SMA Awareness Day #19

 I’m writing this while I wait to be called in for my mammogram. Yay for evening appointments. Much quieter. And I had work done for a crown today.  I have the temporary.  Not my favorite thing to do. And we had a contractor cone today to look at our bathroom project and living room/kitchen project.  Busy day. Casey was not happy because we didn’t have reading group today.  BUT, the Red Sox finally won a game!  I think that they had lost 9 or 10 in a row before today.  Yikes!

Today’s shirt is my pink #cureSMA.  It’s my ‘go to’ shirt many times. I also have a pretty pink mask that matches :)

SMA Awareness Day #18

 This is for our buddy, Lincoln.  Lincoln is a cute who was diagnosed with SMA in early 2018 when was only a couple of months old.Thankfully he received Sprinraza pretty quickly so he is presenting more like a type 2, instead of a type 1.  He is a strong, beautiful boy.  He and his family are fighting the good fight and Lincoln is doing awesome!

Today in reading group, I read a fact book on Vermont.  Of course, the book mentioned Champ. Look at the shirt that Casey just happened to be wearing today!!

SMA Awareness Day #8 and International Candle Lighting

 

Another twinning day for me and Casey. I love that he was fine with it. These shirts are the event shirts for our first walk in Vermont in 2015. We had the Sharks shirts made and most of Casey’s team wore those on the day of the walk. But these are special because they are the official Cure SMA shirts and logo for the year.  

I'm going to make a separate post for the Candle Lighting....

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.   

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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.  💟

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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. 

SMA Awareness Month 2018

This is what I came up with for SMA Awareness month this year.  Wearing my shirts that have something to do with SMA and SMA Awareness.  I had hoped I'd have 31 to wear, but alas, I made it through day 26.  I have some shirts that I have doubles of so for the last few days of the month I will wear those--different shirts but carbon copies of some of the ones I've worn already.  I wish I went out in public more, because then I WOULD be spreading a little bit of awareness. I did get out and about some so I feel like I did a little anyway, even if no one looked at my shirt, lol.