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!!

Swimming, swimming, swimming!

Casey loves to be in the warm, salt pool at the Rehab Gym.  Swimming has been the best new activity that we've been doing since Casey has finished with school.  We've been going about every other week.  (we went one time recently for a 'land' visit).

Anyway, it's great for Casey's body, and psyche.  He loves his two therapists, Britny and Jill.  Sometimes they have PT students and he gets double the attention! Mostly, the therapists stretch Casey which is sooo much more tolerable than being stretched on dry land.  Some of it is the distraction of being in the pool, I'm sure, but the heated pool relaxes his muscles which increases flexibility and he gets a better stretch.  I think it just makes him feel good to be weightless in the pool and I'm sure it eases any aches and pains he may be feeling. Plus, he's almost always happy when he's there!

We have also put weights on Casey's ankles and hold him up so it's like he's standing. (his knees are permanently contracted but it's as close as he can get).  It's a little weird for him but it must be nice to be in a different kind of position if just for a few minutes.  Sometimes I will put his butt on my knee and bounce him like a little baby.  I know, I know, but it's fun!

After stretching and 'standing' it's Casey's time to do some work.  The therapist will have him wiggle his legs.  He can do it a little bit.  The other day he was able to click his heels together which he thought was cool.  He can wiggle his shoulders and make his arms move.  I wish, I wish, that the would be able to wiggle his thumb again.  It's been more than two years.  I don't know if he can ever get it back but we keep trying.  Who knows, as there isn't much data on older kids/adults that are on Spinraza but the trend seems to be that the longer your'e on Spinraza, there's more of a chance that movement can return.

Just some cute pics.  Oh, Casey would hate if I said he was cute in public.  Ooops.  Anyway, he chose to wear this shirt today.  His former para educator, Paula, gave it to him as she visited France.  We sent her the pic and told her that Casey misses her.  She misses him, too. 💖

So many feelings

Today is Wednesday, August 28th. Today is the first day of school.  Casey is sad.  It's the first day time he doesn't return to school with everyone as he has done for 20 (well preschool and kindergarten may have had different start dates) years.  He didn't always like or cooperate with school work but he sure loved going.  He loved the commotion and the attention and just being around the kids, staff and teachers.

Today Colin would have/should be, started/starting his post grad year #1. I *think* we would have had him continue as a post grad like Casey did. Although, Casey physically went to the high school and Colin did 99% of his school from home.  Casey also loves to learn.  Colin was a reluctant learner, lol.  Some things interested him more than others, of course.  He was really starting to enjoy cooking and art projects and he was convinced that he should have won at the Science Fair :)   But, there was so much more we could have done with his communication and his expressing his thoughts/feelings, etc.  Not sure what it would have looked like around here.  Since Casey is done with school, he is home. Of course he goes out and has appointments, we do fun things and occasionally he goes to Howard for activities but much of the time he is home.  I can't quite imagine Colin being cooperative with school stuff while Casey was in the next room!!

All this thinking makes me sad. Colin being gone is certainly huge all the time, and gives me such a heartache, especially on what should be a milestone day.

Casey is sad, too, but I didn't harp on the fact that it was the first day of school.  He was aware that it was coming up, of course, but I never actually told him which day it was.

A couple of weeks ago, he expressed interest in buying some groceries for the Milton Family Center.  He has done it several times before.  For some reason, Casey is concerned that people get enough to eat.  He's always telling us to eat. He has zero interest in trying foods, so who knows.  Anyway, the Family Center was also looking for donations of school supplies.  I thought it would be good to shop for both.  Well, Staci, Casey and I went into Dollar General to shop.  Someone was NOT cooperative.  He would say Casey back.  Casey school, etc.  He was loud and not a good picker outer.  But we got through it.  Staci and I had both already picked up some supplies so we added the new stuff to the stuff we bought today and headed to the Family Center.  I asked for Kelly and she came out and made a big deal about Casey :) We will miss her as she is retiring and leaving the state to live with family in Georgia.

So this really showed us how Casey was feeling about his school life chapter ending :(  I hope we can make his next chapter stimulating and fun.

And let me tell you, I have those feelings, too.  It's been weird, these past 6 months, with Casey not in school.  I could kind of pretend that it was a long summer break, but now, when back to school time is, it hits.  I've spent a lot of my time with some sort of connection with the school--meetings, emails, baking for meetings, composing letters, thinking about curriculum, behavior and behavior plans, scheduling, etc.  I used to go to school with Colin some days as well as the meetings, etc.  And I spent countless hours with him on 'TV school' when he was home bound.  Now it's done.  All gone.  No more.  Such a big part of my life that has an end.  It leaves me feeling a little ungrounded so I can imagine how Casey feels.  I couldn't wait to be done with high school and move out and start college.  Casey doesn't have that.  Didn't have that to look forward to. I hope we can keep his mind and spirit happy and growing.

Casey gets his 'live' Beatles fix

Casey has been looking forward to going to the Champlain Valley Fair all summer long--"The Ten Best Days of Summer." (which is actually the symbolic end of the summer since it's the end of August/beginning of September.)  Nurse Julie and he made an unofficial date to go together.  He mentioned it almost every day.  There was to be a Beatles tribute band show and he loves the Beatles so he was excited!

The day finally came.  He has 3 Beatles shirts to choose to wear.  He picked one for day time and one to wear to the show later.

I haven't been to the fair since I went with Colin which was a few years before he died.  I don't think we went in 2014 as there was no good show that year.  Anyway, I can't quite bring myself to go without him.  I have a few of those places/events that I can't bring myself to go to/attend.  I stayed home and binge watched season 2 of Mindhunter and hanging out with Jaxon, Moxie and Nuggie.

Got Casey all duded up and in his chair.  Put his hands in a 'bin-din-do' (Kathy's term for the fabric Velcro straps that can hold his hands in place) and strapped his chair in the front position in the van,and then he and Gene were off. Nurse Julie parked in the Mazza's stand spot and caught their attention as they drove by.  /She followed them in to the fair, so that was good.

Nurse Julie sent me lots of photos so I could keep apprise of their exploration. They met up with Bill and Mrs Wetherbee.  Seems like they were able to do quite a bit before the show started.  Julie had been worried that the handicap area (covered box area) would be full but they had no problem.  They stayed for the whole show, which is pretty good for Casey.  Usually he'd be wanting to go walking around.  I guess all the summer concerts we went to prepared him for staying put and enjoying.

The band was pretty good.  Trevor Contois and Friends, from what I gather, have only been playing the Beatles together for a month or so (I could be wrong) in preparation for this show.  They had all sorts of instruments and a great play list.

Sorry! The pictures are out of order (the ones from home should have been first) but I don't want to mess with the blog too much because I am out of practice and don't want to mess up what I've done.

We received a beautiful, thoughtful gift today. My friend Sheila is a fellow SMA mom. She has never forgotten Colin. She knows that the color blue was his thing. She was painting this and thought of Colin and his love of blue so she finished it to honor him. I love knowing this was painted while she was thinking of him. Right now I have it on the little alter we have for Colin. Some day it may find a different place of honor but for right now I love where it is.

Thank you again, Sheila!

Candle Lighting and 'visit' from Colin

Back in the spring of 2015 I bought a solar decoration for the front of the house. It was a dog, it was blue and it had a motion sensor and it would bark when someone came to the door. I bought it thinking of Colin. We had it by the front door for maybe two years. It stopped barking somewhere along the line. I didn't put it out the next spring so it sat in the back room for a long time. When I was working on the front garden this spring I decided to put it in the garden to give the garden a little whimsy.

August is SMA Awareness month and the second Saturday of the month is the International Candle Lighting which honors SMA Angels and Warriors. This year we thought it would be fun to set up the candle lighting outside in the garden. Nurse Julie and I set up a display of different candle holders and a couple of Cure SMA signs. When it got to be sundown, we brought Casey out and lit all the candles. I took a bunch of pictures from different angles with Casey in the picture and with just the candle display.

Gene, Julie, Casey and I were all standing by the display when out of the blue we heard, “Arf, arf. Arf, arf.” WAIT! It was the blue dog which HASN'T barked in years! I immediately thought of Colin sending us a sign. I'm sure it was him. No one had been anywhere near the dog to set off the sensor, and it seriously hadn't barked in years. It happened a couple of times and I tried to catch it on video but I was never quick enough. But, Gene, Julie, Casey and I heard it. It gives me chills when I think about it.

PS  I just went outside and took this close up picture.  No barking.  I think Colin responded to all of us being there together AND the light and the love from the SMA community lighting their candles...

Sandbar with the fam

Peggy is babysitting Conor (2) and Eddie (13) while RJ and Tiff have a little time away.  She's been wanting to bring Conor to the Sandbar so today was the day.  Get ready for many pics!

It was a beautiful day. Warm and breezy.  It took 3 vehicles to get all of us and our stuff to the park, lol.  Eddie and Steve rode together, Julia, Peggy, Conor and tons of stuff in her car, and Gene, Chris, me and Casey and his stuff in the van.

We had a picnic lunch of turkey and provolone on rolls, chips and dip, pretzels, Doritos, pickles, grapes, cherries, strawberries, mini blueberry muffins and brownies.

Casey was a little bummed that he couldn't get wifi there so he couldn't use the Internet.  Peggy had radio and Gene was able to get the Red Sox game so that appeased him.

Conor is a funny, busy toddler!  He wanted to explore everywhere.  I think we all took several turns walking around and exploring the park with him.  He and I went all the way to the playground.  I helped him climb up the 'stone' wall and then slide down the slide (feet first!).

If you know Peggy, you know she is a doting Gramma and loves to buy coordinating things...so Conor had a whole shark set up:  shirt, swim trunks, chair, tent, etc.  So cute!  Somehow Gene, Conor and I wanted to see if we could fit in his little popup tent. Guess what?  We fit!

Eddie had a grand time and spent most of the time in the water. He found some kids his age to hang with and they looked like they had a good time.

I hadn't been to the Sandbar in years.  It was busy but not too crowded.  We really didn't have anyone close to us so it was pleasant. The worst was that Julia stepped on some gum and I think I stepped on a brownie that Conor had dropped, lol.

We were pooped out when we got home.  I must have gotten some wind burn because I was freezing and put on a long sleeved shirt and socks and it was just under 80 degrees!  I feel Fall in the air, especially in the evening and overnight.  I love the Fall but will miss the summer days.

Speaking of Fall, Casey is upset that he will not be heading back to school.  He has had school every fall (and pretty much throughout the year) since he was 6 months old.  It's been a big adjustment for him and it's hitting him pretty hard right now.