Casey will be 28 tomorrow

Best birthday gift--again

 I just got the best birthday gift!  It's not my birthday and it technically is a card, and not a gift per se.  But it was more exciting today than it was on my actual birthday back in 1984--yes, 1984.  

One of our nurses son has a radio show, well, several, shows, and one of them is called Vinyl in Your Pocket where he and his cohost play a vinyl record album and talk about the artist, songs and history.  He was running out of albums to play so I offered up some of our collection.  Gene and I haven't had a turn table in years but we have kept a bunch of records.  I gave Alek a handful of albums and he's played a couple so far (my favorite Zebra album being one of them).  

This morning, Nurse Staci came and handed me an album that Alek had played.  

Wow. I don’t even remember owning this album. But I know it is mine. I know it's mine one, because Gene never would have owned a Duran Duran album, and two, because I peeked into the sleeve and saw a jagged piece of red paper. I pulled it out and my heartrate immediately started picking up as I realized what it was.  I knew that hand writing.  

I know it’s not the best pic but can you see the writing?  That’s my best friend from childhood, Laura’s handwriting. Laura passed away from breast cancer in December of 2017.  In our later adult years, we hadn't been as close as we had in junior high and high school but we always knew that each other was out there for each other.  Laura ended up living in the Pacific Northwest far away from our childhood in Long Island, NY.  I had skipped up to Vermont after high school and have remained planted here.  She was one of the smartest people I knew.  Her dad was a chiropractor and Laura ended up becoming a chiropractor and became a naturopathic doctor.  She was pretty crunchy :)  We may have drifted apart...she getting into the things she loved and I got married and Gene and I had two kids both with a neuromuscular disease called spinal muscular atrophy, type 1.  So both Laura and I were enmeshed in our current lives but we always had our childhood and teenage memories.  Boys, friends, our twin Schwinn bikes, the park, the sleepovers, the parties, the vacations, the music.  And we were there for each other.  

I was still half asleep as I had been nurse Mom to Casey overnight and hadn't even finished brewing my French Press yet.  But I couldn't wait.  I pulled the card from the envelope and my heart skipped a couple of beats.  I had no memory of this card but I obviously had read it since it was ripped open.  

So funny!

I laughed when I pulled the card out. NOT a typical card choice for Laura to have made. 

Here is what she wrote:

7/28/84

Dear Sue-

I always get you a mushy card, the same kind all the time.  For the big 21 I decided to be different. And since this is the year to drink...

HAVE ONE (hundred) ON ME! 

Well, 

HAPPY 

BIRTHDAY!!

Love Always,

Laura

Moooch!!

......................

Oh, my heart!  Swamped with memories and feelings. 

Laura's moniker was Cow.  Actually, we didn't really call her that but MOOO was her byword, her expression, her way of saying hello and goodbye,  When I write on her Legacy Facebook page I always end with MOOOO!  

She ended this card with Moooch, which was one of the ways we'd say Love you/Smooch, etc.   

I don't know what made me peek into the album cover this morning, but I'm glad I did.  

My birthday

 7:15 PM and I could go right to sleep!  Had a big day. 

Nurse Julie came for Casey so Gene could work and I could have a day out. 

Chris came over about 9:30 and then Peggy and Julia picked us up. We headed to The Shelburne Museum. I’ve been many times but the most recent was several years ago and every time the experience is different. They have their regular collections but they also have lots of changing exhibits. 

It was a pretty hot and muggy day but I think we did well. We didn’t complain much!  There are lots of buildings—some modern and some old, some air conditioned and many not!  So we were in and out a lot.  

We had lunch in the cafe.  Nothing extravagant, but it was quiet and clean and the food was good.  Chris and I split a chicken salad sandwich.  Had some chips and iced tea.  Peggy and I had a vanilla/chocolate twist creemee.  It wasn't the best ever, but it was very refreshing.  

I definitely loved the carousel.  I also loved the Mary Cassats and Monets that are in the regular collection.  The circus train (I think 200' long!) was super cool to see again.  And all the period doll houses were awesome.  The Ticonderoga was cool, too.  Dad would have been pleased that we checked it out.  

We did A LOT of walking.  Peggy said her Apple watch said 8000 some odd steps, and that was just at the museum, let alone the rest of the day,.  We only took the shuttle (extra long golf cart kinda thing) once.  It was a nice relief and the breeze was wonderful.

AND GET THIS!  I did not buy anything in the gift shop!  My purse was in the car, so I would have had to have someone else buy it for me, but I didn't feel compelled to buy anything.  It's all beautiful merchandise and I could have picked one of everything but I really am trying to minimize and downsize.  I have pictures to remember our day.  

Made it home by 3 something.  Made it in time to do Book group with Casey.  It was movie day so we watched the new 2023 The Little Mermaid.  

I also got some nice gifts but I won't detail them here :)  I will say that Chris got me an air purifier with a reusable air filter.  We've never had one, believe it or not.  I'm hoping to use it in our bedroom--carpet, dog, cat, etc.  

I'll also say that I enjoyed all the texts, calls and Facebook posts!  It's really fun to read them all, thank you!

Loved the carousel!

The Ticonderoga

Chris in jail!

Me in jail.

Purple flowers for Connor

Casey insisted I open his gift,  "Mom open now.  Present.  Open."  So it was late but Gene took it out of the freezer and unveiled it!  It was a homemade icecream cake that Casey and Nurse Staci made!  It's never too late for icecream so I had a piece before bed :)  It was very yummy.  Gene said they were doing all sorts of things in the kitchen, mixing and crushing and using the Kitchen Aid.  He was very proud.

Here we are at the unveiling.  Best picture that I could get.  If Gene took it, it wouldn't have been much better, haha.

See the cookies in it and the sprinkles??  Yum.

I was very happy when Deb came and I could head up to bed.  Took a while to wind down, but when I fell asleep, I was zonked!

Casey turns 17!!!

Seventeen! Casey is 17 today! It's hard for me to wrap my head around being old enough to have a child that is 17, let alone knowing that when Casey was diagnosed with SMA type 1, no professionals thought he'd be here today. Of course we were scared over the years, and those first 3 years were extremely rough, but we never let the diagnosis dictate to us. Casey has done so many things in his life that many 'typical' kids have not done; zip lined, touched a whale, ridden rides at Disney, been to Fenway Park to see the Red Sox-twice, concerts, road trips, etc, and we will continue to LIVE and enjoy our lives that happen to have SMA entwined in it. Happy Birthday to our BIGGEST!

I think that between my Facebook page and Casey's we must have over a hundred birthday wishes for Casey!  Thank you, Cashel Gardner for posting birthday wishes on SMA It Forward because he got tons of birthday wishes from Cashel's friends.  Very heartwarming to think that someone will take a bit of time out of their day to think of my boy and wish him a happy day!

Made Casey a Red Velvet cake.  I was going to use some prepared frosting but it smelled all chemically and tasted gross.  So I made some real frosting with cream cheese, powdered sugar and vanilla.  Of course the recipe I looked at didn't make enough so I had to make more.  But it turned out yummy and I didn't do too bad a job of frosting it.

I enlisted Julia and Karyna to help finish decorating Casey's birthday table.  It took a lot of directing and coaxing them, but we got it done.  We put up banners and streamers and hung some balloons.  I arranged his cake, cards and gifts.  He had a pretty good haul!!

Casey had a good day at school.  He stayed after and went to the community book discussion as part of his Read, Read, Read class from last semester.  Apparently there were two other books as part of the discussion and no one had read Francona, phooey.  Well, Casey had something prepared to say about it and Nancy H had read it as well, so she said a few things and that was it.  Gene picked them up at 3:15.  

Gene had to go back out to get Casey's birthday balloons.  Never too old for balloons!

Colin wasn't the most cooperative kid.  He was J E A L O U S!  Every time someone called for Casey he would yell/vocalize very loudly.  

We opened some gifts and cards but he still had lots left.  He really seemed to like the clothes that we got him from American Eagle--he is definitely growing up!  Colin made awful faces when we asked him if he'd like clothes for his birthday.  

We did the traditional singing of Happy Birthday and the boys 'blew out' the candles with the candle snuffer. We had cake and ice-cream and then it was pretty much time for bed.  

Happy 17th Birthday Big K, Plumpie, The Bigster, our oldest!

Back at it!

I've been wanting to get back to writing here every day.  Not sure what stops me.  I always think that I want to go back and write about some special days/events before I start the day-to-day blogging and I never do.  So I will start here.  I was looking for some old pictures of Colin in his stander and looked back at old journal entries from 2006, 2007, etc. and I had many memories sparked by reading them and it's made me want to document more diligently again.  I hope I can keep it up!

Today is Aunt Chris' birthday.  I made a Devil's Food cake from a mix.  Made homemade frosting with Baker's chocolate, powdered sugar, vanilla, milk, Madagascarian vanilla and two ounces of cream cheese to add a little zing.  Colin tried the frosting and found it to be pretty yummy.  So I had to make her special birthday meatloaf.  We also had a can of peas (her favorite, although they weren't the baby LeSueur ones), noodles with broccoli and Italian bread. It all turned out pretty well :)

Anyway, I got Colin ready for school and did all the morning stuff and Lauren came to do a shift with him from 10-6.  He was happy to see her. He did stander and was up at 42 degrees for about half an hour.  That extra 2 degrees is a good thing as he's not gone up that far for a while.

I managed a nap :)   Can't believe how hard I slept.  But, first I read some of Emma (Peggy and I are making an effort to read some classics).  I'm glad that I didn't live back in the early 1800s.  Man, all she cares about is who is 'good enough' to marry who and who shouldn't associate with who, etc.  Boring and shallow.

Maria (Casey's SLP/case manager) called today and wanted to know what I thought about him taking Creative Writing instead of Read, Read, Read again.  The more we talked about it, the better it seemed.  Kathy Montague is the teacher and he has her for English 11 as well, so they'll already be meeting, and it will be continuity for him, etc.  I think it could be a good thing.  He seems fine with the idea.

Casey's DynaVox is still doing something weird.  Gene thought he and the rep had fixed it Monday, but it's still not sending words to the Internet like it's supposed to.  I'm kind of confused as to what's going on so we'll see what Paula thinks at school and then I can describe it to DynaVox later today and get it taken care of.  Casey hasn't been able to do his Google Maps for a couple of days and it's driving him batty!

Casey had a pretty good day at school.  He stayed in English a bit longer than yesterday so maybe he'll ease into it okay.

Lauren played some WiiU Rayman's Legends for a while.  It's one of those games that her generation is good at like Mario...I couldn't get past the first little part as I kept dying and would use up all my lives and have to go back, sigh.

Then Aunt Chris played the Lego City Undercover.  It really is a cool game and I'd love to play it myself but it's one that she's pretty good at so I'll let her be the player.  Of course I have to keep my ear out as to what they're doing and have to help out in certain parts so I guess I get to play it and enjoy it, too.

After dinner it was time for cake and presents.  Poor AC didn't get many exiting presents but I used up all my good ideas at Christmas time.   I ordered flowers for her at Centerpiece from Mom and Dad and Gene picked them up.

Then it was bedtime.  We went in about 15 minutes earlier than normal since Casey was so tired.  The boys and I started a new book called Ungifted by Gordon Korman.  I think it might be a good one.  The boys were sad when we finished the Magic Tree House last night.  Found out there's one more out that we'll buy.  Casey says we can use his Amazon card.  I'm glad that both boys like the Magic Tree House books but one of these days they'll have to get too old for them.  They really are already but we've been reading them so long together that it's like "our thing."

Happy Birthday to me (well, on the 28th)

This is a big birthday for me.  This year I am eligible for AARP!!  That means I am turning 50.  This is by far the birthday that has rattled me the most and made me think about my life.  I loved my 40s--although I had some blips physically, all in all it was a good decade.  Of course the best part of it was having my boys grow up and mature despite having SMA which was supposed to take their lives by the time they were 2.  Well, poop on SMA.  They are 16 and 12 now!

Anyway, I thought I'd share my birthday hoopla with you all.  My mom and dad are on their way up from Florida to spend some time with all of us and, of course, celebrate their baby turning 50.  They should be here on Saturday--just in time to celebrate on Sunday.  We'll probably have baby back ribs some salads and brussel sprouts for dinner.  Chris had me pick out my flavors of ice-cream and extras for a big, yummy special ice-cream cake.  I think I picked pistachio and moose tracks ice-cream, brownie base and some mini Reece's peanut butter cups.  Can't wait.  Not sure if we'll have the O'Neills over on that day, but we will get everyone together at some point.

Drum roll...my SIL, Peggy (Gene's little sister)is very generous and has offered to take me away overnight for my birthday to an inn in Bennington, Vermont.  She is a planner and loves to explore and shop and discover new things.  So, I'm adding itinerary that Peggy created so you can see what adventures we have in store for the two of us!

"DAY ONE

On or around July 30ish around 7:45 am, Sue will enjoy a leisurely drive down to Manchester VT while sipping on delicious coffee and a having a car picnic of croissant and fruit.

Sue might enjoy some window shopping in the Outlet Malls http://www.manchesterdesigneroutlets.com/index.php followed by a light lunch at the Marsh Tavern http://www.equinoxresort.com/assets/uploads/marsh-lunch.pdf

An exursion to the Northshire Bookstore is necessary http://www.northshire.com/for Sue to get a book to read later in the day.

After that Sue will appreciate the scenic 30 minute drive down to Shraftsbury to visit the Robert Frost Museum http://www.frostfriends.org/and if she feels up to it, she will relish a refreshing walk around the Healing Springs Nature Trail http://www.vtstateparks.com/pdfs/shaftsbury_springs.pdf

Then Sue will be escorted to her suite at the Ice House located at the Four Chimneys Inn, http://www.fourchimneys.com/ to freshen up before her 2:30 p.m. dry pedicure and deluxe manicure appointment at the Green Mountain Oasis.

After her appointment she will have a relaxation period where she can read a book purchased earlier in the day and nibble on a light appetizer of cheese and crackers.

After resting and relaxing, she will enjoy dinner at the Publyk House http://www.thepublykhouse.com/publyk_menu.pdf

The day is not over! Sue will return to her room for wine and dessert. 

DAY TWO

After an amazing night's sleep, Sue will waken to a hearty breakfast at the Inn. She will then depart for window shopping at Bennington Pottery http://www.benningtonpotters.com/, the Antique Center at Camelot Villages, http://www.antiquesatcamelot.com/ etc. She would also like to spend some time ooing and ahhing at the pies at the Apple Barn and Country Bake Shop http://theapplebarn.com/

After a lovely morning, Sue will enjoy a lunch at the Madison Brewing Company

www.madisonbrewingco.com

Sue will spend the early afternoon visiting the 5 covered bridges of Bennington County

Then at 2 pm she will have a 60-minute massage in her room, followed by a long nap.

Dinner will be at Allegro Ristorante, for northern Italian – www.vermontfinedining.com

DAY THREE
After breakfast at the Inn, Sue will pack up her lovely things, say goodbye to the Innkeepers and then head out to the Bennington Museum http://www.benningtonmuseum.org/visitors-information.html

She will then head north and have a quick stop for lunch at an eatery - perhaps in Vergennes at the Black Sheep Bistro http://blacksheepbistrovt.com/

She will return home around 1-2, feeling refreshed and happy."

Who is jealous????

Happy Belated Birthday to G'ma O

I was bored this morning. All the boys slept in, including Nugget!

Beautiful morning. Warmish and nice.

Casey took a tubby and chose to lollygag so he didn't get to spend time outside. Gene and I took Colin outside and he helped put up the house numbers on the side of the house facing the road. Enjoyed the sunshine (although it was a bit breezy) and then Dada and Colin walked to the pond.

I made a cake for Grandma's belated birthday. Yummy yellow buttery cake with vanilla frosting in the middle and chocolate on the outside.

Grandma and Grandpa came over while I was napping (I was kind of grumpy and thought I was getting a cold).

Gene made a chicken and veggie stir fry and we had rice and a 'lovely' beet salad he concocted.

Here's Grandma putting out her candles!!

Colin is 10!

Yes, my youngest is now in double digits! Both Gene and I can't believe that so much time has passed! In so many ways it has flown by! I still think of Colin as a little guy and he's not--he's a tween now I suppose!

I made Colin's cake in the morning. I usually don't give them choices as to what kind of cake to make but I asked Colin and he had a firm opinion--yellow cake with chocolate frosting--weird because neither of the boys is much of a taster but he said that's what he wanted so that's what he got! I had given Gene a list of what to get and when he went to Price Chopper some of the cake mixes were on sale. He found a yellow one and brought them up to see if they were on sale, but this one wasn't and it was the only yellow mix they had. Luckily for him, he did the right thing and bought it! He knew there would be hell to pay if he brought home anything different than a yellow cake mix and chocolate frosting!

Colin's class had a bit of a different schedule today which worked out in his favor. He doesn't usually get to see them at snack time but today he was able to be on TV school for it so they sang Happy Birthday to him, ate his cupcakes and Scooby Fruit Snacks and showed off their Scooby Doo rubber bracelets. And, the class also sang Happy Birthday during their music class!

Casey had a pretty good day at school.

I ended up making dinner and complained the whole time. I just don't like it. I know I should do it more often but it's hard because the boys are needy that time of day and I have to go back and forth a lot and I get stressed out. But, I managed to make shake and bake pork chops, mashed potatoes and mixed veggies. Doesn't sound like a big deal, but with the phone ringing and Colin owing and Casey yelling and my hands full of breading...well, you get the picture.

While I was cooking, Aunt Chris gave Colin his 'expected' present; Rango Wii. The minute the movie ended yesterday he said "Aunt Wii Rango." She pretty much told him that he would be getting it for his birthday. So, Julie played with them for a while and they had a grand time. It looks like it's going to be a good one.

Gene brought home a balloon bouquet with lots of blue balloons and a helium with Batman on one side and the Joker on the other. He thought it was cool.

After dinner Colin got to make his wish and put out his candles. We've traditionally used a candle snuffer to put out candles since the boys can't blow very hard. The cake was good and Colin tried his chocolate frosting.

Presents came next. I think he was a little overwhelmed. He is the type of kid that gets something and wants to play with it, not one of the kids that wants to rip open more and more and toss them aside to get more and more!

Colin seemed to really like the Small Soldiers figures that I got off of ebay (they were Burger King toys from 1987, I believe). They're perfect sizes for him and he thinks they're cool. He probably thinks I spent a lot of money on them, too, because I told him that he wasn't going to get any because most of the stuff I originally looked at on ebay were hundreds of dollars! He also likes the Scooby Doo TY beanie baby that we gave him. AC also gave him a TMNT wii game, and the Megamind DVD. He got lots of money, too, which he says he wants to use to buy wii games. We opened a few more things but decided to stop because he was getting that glazed over look in his eyes.

Then it was bedtime and the birthday was over! Well, not really because there are more gifts and cards still to open!



Click on the picture to view a slideshow of Colin's big day!

Happy Birthday to Bob, in Heaven

I'm writing this post several days after my brother's birthday but I'm posting it on his true birthday...

This is Bobby's second birthday in Heaven. The first was truly hard and so was this birthday, but it was a little less intense, I guess I'd say. I truly think the day he was shot, and the day he died, will be harder days for me to deal with.

Gene bought a new American flag to fly in honor of Bobby on his birthday. Last year Dad had suggested that we fly an American flag in honor of his birthday as he was a (ex)marine and had dedicated his life to law enforcement. This year Gene decided that the flag was in too sad of a shape to fly so he bought a new one. He put it up early in the morning in Bobby's honor.

Again, this year, I spent some time upstairs alone in bed and ate chocolate marshmallow eggs. This year I ate ONLY 8 instead of last year's 9! I never knew what to do for Bobby's birthday so I'd traditionally send him a carton of marshmallow eggs since his birthday always coincided with the Easter season and they were readily available and he loved chocolate marshmallow. One year I send him TWO cartons and he said to me on the phone, "What are you trying to do, make me fat?" Ha! He's never been fat or out of shape--ever!

Again, this year, I made a chocolate pudding graham cracker pie which was one of Bobby's favorites. Chris came over in the afternoon and we had dinner and silently enjoyed some chocolate pudding pie.