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.  

It's a wrap!

Casey is done.  Done with public school.  He has been in the Milton Town School District for 22 years.  He started with Early Intervention at 6 months of age.  His last day was January 18, 2019 which was 5 days before his 22nd birthday.

What a ride it's been!  Mostly good. A few not so great times.  Some frustrations but lots of celebrations.  We have made connections that are ever lasting.  Casey loves his tribe. 

Friday, school had a little graduation/celebration for him. He was surrounded by his people and was happy as could be.  Not everyone could attend, of course, but he had lots of attention and people chatting with him and praising him and sharing memories and joking around...you get the picture. 

Speaking of pictures--I didn't take one but others did.  Here are some:

Casey and his buddy, Eric

Casey and Tim (Special Ed Services)

Eric, Chris, Me, Casey and David

Kaitlynn rockin' the kilt with Bill W and Nurse Julie

OH, and the kilt! See Kaitlynn's kilt?  Casey has been obsessed with Scotland and all things Scottish for a while now. Somehow Kaitlynn promised Casey she would wear a kilt to school on his last day. Casey and Paula (para) shopped for the material.  Somehow, Paula made a beautiful kilt for her.  She followed through on her promise and looked cute as a button!

Trevor, Terri, Melodie and Casey

One of the principals and Julie being a little crazy.  (Actually, MJ was standing on the chair to get good pictures, lol)

The man of the hour

A bunch of us.  Wish we had thought to take a picture sooner

Pat, Gene, Casey and Jennifer

Us

You can tell that even if he was having a good time he still does not like having his picture taken.  We managed to get a few. 

Casey wanted a Sponge Bob theme.  For some reason he is going through a Sponge Bob phase.  He and Paula made a cool SB wreath.  He shopped for decorations. School provided some very nice treats.  We had cider and cucumber water, cheese, crackers and pepperoni, watermelon and some others healthy treats.  Julie and I decided that an ice-cream bar would be fun--even at 10 AM.  So we had a huge assortment of toppings and ice-cream. Chris made Peanut Butter Kiss cookies, too.  Doesn't seem like anyone took pics of the food or decorations--bummer.

He received a binder filled with letters and notes from many of his peeps, a bunch of cards and an autographed pair of drum sticks. 

He chose to stay the rest of the day. 

On the way out, we brought home a bunch of his stuff, and Sponge Bob :)

Julia and I held Sponge Bob's hands and walked him out of school.  Aunt Chris was jealous, haha.

Here he is heading to the bus for his last day.  Every day when Casey would leave for school, I would say: Bye Casey.  You be the best.  See you in X amount of bits.  (the X could be little, medium or lots. It was according to whether there was a meeting (little bits), medium (usually going into the community) or lots (staying the whole day at school).  It was our thing, and I'll miss it.  I suppose if he goes somewhere without me, we can still do it, but it won't be the same. 

And here is his final roll off the bus and down the driveway.

One more thing to add.  I want to share the post our friend, Jennifer, made. She was Casey's very first teacher.  She has continued to be a part of our lives in many ways. 

‎Jennifer Bower Knowles‎ to #4goals

January 18 at 10:55 AM · 

Hi guys...this needs it’s own post even though it is a post for me. ❤️

Today is Sue O'Neill’s son Casey last day of public school (school can only go until age 22 and his birthday is next Weds). There was a celebration at the high school. I went through my desk and found my planner from 1997 and the entry for the first time I met Casey.

To say that Casey and Sue and Gene and blessed Colin changed the course of my life would be an understatement. The gifts they have given me about the power of resiliency, unconditional love, the magic of perspective changing and capturing a lifetime in single moments altered both my practice as a teacher and my view of the world.

Thank you to Casey and his family for letting me love you all for so many days and so many more days to come.

My response to her post:

Thank you, Jennifer for coming into our lives and not missing a beat-thank you for seeing Casey as a little boy and not just his medical needs and daunting medical equipment. Thank you for being the best Early Intervention teacher! You set the bar high for the rest of his education! 
We look forward for being Benny’s guinea pig (haha). (FYI, Benny is Jennifer's dog that is in training to be a therapy dog).

My response to the comments on the post:

Thank you, everyone for recognizing the ‘bigness’ of this day for us. Casey is a super special guy and his ripples have reached so many people. I’m very blessed to be his mom and to have been along for his ride. We have a whole new ride to conquer!