SMA awareness day 4 SMA candle lighting event

SMA Candle Lighting

Saturday, August 12 will be the annual SMA International Candle Lighting. You can click on the hyperlink above (I think!) to see the Facebook event.  The details are below. 

August is SMA Awareness Month, and we choose the second Saturday in August to reflect on those who have lost their battle with Spinal Muscular Atrophy (SMA) and honor those living with SMA.  We hope to spread awareness and unity to the families living with it as we all join spreading the light of our candles around the world on Facebook.

Join us by lighting a candle at 8pm (your time zone) @sunset on Saturday, August 12, 2023. Take a photo and post on this event page. #SMAawareness #cureSMA

To learn more about SMA go to www. curesma.org 

Please share with everyone you know to light up Facebook on Saturday, Aug. 12 @ 8pm from wherever you are.

We do this every year as a family. Sometimes we’re inside. Sometimes we’ll go outside. It’s always a little different for us each year. There are some families and communities that go big with this!  The Reeds in Ohio host a big event and they’ve been streaming it so we usually tune in. Some SMA families attend and also some of the docs and researchers at Nationwide Hospital. They do a beautiful job. 

It’s a weird thing to wish for, but I wish there were more families around here that would be invested in hosting/attending some events like this. It feels kinda isolating here sometimes. We haven’t found anyone that’s really like Casey in school, the Howard program or from seeing people around town. Sigh. What I mean is we haven’t found anyone with a diagnosis in which the person is similar to Casey in that they use a wheel chair, are trached, non speaking, and uses a communication device…

Here are some pics from last years. The 2014 montage is the last candle lighting with Collie. 💙💔

SMA Awareness Day 3

 

Made by Cassandra Wilson 

Cassandra is an SMA mom who tragically lost her son not too long ago.  He was such a strong, cute boy, but circumstances cropped up that ended up taking his life.  (that is a weird way to put it but I never know what to say, even when I have lost a child ultimately to SMA as well).  Anyway, she has been making these awesome profile pics.  I love this one!  I may have her do one for Colin, as well.  He is definitely my super hero even if he is no longer on this earth.  

Napping and Day 2 SMA Awareness Month

 I am a napper. A happy napper. My dad was a napper. Sometimes when I settle in for a nap I automatically lay on my back with my ankles crossed and mg hands on my chest in a certain way and my head thrown back a little-just like dad. I can picture him in many places napping.  Couches in different houses, beds, bunk or deck on our boat, etc. 

I was nurse Mom again last night so when I take a nap the day after I’ve done a night I don’t feel as much guilt as I do when I nap when I wasn’t nurse. So I had a good one. The weather was cool and no humidity so I thoroughly enjoyed it. 

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Casey has been into bagpipes again. He watches videos with parades and he watches the Coronation. Nurse Staci still sits next to him when he’s blaring his videos. I can only take so much so I usually find some task to take me away to another room 😂. 

Casey is not a napper. He did nap the last two times that he had the infected eye. He was miserable. Another time he napped was after his Spinraza injections. Also, I remember he napped when he broke his leg. I knew something was very wrong when he fell asleep that afternoon!  (This was years ago and I remember it vividly). Oh he also will nap occasionally around the time change-he fell asleep at school once or twice during the time changes!  

Gene is not a napper but he will go upstairs in the late afternoons and watch a little tv, do some work and lay in bed for a bit. 

All you ever wanted to know about the O’Neill napping habits, and more!

Thank you B4SMA 

MJ and Brenda are also resharing some graphics from past years. 

Today they shared our Collie 💙

Day 1 of SMA Awareness Month

 And I’ve got nothing. I’m the past I’ve worn an SMA t-shirt every day of August and posted the pic. I’ve blogged every day of August one year. One year Casey wore an SMA shirt every day and I posted it. But I’ve got no new ideas. I’m not very savvy with graphics and fun stuff like that so that’s out.  I could do a fact a day but that’s a lot of work and others do things like that so I’ll leave it up to them ;). 

Not much exciting happened today. Except, I opened a gift from Shannon and it was very cool!  There is a video of it but I don’t know if I want to out that here. Maybe I’ll try to get a screen shot from it.  

Casey was a good sleeper last night. I wasn’t :(. I kept waking to check on him.  And there was a horrifically strong skunk smell coming in the windows. I finally closed them. The night was perfect for sleeping and I was not happy to have to close the windows. 

Casey opened a box from Shannon and Addy that had all sorts of fun Christmas in July crafts. He laughed and laughed. Book group is celebrating Christmas in July/August next week. We’ll be able to do a craft a day plus do a couple of crafts on Thursday while we zoom. I’ll be sure to post some pics. 

My birthday surprise!

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 #17

 

Don't look at me.  Look at the shirt, lol.  I was night nurse last night and I'm feeling it.  We've had good night coverage lately so I was a little out of practice being night nurse. Casey was actually a pretty good sleeper. He flipped every couple of hours, which is normal.  Pulse ox only beeped once when the probe was coming off his toe.  NUGGET (orange cat) was the biggest interrupter of my sleep.  He came in a bunch of times, harumphing, and wanting me to feed him.  I got up and fed him twice!  He never wakes us when we're upstairs.  

Casey was very excited to finally get his hair cut.  "Dawn 23 Bartlett Road, Monday, hair" is what he was saying all weekend.  

This is the majority of what she cut off of him  

He still has longish hair and he still has some curls.  It looks a lot better. So far he's happy that it got lopped off. 

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 #6

I didn't think too much about which shirt to wear today because I just grabbed the top of my pile because I was rushing to get ready as Casey had an appointment at the hospital this morning. But, it is one of my favorites.  I have this orange #CureSMA shirt and a blue one.  I had a purple one but I trashed it with bleach so I just ordered another.  I hope it comes before the end of the month!   Orange and purple are the colors of Cure SMA so I like wearing them, especially during SMA awareness month.  

****OH and this Saturday is the annual candle lighting!****

August is SMA Awareness Month and we choose the second Saturday in August to remember those who have lost their battle with Spinal Muscular Atrophy (SMA) and to honor those living with SMA. We hope to spread awareness and unity to all families, especially during this most difficult time. Join us to light a candle and spread the light around the world on Facebook. Light a candle from anywhere at sunset on Saturday, August 8, 2020

Here we are at the hospital. Casey had an infusion today to help increase his bone density and treat his osteopenia.  Years ago he and Colin had an infusion of a medication that took hours to deliver and had to be given over two days.  This medication was given over a half an hour and didn't require any blood test before hand,either.  The nurses were very nice and efficient.  The worst part was waiting for the IV nurse to arrive.  She got him on the second try.  

Gene dropped Nurse Staci, Casey and I off and he drove somewhere and found some wifi and did some work.  He also picked up a pizza from Marcos :) We arrived at 9:45 and hit the van by 12:15 so that's not too bad.  

Casey had a shower to get off any hospital germs.  I took a quick nap. I am always so drained after being in that place.  OH, we saw our old nurse, Karen, so that was cool. 

Casey started feeling yucky.  We were warned that after the infusion you could feel symptoms similar to having the flu; achy, tired, etc.  I hope that since he has had a similar med before that it wouldn't affect him but it did.  Each time he gets it he should have less affects. 

Reading group was fun today.  We have a new participant and it was great to have her.  I think she'll be a good fit in our little group. 

SMA Awareness Day #5

Today's shirt is brought to you by Laughing at my Nightmare.  Shane Burcaw is a guy living with 
SMA type 2. To sum Shane up in a paragraph on this blog would be shameful.  He is so much more than one little paragraph in my blog!  He shares everything about his life with SMA; real and raw, the good, the bad and the everything!  He is an author, blogger,YouTuber, Instagramer, motivational speaker, fundraiser and advocate. Casey and I read his first book together and Casey was very enthralled.  He started his second book but Gene kind of put the kabash on it for several reasons.  I will revisit his reasons and then we will decide if he should continue reading it. I won't get into the why's here...But anyway, check him out. He is VERY funny.  He and his cousin, Sarah, started the organization back in 2012. The organization has grown wildly since then. It might be fun for you to check out their website. And Definitely check out Squirmy and Grubs on YouTube. Shane and his fiancee (how do I put the accent in???) candidly share their life together; all the challenges and the good stuff, too!

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I went to the dentist today.  They are super duper careful.  I didn't get polished!  I guess that the polishing spews too many droplets so they are not doing them. Thanks, Covid. Stinks. I also will be getting a crown. I've been chewing on one side of my mouth for 6 months. At least I haven't been sensitive to hot and cold like last time.That was awful. 

Casey had a better day today.  He was more his normal vocalizing self and not the crazy yelling like yesterday.  We ended up changing out his trach at bedtime last night because he sounded froggy and I could't clear him.  He had a blob on the outside of his trach.  Wondering if that bugged him and triggered a bigger than normal ANS 'storm.' I've heard that some people get agitated or grumpy and feel out of sorts when they have a storm. 

This afternoon, instead of book group, a few of us joined the Norfolk, MA library for a book reading. Unbeatable Betty is a kids book about the first woman to win a gold medal in track and field in the Olympics-1932!  It was a good reading and discussion.  I love that libraries have fun things like this. I have to remember to look at the opportunities our library has for fun things. 

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.