30 Days of Thankfullness: November 3: A Color

Thankful for a color.  Some of these prompts are very weird! I think I will say blue.  Yellow is my favorite color but I am thankful for blue.  Colin's favorite color was blue and he could say the word blue.  So anytime any question could be answered by blue, he would say BLUE!  I loved hearing him say the words that he could.  I miss him so much. 💙💙💙💙💙💙💙💙

November 2nd: 30 Days of Gratefulness: technology

A technology. 

This is easy.  Communication devices. There are many different styles/types of devices for so many different needs of the users. In our case it’s a Tobii (brand). We've had several over the years-actually we have our 5th on order!  

Many users utilize eye gaze to speak and/or use the Internet but Casey is a scanner. It takes a bit longer to use scanning rather than using direct selection but Casey is an expert.  

Casey’s device provides endless hours of entertainment. He is never bored when he has his ‘T’. He uses Google Maps to visit the world, he uses Google to learn about history, famous people, countries, cultures, K-pop, and of course, he Googles ‘girls with big earrings.’  Yes, our boy is obsessed. 

But each and every day I am most thankful for the words Casey uses. He is sometimes stingy with his sentences but he surely gets his point across.  He tells us:  move butt, off ears (take his side things off the headrest), turn head, see TV (means he can’t see well), off shoes (he wants his DAFOs off).  Talk Aunt Chris, call Nurse Julie, FaceTime Aunt Peggy.

He is also good at telling us what to do.  Store Dad.  Kitchen Mom.  Etc.  He'll also ask for Molly Sue and Nugget.  

Without this device we would be left wondering what was going on in his head!  I mean, he doesn't tell us his deep, dark secrets but we are thankful he is able to communicate needs and wants and lets us know his feelings. 

30 Days of Thankfulness: November 1st: A smell

 

When I've done a similar prompt for the 30 days of Thankfulness/Gratitude I'm pretty sure I did the smell of lemon.  I'm very thankful for citrusy smells, especially lemon.  It does something in my brain that makes me feel good/fresh/alert/happy.  I am going to pick a different one this time.  Which smell?  I don't know yet, lol.  

This time I will say the ocean.  I miss the ocean.  Growing up on Long Island we spent a lot of time on the water, mostly Long Island Sound.  But we also would vacation in Maine on a pond, but go to the ocean up there frequently.  Then, when Mom and Dad retired to Sarasota, they lived close to the Gulf of Mexico.  I didn't get to visit them often when the boys were growing up but after they went to a nursing home, and Colin passed, I took the time to go down to visit.  We were able to keep their house in Sarasota while they were in the nursing home.  Made it much more convenient, easier, nicer for when we'd go down to see them.  Chris was down there way more often than me and she got very comfortable with being a Sarasotian (is that the word?) .  Anyway, visiting the ocean was always high on the list when I went down to Florida.  Siesta Key was maybe a 20 minute drive from the house.  Turtle Beach is THE best.  Turtle Beach is a little smaller and not was well known as Siesta Key Beach so when we went it wasn't ever truly busy.  

Immersing myself in the atmosphere of Turtle Beach was very important to me.  I would sit on the beach and use all my senses to take it all in.  I can bring myself back there, in my mind, by picturing myself on the beach and conjuring up those sensory memories.  In my head I can 'smell' the ocean!  It kind of brings my soul back to a point where it feels renewed/nurtured/solaced.  For about 5 or 6 years I would go down 2 a year, usually in December and June/July and visit the ocean.  It would fill me up until next time.  Now, with both Mom and Dad gone, the house sold, I don't have that.  Any ocean would make me feel good but the Turtle Beach smell, sand and sights, would fill me up 110%.  Someday...someday I will go back and get refueled. 

Just me and the Big K

 Nurse Staci has been on vacation.  Casey and I got to spend a lot of time together.  I thought he'd be sick of me before Staci came back but we've had a lot of fun.  We haven't gotten on each others nerves too much!  He's been pretty cooperative and his behavior has been, well, not quite exemplary, but pretty darn good. 

Some of the highlights:

One day he had Eerie Indiana in the AM, shower and trach change (he LOVES showers), Wizard 101 with me for 4+ hours, a quick walk on a beautiful day with Dad, book group, our audio book Spirit Hunters at bed time. It was a good day.

Also:  a couple of other walks with Dad, crafting with Mom, Poptropica with Nancy Hadd, haircut and library with Mom and Julie, The Masked Singer (we only watch when Gene sits with us), our spooky Halloween lights, Halloween books in book group, some kisses from Molly Sue (dog :) ), time with Aunt Chris... I'm sure there's more! 

 

It's been awhile!

 No excuses.  I wish I had the inclination to blog more regularly but it hasn't happened.  In my head I write but it never gets to the computer.  

Covid is still out there.  But we have eased up a little bit.  Dumb, maybe, but we're still being careful.  

Casey started swimming at the Rehab Gym a couple of weeks ago.  He was nervous, probably because of Covid and also because he just gets anxious about going places.  He really enjoyed it.  He's been twice now, and each time he has said, "Swimming again tomorrow."  Sorry Casey but twice a month is enough for me!  It's a lot of work from the house to van to pool to van to house to shower to table.  But it's worth it.  I know his therapist gets some good stretching in and he doesn't complain at all.  He also must be excited to see other people besides family and his nurses :)  Britni tells him stories about her kids and he likes that.  

Wow.  Can I be any more boring?