So many feelings

Today is Wednesday, August 28th. Today is the first day of school.  Casey is sad.  It's the first day time he doesn't return to school with everyone as he has done for 20 (well preschool and kindergarten may have had different start dates) years.  He didn't always like or cooperate with school work but he sure loved going.  He loved the commotion and the attention and just being around the kids, staff and teachers.

Today Colin would have/should be, started/starting his post grad year #1. I *think* we would have had him continue as a post grad like Casey did. Although, Casey physically went to the high school and Colin did 99% of his school from home.  Casey also loves to learn.  Colin was a reluctant learner, lol.  Some things interested him more than others, of course.  He was really starting to enjoy cooking and art projects and he was convinced that he should have won at the Science Fair :)   But, there was so much more we could have done with his communication and his expressing his thoughts/feelings, etc.  Not sure what it would have looked like around here.  Since Casey is done with school, he is home. Of course he goes out and has appointments, we do fun things and occasionally he goes to Howard for activities but much of the time he is home.  I can't quite imagine Colin being cooperative with school stuff while Casey was in the next room!!

All this thinking makes me sad. Colin being gone is certainly huge all the time, and gives me such a heartache, especially on what should be a milestone day.

Casey is sad, too, but I didn't harp on the fact that it was the first day of school.  He was aware that it was coming up, of course, but I never actually told him which day it was.

A couple of weeks ago, he expressed interest in buying some groceries for the Milton Family Center.  He has done it several times before.  For some reason, Casey is concerned that people get enough to eat.  He's always telling us to eat. He has zero interest in trying foods, so who knows.  Anyway, the Family Center was also looking for donations of school supplies.  I thought it would be good to shop for both.  Well, Staci, Casey and I went into Dollar General to shop.  Someone was NOT cooperative.  He would say Casey back.  Casey school, etc.  He was loud and not a good picker outer.  But we got through it.  Staci and I had both already picked up some supplies so we added the new stuff to the stuff we bought today and headed to the Family Center.  I asked for Kelly and she came out and made a big deal about Casey :) We will miss her as she is retiring and leaving the state to live with family in Georgia.

So this really showed us how Casey was feeling about his school life chapter ending :(  I hope we can make his next chapter stimulating and fun.

And let me tell you, I have those feelings, too.  It's been weird, these past 6 months, with Casey not in school.  I could kind of pretend that it was a long summer break, but now, when back to school time is, it hits.  I've spent a lot of my time with some sort of connection with the school--meetings, emails, baking for meetings, composing letters, thinking about curriculum, behavior and behavior plans, scheduling, etc.  I used to go to school with Colin some days as well as the meetings, etc.  And I spent countless hours with him on 'TV school' when he was home bound.  Now it's done.  All gone.  No more.  Such a big part of my life that has an end.  It leaves me feeling a little ungrounded so I can imagine how Casey feels.  I couldn't wait to be done with high school and move out and start college.  Casey doesn't have that.  Didn't have that to look forward to. I hope we can keep his mind and spirit happy and growing.

Casey gets his 'live' Beatles fix

Casey has been looking forward to going to the Champlain Valley Fair all summer long--"The Ten Best Days of Summer." (which is actually the symbolic end of the summer since it's the end of August/beginning of September.)  Nurse Julie and he made an unofficial date to go together.  He mentioned it almost every day.  There was to be a Beatles tribute band show and he loves the Beatles so he was excited!

The day finally came.  He has 3 Beatles shirts to choose to wear.  He picked one for day time and one to wear to the show later.

I haven't been to the fair since I went with Colin which was a few years before he died.  I don't think we went in 2014 as there was no good show that year.  Anyway, I can't quite bring myself to go without him.  I have a few of those places/events that I can't bring myself to go to/attend.  I stayed home and binge watched season 2 of Mindhunter and hanging out with Jaxon, Moxie and Nuggie.

Got Casey all duded up and in his chair.  Put his hands in a 'bin-din-do' (Kathy's term for the fabric Velcro straps that can hold his hands in place) and strapped his chair in the front position in the van,and then he and Gene were off. Nurse Julie parked in the Mazza's stand spot and caught their attention as they drove by.  /She followed them in to the fair, so that was good.

Nurse Julie sent me lots of photos so I could keep apprise of their exploration. They met up with Bill and Mrs Wetherbee.  Seems like they were able to do quite a bit before the show started.  Julie had been worried that the handicap area (covered box area) would be full but they had no problem.  They stayed for the whole show, which is pretty good for Casey.  Usually he'd be wanting to go walking around.  I guess all the summer concerts we went to prepared him for staying put and enjoying.

The band was pretty good.  Trevor Contois and Friends, from what I gather, have only been playing the Beatles together for a month or so (I could be wrong) in preparation for this show.  They had all sorts of instruments and a great play list.

Sorry! The pictures are out of order (the ones from home should have been first) but I don't want to mess with the blog too much because I am out of practice and don't want to mess up what I've done.

We received a beautiful, thoughtful gift today. My friend Sheila is a fellow SMA mom. She has never forgotten Colin. She knows that the color blue was his thing. She was painting this and thought of Colin and his love of blue so she finished it to honor him. I love knowing this was painted while she was thinking of him. Right now I have it on the little alter we have for Colin. Some day it may find a different place of honor but for right now I love where it is.

Thank you again, Sheila!

Candle Lighting and 'visit' from Colin

Back in the spring of 2015 I bought a solar decoration for the front of the house. It was a dog, it was blue and it had a motion sensor and it would bark when someone came to the door. I bought it thinking of Colin. We had it by the front door for maybe two years. It stopped barking somewhere along the line. I didn't put it out the next spring so it sat in the back room for a long time. When I was working on the front garden this spring I decided to put it in the garden to give the garden a little whimsy.

August is SMA Awareness month and the second Saturday of the month is the International Candle Lighting which honors SMA Angels and Warriors. This year we thought it would be fun to set up the candle lighting outside in the garden. Nurse Julie and I set up a display of different candle holders and a couple of Cure SMA signs. When it got to be sundown, we brought Casey out and lit all the candles. I took a bunch of pictures from different angles with Casey in the picture and with just the candle display.

Gene, Julie, Casey and I were all standing by the display when out of the blue we heard, “Arf, arf. Arf, arf.” WAIT! It was the blue dog which HASN'T barked in years! I immediately thought of Colin sending us a sign. I'm sure it was him. No one had been anywhere near the dog to set off the sensor, and it seriously hadn't barked in years. It happened a couple of times and I tried to catch it on video but I was never quick enough. But, Gene, Julie, Casey and I heard it. It gives me chills when I think about it.

PS  I just went outside and took this close up picture.  No barking.  I think Colin responded to all of us being there together AND the light and the love from the SMA community lighting their candles...

Sandbar with the fam

Peggy is babysitting Conor (2) and Eddie (13) while RJ and Tiff have a little time away.  She's been wanting to bring Conor to the Sandbar so today was the day.  Get ready for many pics!

It was a beautiful day. Warm and breezy.  It took 3 vehicles to get all of us and our stuff to the park, lol.  Eddie and Steve rode together, Julia, Peggy, Conor and tons of stuff in her car, and Gene, Chris, me and Casey and his stuff in the van.

We had a picnic lunch of turkey and provolone on rolls, chips and dip, pretzels, Doritos, pickles, grapes, cherries, strawberries, mini blueberry muffins and brownies.

Casey was a little bummed that he couldn't get wifi there so he couldn't use the Internet.  Peggy had radio and Gene was able to get the Red Sox game so that appeased him.

Conor is a funny, busy toddler!  He wanted to explore everywhere.  I think we all took several turns walking around and exploring the park with him.  He and I went all the way to the playground.  I helped him climb up the 'stone' wall and then slide down the slide (feet first!).

If you know Peggy, you know she is a doting Gramma and loves to buy coordinating things...so Conor had a whole shark set up:  shirt, swim trunks, chair, tent, etc.  So cute!  Somehow Gene, Conor and I wanted to see if we could fit in his little popup tent. Guess what?  We fit!

Eddie had a grand time and spent most of the time in the water. He found some kids his age to hang with and they looked like they had a good time.

I hadn't been to the Sandbar in years.  It was busy but not too crowded.  We really didn't have anyone close to us so it was pleasant. The worst was that Julia stepped on some gum and I think I stepped on a brownie that Conor had dropped, lol.

We were pooped out when we got home.  I must have gotten some wind burn because I was freezing and put on a long sleeved shirt and socks and it was just under 80 degrees!  I feel Fall in the air, especially in the evening and overnight.  I love the Fall but will miss the summer days.

Speaking of Fall, Casey is upset that he will not be heading back to school.  He has had school every fall (and pretty much throughout the year) since he was 6 months old.  It's been a big adjustment for him and it's hitting him pretty hard right now.

Candle Lighting

Here's a mishmash of pictures from our SMA Awareness Candle Lighting this year.   See separate post about Colin 'visiting us' through the blue dog.