett's family and extended family of aunts and cousins saw Everett on a daily basis, or if not daily, almost daily, I was only blessed with his presence for his usual trip to Minnesota in the summer, and my couple visits to Arizona each year. But over those ten years of his life, it seemed that he was a strong and important presence in my life.In addition to the in person time, there were video calls, and following him on social media. As always, I can look back and wish I spent more time with Everett.  But also as usual we take for granted that we have all the time in the world, and especially would one assume that my grandkid would be around through my entire life.  So now I'm left with a lot of memories, some of which I will share here, if only to keep them alive for me. 

We knew very early that something was not right with Everett.  He seemed like a normal happy baby. As he got to a point of being able to move around, it became obvious that he was having some difficulty.  His muscles didn't seem to work right.  If sitting in the middle of a room, he was unable to stand up without something to support himself.  After several doctor visits and tests, the gene with a defect was identified.  Initially, they thought it was some form of Muscular Dystrophy.  But it wasn't.  While they identified what the problem was, there wasn't any fix for the condition.  The good news was that it was not a degenerative condition.  Everett would always have to deal with the muscle issues, and adapt to the limitations that imposed.  Otherwise, he should continue to grow and develop as other boys.  

This turned out to be the case.  Everett was an intelligent, funny, engaging boy with lots of personality.  As he grew bigger, he needed more assistance getting around.  While still able to walk on his own, he used a wheelchair more often to get around easier.  This meant a lot of extra work and obstacles for Sarah and Matt. Everett required more assistance getting in and out of cars.  They always traveled with a wheelchair.  There were extra doctor appointments, physical therapy sessions, fittings for body braces, and countless other things.  But, Sarah and Matt seemed to handle it all like it was just normal day to day activities.  

As I've already described, Everett tried to keep up with his brother and cousin with all their sporting activities.  The great equalizer for Everett was his swimming ability.  Put Everett in water, and all his limitations on land disappeared.  No more fears of falling, no problems keeping up with anyone else, no lack of skills in the water.  He took after his grandma Marj, who was a water safety instructor and swim team member.  Sarah and Laura inherited the same talent, while unfortunately, Martha has more of my lack of comfort in the water.  One memorable time was at Lake Harriet when Everett was visiting.  He may have been about 7 or 8.  At the beach, there was a swimming platform that was just beyond the ropes, and required a swim to get there.  Chase, Coen and Everett loved spending time jumping from the platform and playing games seeing who could perch on the edge the longest before falling in.  Liveguards were on duty monitoring kids who were heading to the platform to make sure they were strong enough swimmers to be out there.  After watching Everett struggle a bit on the walk to the water's edge, and then observing that Everett was swimming toward the platform with his mother and me by his side, the lifeguard appeared to be having serious doubts about Everett's plan.  He should have been more concerned about me and my lack of abilities.  But after observing Everett swim for a couple minutes, he was off to attend to other matters, assured that Everett had no trouble in the water.

It was pretty rare that I ever had one-on-one time with Everett.  Typically on visits, the whole family was around.  One day while in Arizona, I was on my own, and popped over to Sarah and Matt's for some reason.  Only Sarah and Everett were home at the time.  Sarah was wrapping up some work, and said I should go back to Everett's room where he was playing computer games.  Computer games were another equalizer.  There were no barriers to Everett playing games on line with his cousin and other friends.  I walked back to his room, and sat next to him to see what he was up to.  As my family knows very well, I am a disaster at computer games, but also a source of great amusement for them when I attempt to play.  Just ask them about my Tetris skills.  Anyway, I had now entered a part of Everett's world and asked him to explain everything to me.  To Everett's delight, the tables were turned and he became the teacher with the knowledge to fill his Papa in on the world of computer games.  It was shortly after Christmas and he was excited to show me his new system with dual monitors, and a set up ideal for gaming.  I kept asking questions out of genuine curiosity.  Everett seemed very happy to have me there and to be able to share his knowledge with me for a change of pace.  And for me it was a special moment with Everett that lasts to this day, several years later.  

I could go on with many fun memories. I’m not sure I want to do that. I am at a bit of a stand still here, and not sure where to go with all this  I started this with great enthusiasm, thinking the words would just flow. I’ll see if I can get inspired again.