Monday, November 14, 2022
30 Days of Thankfulness: A sight
What sight am I grateful for today? I guess I would say I am grateful for seeing Casey snuggled up on his table, using his device and watching the 'pretty judge.' (Somehow Judge Marilyn Milan has become the 'pretty judge' as opposed to 'Judy'(Judge Judy) or the 'judges' (Hot Bench); that's how he distinguishes between our judge shows. Anyway, it's a peaceful time of day. An hour or so before bedtime, Gene and Molly are out at the grocery store or taking a drive, Nugget has been fed (again) and it's just me and the Big K. We have certain shows that we agree on and the judge shows are some of them. We also watch: 'Christmas Love movie, Mom.' (Hallmark)
Sunday, November 13, 2022
30 Days of Thankfulness: Abilities
What abilities am I thankful for? Today I am thankful for being able to read, and read fluently with decent comprehension and retention :) I love to read! I took a break from pleasure reading for quite a long time but have rekindled my love of reading this year. Reading for pleasure is an escape. A chance to let whatever is currently happening to take a backseat for a while. Of course I still manage to keep my ears open for Casey. My ears and brain have been trained to be able to let go a little and enjoy a book or movie but still have part of me listening for Casey :)
Reading is also a necessity to make it in this world. Just today, Gene was figuring out what we needed to do to register the vehicle we are buying/financing. Trying to navigate the DMV website and find the info we needed is tricky--it takes some digging and figuring out. For someone who is not a confident reader, something like this would be a nightmare. And, these days you can't just walk into DMV and get help! You need appointments, etc. Ugh. Anyway, I'm thankful Gene was able to figure out what we need to do.
Anyway, I am thankful reading is easy and enjoyable to me.
Tuesday, November 8, 2022
30 Days of Thankfulness: November 8th: A book
What book am I most grateful for? There are several, of course, but I think of two. One is an encyclopedia of horses that I had as a child. I HOPE that it is in a box up in our attic along with a few other childhood treasures but I don't know for sure. One of these days I would like to go through every box in BOTH our attics but it's more than a daunting task. Sigh. It was a hard covered book, red, I'm sure the dust cover was long gone. It had glossy paper and beautiful pictures of all breeds of horses. I'm sure if I was able to thumb through the book again, all the breeds and the describing words, would come right back to me.
Another one is The BoxCar Children by Gertrude Chandler Warner. I read this one way back when I was little, too. I still have my OG hardcover copy. It's not a first edition or anything but I treasure it. It was one of the books that started my love for reading. I can't even guess how many times I re-read it-maybe dozens??? This isn't a book review so I won't give you a summary here!
I thought of 2 more! I will add them!
Saturday, November 5, 2022
30 Days of Thankfulness: November 5th: A sound
A sound.
This very minute I am grateful for the sound of Casey's ventilator. He's still sleeping as he sleeps until noon on Saturdays :) Gene and I can do things around the house, or do nothing if we are not feeling like doing chores and we can tell by the sound of his ventilator that he is sleeping soundly (or not). Maybe I should say "sounds over the baby monitors". We have the base monitors (2) in the Wish Room where he sleeps. Then we have one in his 'old' room (he used to sleep there and it's connected to his bathroom that the nurses use), one in the kitchen and one in our bedroom upstairs. So anywhere in the house we go, we can hear him! We are so tuned into his sounds that we inherently know how he is doing. It's also good when Casey wants some alone time. We know what he's doing and how he's doing by the sounds on the monitor but we don't have to been in the actual room with him. He can get a little independence this way!
Friday, November 4, 2022
30 Days of Gratitude: November 4th: a Food
Food.
I love food. Maybe not as much as my FIL did. We always talk about
how much he liked to eat! There really wasn't any food he didn't like.
Thursday, November 3, 2022
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. 💙💙💙💙💙💙💙💙
Wednesday, November 2, 2022
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.
Tuesday, November 1, 2022
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.
Thursday, November 5, 2020
Thankfulness Day #5
A sound:
Well, I'm trying to get the sound on here as a video clip but I'm still working on it. It's a clip of Colin's voice. I am so thankful that I have some video clips of him. We aren't ones for taking tons of videos like some do, but I used to use the iPad to catch him talking and also doing his thing in school. I didn't have a decent cell phone until maybe 5 years ago so much of what I have is from the iPad. Anyway, it's such a sweet sound to hear. I love when I get Facebook video memories or TimeHops of him. It's hard, sometimes, but I usually end up smiling, at least inside when I view one. Colin could say "no" sooo clearly. It was a quick "no" but definitely understood. He would say, "uh huh" with an up tone to say "yes" or "more." He could say, "moo" for movie. "Bap" when he wanted his bipap back on. He could say "mama" and "dada" and "aunt". He would try to enunciate some words or use his sounds in syllables to say a sentence. We didn't always understand what he was saying but much of the time you could figure it out in context of what was going on. The cutest was when he would say, "Awww, awww". That could mean many different things. It could mean something cute or something he liked, or if something sad/bad happened. Oh, another of the cutest was when he said, "OH HO." That was his OH NO which also meant something was up/something was wrong.
I'll work on getting some clips up, I promise. But for now, here’s a cute pic of Colin
Wednesday, November 4, 2020
Thankfulness Day #4
A Food:
I could go many ways with this...but I will keep it simple. Ice cream. Or is it ice-cream? Or icecream? No matter how you write it—it’s allll good to me. Okay, I’m certain there are flavors that I don’t even want to try but I can’t even think of any right now. I’ll eat any ice cream—from store brand to super premium. It’s all good! I truly like vanilla best. Vanilla bean is tops. It’s so versatile. Sometimes I like toppings but plain is good too.
I can’t remember a time when I didn’t love ice cream. Growing up we were dessert people and ice cream was usually my #1 “go to”.
Even when I wasn’t feeling well I could eat ice cream. To this day, if my stomach is feeling queasy, ice cream makes it feel better.
Oh and back in the day, growing up on Long Island, “Wednesday is Sundae at Carvel!” Loved Carvel! We frequented Carvel a lot as I remember. Rocky Road, Butter Crunch, mmmmm.
When I was pregnant with Colin I didn’t gain much weight (way different than with Casey). My OB gave me permission to have ice cream every day if I wanted. And so I did.
Well, it’s bedtime and I have to go to go brush my teeth as I just had a bowl of vanilla ice cream with caramel sauce :)
Tuesday, November 3, 2020
Thankfulness Day #3
A Color:
That's easy. Yellow. Anyone who knows me knows that Yellow is my favorite color. I don't have a lot of yellow clothes, or yellow furniture or a yellow car, but we do have 'the yellow room.' For some reason we have names for many of the rooms of our home that aren't traditional names. We have Casey's old room (he used to sleep in there), the wish room (Make a Wish transformed our attached garage into a bedroom/swinging room for Colin), the aunt room (a guest room which was used primarily by visiting aunts), and we have the yellow room. The yellow room is a family room where we spend a lot of time,especially in the evenings and on the weekend. And yes, the walls are a bright, rich yellow. I've noticed that I've subconsciously placed many yellow knickknacks in this room.
When I was little, I vaguely remember my mother asking me what my favorite color was. Maybe I was 10? I'm sure she expected me to say blue (which was hers). I wasn't really sure, at that point in time, but I wanted to be contrary so I blurted out "yellow!" Since then I was committed. My parents went to Florida and brought me back a bright yellow tee shirt that had Florida written across the front in black letters. I think I wore that shirt 100 times that year.
I love sunflowers. They are my favorite flower. But I do love daffodils and yellow roses, too. When Gene proposed he brought me a bouquet of red and yellow roses. Around our anniversary of our first date and our wedding anniversary, he tries to find me red and yellow roses in remembrance.
Our house is gray, but we had our garage stained yellow. I won that one.
Yellow is cheerful, yellow is sunshine. Yellow is energy. Yellow is creative.
But, it has to be the right shade of yellow. Dingy yellow can be the opposite of all the positive aspects of yellow, as I see it anyway.
Oh, PS My astrological sign is Leo. Yellow is associated with Leos along with orange and red. Show me a sunflower that is yellow, red and orange and I'm in love.
Monday, November 2, 2020
Thankfulness Day #2
Technology:
Is it cheating to say 'the Internet'? I guess the web is the all encompassing technology. But I am very thankful for it. 1997. I had no computer. I think Gene had some kind of work computer. But we didn't have one that I had access to. Casey was diagnosed with SMA in May of 1997. Who had ever heard of Spinal Muscular Atrophy before? Certainly not us. My sister contacted Families of SMA (now known as Cure SMA) and they sent her a bunch of information. I kept a box of their newsletters in our backroom. I couldn't look at them without sobbing. There was too much sadness. And back then there was NO treatment. Today there are 3! My SIL lent me a desktop computer so I could use the Internet to research SMA. For some reason we had it on the floor in the living room. It was probably because we had to hook it directly into the modem and it was only able to reach a certain area. So I learned about the Internet and AOL and Yahoo. I learned about SMA. I also found my lifeline. There were other families out there with the same diagnosis. We weren't alone. I know I did a lot of emailing with families back then. There was no Facebook or anything like that. One mom set up a website and a board where we could write back and forth to each other and ask questions and give support. A true lifeline. There have been families that I connected with back then that I am still friends with today. And that's kinda cool.
Sunday, November 1, 2020
Thankful Day #1
I had fun with 30 Days of Thankfulness several years ago. I hadn't found another set of prompts I really liked until I found this one. It seems doable so I'll give it a whirl.
A Smell:
Gene made bread in the bread machine and it actually turned out pretty well. It's been hit and miss over the years. We go through phases when we use the bread machine and then we don't touch it for months at a time. I have a thing about yeast. I've not been too successful at baking anything that requires yeast. But, with a bread machine I have a fighting chance. But back to the smell. The smell of baking bread is homey. It tickles my senses and my nose feels happy. Having a happy nose makes the rest of me feel happy. Every room in the house that I walked into had the delicious bread baking smell. I actually walked outside and came back in, just so I could get the smell fresh in my nose again. Weird-probably. I could even smell it in the bedroom when I went up for the night. It made me smile.
Wednesday, November 14, 2012
30 Days of Thankfulness-Day 13-Something Old
I'll start off by thanking them for giving me many experiences and other things that I am thankful for.
I'll start a list:
Montessori School: Thank you for sending me to Montessori school for my formative years. I made a good friend there and I learned organization and neatness and I'm a REALLY good pour-er! I always offer to pour things when the situation comes up and I always thank Montessori school for teaching me, lol.
Our dog, Commandant (AKA Comma): (although I think my brother gave our dog to Mom for Mother's Day one year when I was about 5 or 6), but she was my companion for years.
Our boat, The Wild Goose: So many memories of sailing around the sound, having hamburgers cooked over the stern on a grill, Mom's beef stew that we'd have the second night after it thawed out. And, my dinghy, the Suzy C. I loved rowing and I know if I was plopped down in a row boat right now it would all come right back to me.
The cabin in Maine: I wish it was still there exactly like it was 30 some odd years ago and we could time warp back there. The blueberry picking, the lobster pound, Ellsworth, sailing, the smell of the pine trees, the ping pong table, the well (I would love to haul up some water from it right now!), bringing Laura and Mary with us...I could go on and on.
St. Thomas: How many kids get to live there for a month or two and swim and snorkel and enjoy the island?
England and Ireland: Again, how many kids get to take off from school and go touring around England and Ireland and experience castles and the moors and live in a thatched cottage?
Disney World: Thanks for being such good sports and going around the parks with us at Disney World for Casey's Make a Wish Trip.
My Audi Fox: Almost forgot. My first car. Thanks for my very special first car and getting it repainted for me in fire engine red.
The Barton House: I never actually lived there but I loved that place and I know you would have gotten me a horse if I had decided to live in the boonies.
Hiking with Dad: I wish we had a chance to do more Vermont mountains but I'm thankful for the ones we did. I wish I could remember the names, but I know you do :)
Love of reading: Everyone in our family loves to read. Mom, Dad, Chris, me, and even Bobby was known to love to read. It's one of my greatest pleasures. I wish, wish, wish, I had kept of the log of all the books I have read over the years. I have no clue as to how many I'd be up to now but I know it would be thousands.
St. Michael's College: Those four years at St. Mike's shaped a lot of who I've become. I'm sure they wish that I had 'used' the skills that I learned there in a career, and I do, too, but I know they know how happy I am to be home with my boys and care for them. If the boys hadn't had SMA, it would have been different and I KNOW I would have become a writer/editor/photographer/researcher or something along those lines.
Slides: I am very thankful that my dad was a shutter bug and took thousands of slide of us growing up. One of these days I really am going to scan them and put them on a USB hub so that we can view them on the computer.
Our wedding: Gene and I had a beautiful wedding--just how we wanted it, and we are very grateful for it all.
I'm also thankful that they put up with my teenage behaviors and that we all survived my teenage years. I really did turn out okay but I'm sure they both had their doubts over those years. Maria still can't believe that Dad would pick me up at 4:00 in the morning after I'd been out partying all night. I guess it means that he loves me :)
Of course there are many more experiences to list but I'm not ready to write my book--not quite.
Monday, November 12, 2012
30 Days of Thankfulness-Day 12- A Gadget
Sunday, November 11, 2012
30 Days of Thankfulness-Day 11--A tradition
The tradition I'll write about is coming up next week. It takes place on Thanksgiving Day. We'll let the boys sleep in a little bit but then wake them and bring them out to the living room by 9:00 so that we can watch the Macy's Thanksgiving Day Parade in our pajamas. Gene and I will start the turkey and fuss around in the kitchen but the best part is when we just stop and watch the floats, the balloons, performers and the spectators. Casey loves all the music acts and Colin is always excited to see Ho Ho at the end. Then we'll watch some of the National Dog Show. Simple but special.
Saturday, November 10, 2012
30 Days of Thankfulness-Day 10--A time of day
This is a tough one for me. I guess I'd say I'm thankful for the time of day when we're all home and we're all in the living room and everyone is happy. Which usually means that Casey is watching football on the ipad, Colin is watching Celebrity Ghost Stories or Adventure Time on the big TV, Gene is on his computer and I'm on Facebook. Everyone is
Friday, November 9, 2012
30 Days of Thankfulness-Day 9--A blog
One reason is that having our life down in words and pictures will help me remember our good times and not so good times. All of these make up the life of our family and I like that I can scroll through old blog posts and reminisce about this birthday or a certain Christmas or a day that was especially great at school for Casey. And, I can remember the days that aren't so good, the days that the boys have been sick or had infusion therapy, or when we found out Colin had a broken leg--I can look back and see that we made it through those days and will make it through more not so great days.
I also like to know that there are people out there that check in on our family. Friends, family, acquaintances, teachers--the list goes one. There's also the people that have come to know us through the SMA world. And, people that have stumbled upon this blog in some obscure way. It's kind of cool and comforting to know that people are interested in knowing how we're doing and take the time to read our blog.
I also like to think that there are some SMA families that read our blog and find some encouragement and hope. Somewhere along our journey we have found our own normal. Having two boys with SMA, as you can imagine, can be challenging but we try to keep a pretty good balance between sheltering them and getting out in the real world. I hope that other SMA families can see that you can have a life and experience things even with all the medical and physical challenges we have. I do NOT want people to feel sorry for us. I want them to see that we have two amazing boys and that we love our lives and are very happy.
| Dad and Colin playing kick ball. |
| Casey just starting to go on the zip line! |
Thursday, November 8, 2012
30 Days of Thankfulness-Day 8-A Restaurant
The restaurant that I am thankful for is no longer in business. I remember, vividly when Maria Zimmerman told me that it had closed. I always imagined it being there bringing a homey atmosphere and great food to many. Maria would kick me if she were here when I say that I can't remember which part of town it was in. Was it Southdown??
The
And then there was dessert!!! 90% of the time we had Cannolis. Once again, I've never found a cannoli that could rival Nina's, or is it all in my memories that I've put these foods on a pedestal??
Now here is something that I'm loathe to admit. We're talking about the 70s here. I graduated high school in 1981 so I was a teenager in the 70s. I'm not sure exactly when it started but I felt that it wasn't cool to be seen with my parents in public. I know things have changed since then and parents and their kids have very different relationships these days. But anyway, back to my story. Mom and Dad would go out to Nina's but I decided that no matter how much I liked it, I didn't want to go with them. It probably also had something to do with talking on the phone with friends--no cell phones back then! So, Mom and Dad would go without me and what would they do??? They'd bring me my favorite meal back home as take out. Okay, okay, I can see you all throwing things at me, but that's the way it was. I've told you all before that I like myself a whole lot better now that I'm a grown up and have kids. I was not the most responsible, empathetic teenager.
So, here's to Nina's that used to be 'somewhere' in Huntington, NY back in the good old days.
Wednesday, November 7, 2012
30 Days of Thankfulness-Day 7-A scent
I love the scent of my boys. I can tell whose tee shirt is whose just by taking a sniff :) I love the smell of horses, and the smell of a horse barn. I love the smell of puppies. But, the smell
Today, I have no lemon so you here's my packet of True Lemon and my ice water :)


