SMA Awareness Day #3

Today's shirt is from New England Cure SMA Walk N Roll in Hingham, Massachussetts.  This was from the 12th annual walk which took place on May 19, 2012.   I'm sure I have shirts from previous walks there but I must have retired them to the attic.  My dresser can only hold so many t-shirts!  As it is, I have to rotate them halfway through the season so that I wear them all.  

This walk was the first ever Cure SMA event that our family attended. I don't remember which was our first year, but it was before this.  I'll ask Karen as she may remember!  I have some good pics of this day so maybe I'll add them later.  

One of the reasons this fundraiser is near and dear to my heart is because one of the chairs of the event had two children with SMA type 1.  They were around Casey's age and Colin's age. Both kids passed away at early age from complications of SMA.  This family was determined to raise money for research in honor/memory of their kids.  For 20 years they have been holding their Walk N Roll and they have grown each year.  This walk is one of the biggest and most successful for Cure SMA.  We attended this walk many years. It inspired us to start our own walk in Vermont which we did for the first time in 2015.  Our totals are a drop in the bucket to this walk but I am proud to have started a Vermont walk and have united some of the families in the area. Of course, Vermont has a much smaller population than Massachusetts and only a fraction of affected families, but we are proud of our fundraising and the awareness we have spread.   

.....

Today.  Let's see.  Highlight of the day was dissecting owl pellets with our reading group. Yes, you read that right!  In the reading group, we tend to read a lot of non-fiction and at least one of our readings included talking about owls.  We learned that owls eat things like rodents but they cannot digest their bones so it forms inside them in balls of hair and bones such.  Then, a couple of times a day, the owl regurgitates the 'pellet'. We all bought kits that included sterilized owl pellets, a magnifying glass, tweezers/forceps and a booklet with diagrams.  It took us a while to find a date that everyone could participate and today was that day!

Nurse Staci was excited to do the dissecting and I was very grateful for that.  It was very cool but I was glad to be a viewer.  I think the kids enjoyed it.  I KNOW the adults did!!

SMA Awareness Day #2

Day #2 today.  I chose this shirt because it has both of our boys names on it.  I wish I could remember who started this T-shirt campaign but I don't remember.  Bad on me.  But it has the Cure SMA logo on the front and angel and warrior names on the back.  I like it.  See if you can spy both Casey and Colin's names.

What else for today?  I guess the biggest thing is the water leak in the living room.  Ugh.  We've been putting off redoing the ceiling and flooring for years.  We're REALLY good at putting things off.  Well, it may be the time that we have to move on it.  Gene has a call into the plumber but we haven't heard back yet.  We're on a slab so all our pipes go through the ceiling somehow.  Thankfully Casey and I have had a shower today, I'm caught up on laundry and we ran the dishwasher yesterday.  I have no idea what will happen next.  

I have a big urge to declutter in the living room.  So I started.  It's a drop in the bucket but it's a start.  I'm definitely going to part with some books and some knickknacks.  I founds new homes for a few things.  Big news--Gene went through some DVDs and found a few to part with!  Whooo hoo!!!!

I'm in the house alone for a few minutes. Chris was here for a little bit but she has left.   Gene and Casey just headed out for a walk.  A TORNADO watch just came up on our weather apps.  Mind you, we live in north-west, Vermont which is not a hot spot for such weather.  We'll keep an eye on the apps and TV but I doubt it will actually come to fruition.  

Off to declutter some more!

SMA Awareness Day #1

It's been hard to blog since Colin died.  I felt like writing about our lives afterwards would emphasize him not being part of the family anymore since he is not physically with us.  It's true, he's not physically here with us but he is still with us in our hearts every second of every day and in everything we do.  So, I'm going to try to get past that and start blogging again.  The memories that are evoked by reading past posts are so comforting and usually can make me smile.  I want to do more of that. 

Today starts SMA Awareness month. As SMA families usually say "every day is SMA Awareness for us."  Let's then say that this is the month that we try to spread awareness as an entire community.  AND, next Saturday is the world wide candle lighting.  More on that later. 

SMA Awareness Day #1:

Wearing my SMAMomStrong; Stronger Together shirt on this 1st day of August.  

I guess it's not a secret that we have a group for us SMA moms :)  It's a safe place for us to share, vent, support, etc.  So, of course we needed a shirt to reflect what this group means to us.  One of the moms has a business of selling apparel, mugs, signs, etc that was started in honor of their baby boy, Jack.  Jack had SMA type 1 and passed away in 2011.  The mom offered to create logo and produce shirts for our group.  I think they turned out great!  I also have a long sleeved, lightweight hoodie which I look forward to wearing this fall. 

Check out Jumping Jack Apparel and click on the About Us tab to learn more about Jack Jack.  💟

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

Just a recap of today's highlights.

Got two loads of laundry on the line today!  Beautiful day, albeit a bit hot but not unbearably so.  I also did a little dead-heading of my poor plants that are still hanging on and a little weeding out front.  Nurse Julie came at noon and woke up sleepyhead.  They did their thing.  Aunt Chris came in the afternoon.  

Big happenings next door.  Big party that's been in planning for ages as it got postponed due to Covid.  We knew the secret which was that Leland was going to propose to his girlfriend.  Casey has been obsessing over it for awhile.  He has a crush on Nicki.  Aunt Chris, Casey and Julie head over and found a spot outside their yard, under the big weeping willow where they had a good view of the band.  Gene and I headed over closer to when the band was to start at 3:45.  We brought some chairs and some cushions.  It was nice because we had a little breeze, could see and hear well, but we weren't near anyone.  No one wore masks. We stayed for the whole first set and I videoed the proposal.  She said, "yes!" Headed back a little after 5.  Poor Jaxon had his supper 5 minutes late.  

Watching Red Sox now.  So happy to have baseball even if it's a short and very odd season. 

Scooby Doo Quilt from Barb and the SMA Moms

I received a package in the mail the other day.  It was from a fellow SMA Mom, Barb.  Barb is mom to Lucy who has SMA type 1 and lives in Wisconsin.  I guess I've known her since Lucy was an itty-bit.  She is now, hmm, 10??  Anyway, I thought to myself: this is nice.  Barb must have seen that I was looking for filters for Casey's vent and sent me some.  Weird that she insured it." I opened the box.  It wasn't filters.  I opened up the box to find the most beautiful quilt!

I pretty much crumpled to the ground. I was so surprised.  This is such a tough time of year for me, and all who love Colin. It was his time of year.  He loved all things 'scary.' He had every single Scooby Doo VHS./DVD of all the Scooby shows and movies.  He loved Halloween and pumpkins. It will be 5 years in November that we have had this huge hole in our lives of missing him.  Sometimes it feels like he's been gone 5 minutes and sometimes it feels like 50 years and everything in between.  

Can you see the label she put on?  "In honor of Colin Robert O'Neill Loved and Missed."  I always write 'Loved and Missed' when I share photos or stories about him.

The craftsmanship is beautiful. I don't know anything about quilting but I know this is nice work and it's not easy and it's time consuming.  I know she put her heart into making it. I wish you all could see it in person.  The colors, the patterns, the choices of fabric!! I have no clue as to how she quilted it in a spider web pattern--so perfect!

This summer a group on Facebook was started for SMA Moms.  This group is a bunch of moms that share and support each other, with NO drama.  It's refreshing to be with a group of moms of all ages, from so many countries, so many different places in their lives...but we all come together to hold each other up, in the good times and in the bad/sad times.  Thank you.  

Peanut butter and grape Jello pie

Gramma O’Neill gave us one of her Jello cookbooks. I was thumbing through and was freaked out by some of the creations. I pointed out a recipe for Peanut Butter and Grape Jello pie. I was aghast! Gene said it’s like a peanut butter and jelly sandwich.
I mulled that over for a while. I was cleaning out the baking cabinet and found, not one, but two boxes of grape flavored Jello. It started to sound kinda good to me. I read the recipe and it had vanilla pudding and cool whip in it. That sealed my fate. I had him get some more Cool Whip and a graham cracker crust.
First thing I did this morning was tear up the kitchen making this creation. I haven’t tried it yet but there was some extra pudding and grape mixture left so I made two pudding cups of this mixture (same stuff but without the graham cracker and without the peanut butter) and I tried one. Yum.
I’m sending this piece down to Gramma O’Neill. I’ll report in after I have my dessert tonight!!