Connor EUGENE!

 

Our buddy, Connor

 

Okay, so his name is really Connor William Reilly.  He is the son of my best friend, Karen.  She and her husband, Bill, have 2 older boys, Tim and Owen.  Why did I title this Connor Eugene??  Well, trying to remember some of our ordinary, yet fun times.  We would see Karen and Connor in our Zoom Book Group Monday-Friday from 4-5:30.  It was ordinary because we did it every week day since March of 2020.  Thank Covid for that.  I mean really, thank you, Covid, for bringing a group of us together to do ordinary things like chatting and reading books/magazines, and watching movies on Fridays.  Fun, because our group was made of 'kids' and adults who are like us, meaning the kid has SMA.  How could that be fun?  It was fun because there was absolutely no need to be anything other than ourselves.  We could just be us and enjoy each other and have FUN.  We laughed and we giggled and we shared our lives.  Fun to us was just doing our thing while being connected by the Internet.  

So why Connor Eugene, and not Connor William or just plain old Connor?  Well, there are a lot of Eugene's in our family.  Eugene Paul (Gene's dad), Eugene Nelson (Gene), Tyler Eugene (our nephew) and our Casey Eugene.  Somehow, whenever anyone did something 'wrong' or silly or over-the-top, I would call them 'Blank Eugene.'  You know, like when your parents used your whole name when you were little and got into trouble :)  Connor LOVED his Tobii communication device and was almost always on it during group.  Sometimes he would get a little sassy :)  He would activate his Google and ask it to play something and it would activate Shannon's (another book friend) devices.  It was very funny!  He would ask it to play a Christmas song or Elton John, or a song from The Lion King.  He would also sometimes interrupt Karen when she was reading to us.  Sometimes he would come to group after his bath and he wouldn't have a shirt on yet and we would tease him.  Things like that would prompt me to say, "Connor EUGENE"!   I guess you had to be there...but we loved it.  He had his Honor Walk on July 9, 2023 and will forever be loved and missed. 

 

Casey picked out this Beatles design

 

I picked this one

Today was his Celebration of Life.  It was beautiful and heart wrenching.  Thankfully Karen's sister had her laptop set up in the main room of the venue so we could participate virtually.  I bought us each a purple Beatles shirt to wear.  Connor's favorite color and his favorite musical group.  

Lots of our sma friends tuned in and lots of the Reilly's friends from all over.  Mostly we just watched what we could and did a little chatting in the Zoom chat.  Peg B came over and we talked with her and she got Karen to come over and visit with us a little bit.  Karen took us around and showed us the areas set up with all things Connor.  There was an area of his school things, Beatles things, things from his room, his chair, etc.  Peg took pics, too.  I may post some here.  

Karen looked cute.  She went out to buy some new clothes and found some 'yellow submarine pants' to wear. She was very adamant about celebrating Connor's life and not dwelling on the sadness.  For the most part, I did okay.  Then Karen scanned by the pic in a frame I had sent them of me holding Connor when he was little.  I remember that moment vividly.  We were visiting the Reillys in MA and I had always wanted to hold and snuggle Connor.  Karen was very diligent about being as germ free around Connor as possible to keep him his healthiest.  But she acquiesced.  I was fresh from the shower with a clean nightgown that I had and she let me hold him!  He looks a little astonished in the pic. I love it! 

Connor was Casey's best friend.  They grew up together.  Yes, he was 5 or so years younger but we've known Connor since he was 6 weeks old!  Casey.  I'm not sure what he's really thinking or feeling.  He's said things with his device and we've tried our best to convey to him, that he is now in Heaven with Colin and so many SMA friends and some of his family members.  I don't think it's quite hit him 100% yet that we will not see him again until we leave this earth.  A funny thing is that he hoped there would be a priest and bagpipes at the celebration, like we had for his Grandpa O.  We tried to explain that Grandpa O had a traditional Catholic funeral and this was a non religious (but spiritual) celebration of life, like a party.  During the time we were on Zoom he said, "sad about Connor" so maybe the reality is hitting him.  

Our setup

 

Some Zoom participants and our purple sign

This was our setup.  Laptop zoom on sign "We love you Connor."  The laptop was hooked up to our TV so we could watch.  I had the ipad on another Zoom so that Casey (and I) were in the little Zoom box. Aunt Chris was here wearing her purple and watching, too.  Hopefully I will get a pic of Gene in his shirt later.  Or maybe the three of us...

We watched and sent our love through Zoom for a couple of hours. I was drained from doing just that.  I can't imagine how wrung out Karen and family will be afterwards.  💔.  

I'll end here for now.  I may add some more words or put up some more pics later on.  

But for now,

WE LOVE YOU, CONNOR EUGENE!