30 Days of Thankfullness: November 3: A Color

Thankful for a color.  Some of these prompts are very weird! I think I will say blue.  Yellow is my favorite color but I am thankful for blue.  Colin's favorite color was blue and he could say the word blue.  So anytime any question could be answered by blue, he would say BLUE!  I loved hearing him say the words that he could.  I miss him so much. 💙💙💙💙💙💙💙💙

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. 

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.  

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...

4 Years

Today marks 4 years that Colin has been gone.  I just noticed that his picture is crooked.  Ooops.  It is a tough day to get through.  Period.  But I wanted to be less outwardly sad for Casey's sake.  He is sad, of course, but he doesn't seem to have as hard a time as Gene and myself and other family members do on this day.  So I wanted to try to be normalish for Casey.  Everything I did today was with a heavy heart but I made it through the day.  

Peggy made this montage to honor Colin.  Such cute pics!!

Casey, Gene and I wore our We Love Colin shirts.  Didn't get a pic of Gene.

This was my Facebook post:

Nothing profound to say today. Just trying to get through the day. Miss my ”Bok Choy Boy” so much. Trying to be open to signs from him. Have received two already. First, I was nurse last night so I sleep in a bed across from Casey which was Colin's spot. The bed has lots of Colin's pillows and stuffies on it. This morning my hand touched something. It was ‘baby chick’. Aunt Julia had made Colin a red stuffed chicken with 4 baby chicks that go in pouches in her sides. Red chicken was way at the bottom of the bed last night but somehow one baby chick landed halfway up the bed by my hand 💙. Second, I was tearfully scrolling through Facebook and my Windows went away and there was my favorite pic of Collie on my desktop looking at me. I figured Windows had crashed, but it hadn’t; the tabs had just, what do you call it, gone down to the bottom. 💙

Colin Robert O'Neill
April 4,2001 to November 10, 2014

The two signs that I got early on were very cool and I was thankful.  I was hoping for more,  I was trying to keep my heart open.  I belong to a Facebook group where I shared about Colin.  Someone posted and said to watch for dimes as they can be a sign from Heaven.  I was kind of skeptical since I believe Colin has sent me pennies before.  Much to my surprise, not long afterwards, I was picking up some laundry that Gene had thrown in front of the washer and look what was there!  A single dime!  Gene always empties his pockets out upstairs.  He tends to have bills, coins, pens, receipts and all sorts of things in his pockets and he likes to be the one to empty them (probably so I don't steal his cash, haha, and I don't throw out his precious treasures)  I'm pretty sure it was a sign.  

Christmas Cards

Christmas cards are finding their way to our mailbox, so thank you. 

Christmas 2013 was the last Christmas that we had our Colin physically here with us.  It was also the last time I sent out holiday cards.  I enjoyed the whole process of holiday cards.  Making my list, joining a card exchange with SMA families, picking out cards, thinking up how to dress and pose the boys, and trying to get a decent photo :), writing out the cards and envelopes and even putting the stamps on each envelope. 

But without Collie, it's too hard.  I can't imagine doing all the above and not having Colin included in our picture.  I just can't. 

So you won't be getting a card from us this year (or in the previous 3 years)  Thank you for all of those that continue to send us cards without us reciprocating.  I know some of you have asked, especially our first year without Collie, if we wanted to get a card from them--most likely with a picture of their family.  I said "yes."  It was hard to see the cards come in that first year but I still cherished each one. 

Colin Sign?

Casey is interested in the Mayflower today.  You know, since Thanksgiving is near...Anyway he was looking at things on YouTube.  I was thinking we had a book on the Mayflower so I went to look on Casey's bookshelves.  Turns out I was thinking of a book on Columbus--only a hundred or so years off, haha.  He didn't seem interested in the Columbus book so I stood there to think for a moment what else we might have.  I saw that there was a bookmark on the floor.  I picked it up and went to put it back on the top shelf where there were a bunch of other bookmarks.  My attention was drawn to a colorful turkey made from construction paper.  My first thought was, "That's weird.  How did Casey's 'Thankful Turkey' get here?"  Then I noticed that taped to it was a pressed tree leaf that we pressed and laminated years ago.  Then I saw it was Colin's 'Thankful turkey' from 2008.  I have boxes of holiday decorations that used to take out religiously prior to each holiday.  After Colin died, all of those boxes have stayed up in the attic except for Christmas.  We have to decorate and celebrate Christmas for Casey's sake.  I have no clue how the paper turkey got on the bookshelf--especially since I had just replaced an old book case with this new one that I painted a few weeks ago.  I took ALL the books off of the old shelf and went through each one and made keep and give away piles.  I totally would have seen the turkey and leaf when I was going through everything.  Sign from Colin???  I like to think that Colin was with us at this time.  💙💙💙💙

 I just put Casey's 'Thankful Turkey' and Colin's 'Thankful Turkey' and the pressed leaf up on the door to the yellow room.

 Colin's 'Thankful Turkey' from 2008

 Casey's 'Thankful Turkey' from this year.

 The bookcase where I found the turkey and the leaf.


#Loved and missed

Angel Day (3)

Three years ago our family of 4 became a family of 3--at least on this Earth.  I will not stop recognizing being a family of 4.  Not everyone will/can understand this but some will because I know too many other families that have experienced a loss like ours.  Until the majority of the world experiences this kind of loss, we will be in this minority and deal with it in any way we can.  Much of the world thinking they know how we feel, or wonder why we are different people than before, or not knowing how to 'handle' us now that we have lost a child.

I've neglected this blog since we lost Colin.  In a way I wish I had kept up with it so I could look back and remember those fresh days, weeks, months.  But it would have been too painful to sit down at a keyboard and write feelings, observations and what and how we were doing back then and it would be too painful to re-read, I'm sure.  I've been trying to talk myself into doing this for months now and I kind of promised Colin I would get back to it as a way to document our life and to get down to 'paper' memories of Colin.

Grief.  I don't even know if I'm doing it right.  I know I'm a stuffer; I don't tend to show the feelings of my heart to the outside world--even to those closest to me.  I have a couple of friends that I talk to on the phone and they know if I ever get quiet, I am just not able to talk at that moment and tears are probably rolling down my face.  They know.  Other people in my life can almost see the pain in my heart (I'm only talking for myself here but I'm sure it's the same with Gene and Casey) and I know it hurts them very much and they don't know what to do or how to help.  I don't know what I need either.

Every second of every day I have a hole in my heart that physically hurts and sometimes I wonder if an Xray would show that there is certainly a piece missing.  Some days I laugh and smile and feel happy.  Joy-that's another thing.  In a weird way I have experienced it with Casey when he accomplishes something or when he laughs so hard he cries, but even that Joy is tampered.

That's about all of that I can write right now.

I want to talk about today.  "Wear Blue for Colin" is a Facebook event that our dear friend started for us 3 years ago.  Each year it is shared among our friends and family and friends of friends, and--you get the idea.  My Facebook feed is filled with people I love from near and far, and those that I may know through the SMA Community and/or the Internet.  People have shared their remembrances of Colin, sent their thoughts and prayers to us, and donned themselves in blue, or somehow conveyed that they have thought of our family today.  Wow.  It's pretty powerful and there are no words to express how much it means to have our Colin thought of and remembered.

I love this picture of Casey at or Cure SMA Walk N Roll 2017 with the picture of Colin on his chair behind him.

5 prescriptions later...

Took Colin in to see Dr. Queyquep this morning.  We came out with drops for his eyes, drops for one ear, antibiotics for the slight crackles in his lower lobes (trying to ward off a true bronchitis), possibly two nebs for his lungs (wanted Xopenex but it requires a prior auth so we may have to do one or two nebs of Albuterol before we get the Xopenex).  And, we're to give him probiotics twice a day.  Hmm, I guess that's it.

Funny thing is, I thought he was much better today.  I thought we'd just get something for his eyes, which are red, watery and producing a goopy green discharge.  But one ear was full of debris, very wet and retracting.  I asked her what retracting meant in this case and she said that it was kind of pulsating due to the pressure.  Ugh.  And, since he was starting to have some crackles, we want to ward off any secondary infection.  Oh, and his temp was 99.9 at the office and he was still under the influence of ibuprofen, so I guess we'll keep up with the rotating schedule of Tylenol and Ibuprofen. 

As promised, I got him a chocolate munchkin from Dunkin Donuts so it made him happy. 

Long story, but he was supposed to make salsa today during his Unified Arts class with Mel.  But Mel had to cover for a para that was out, so we decided to let Colin sleep in a bit and have Priscilla come at her normal 8:50 time.  He'll get to do his 'cooking' tomorrow.

Casey is off to his outing to the UVM campus to visit the Francis Colburn Gallery (William Science Hall) and the staff art exhibit currently showing at the Davis Center.  I hope he has fun.  It could go either way--you never know with him!!

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Casey was nervous when he first got to the gallery but then he settled in.  Julie sent me these pictures. 

He said he was confused about the art.  The picture of the brain interested him but 'confused' him he said.  At least he was commenting on the art, which is what we want :)

snow day for Casey and belly brace prep

 I declared a snow day for Casey today.  No public schools were cancelled in Chittenden County but it looked pretty nasty out to me and was only supposed to get worse.  Nancy H came and she masked up because she had been fighting a cold.  She only stayed until noon to go home and get rest and to beat the weather. 

Casey got up for a while and read some of his ebook; Speak.  Watched some TV, some football, etc.  I think he thought it was funny that he didn't have to do school and Colin still did. 

I made another batch of rugelach today and I will say they were even better than last batch.  I think there was more apricot in them and I think I had a perfect amount of nuts/cinnamon/nutmeg.  It also helped that I used the Penzey cinnamon Peggy gave me, and also the Madagascarian vanilla. 


Deb from Biomedics came today at 1:00 so Colin got to finish school a bit early.  No sweating or high heart rates when she worked on him.  I think he is finally getting used to her after all these years, ha ha.

We've decided to go with a 2 piece belly brace/ TLSO.  We've always used a one piece that has Velcro straps in the front and a cut out for his g-tube.  Now that Colin is getting bigger it's pretty awkward getting him into it so we're opting to try this.  He'll have Velcro straps on each side to fasten and hold him snugly in.  We'll have the first fitting in a couple of weeks and Deb will mark out the g-tube hole and cut it out at the shop and do another fitting.  Colin was glad to pick out a new print for his belly brace.  We'll keep it a secret and unveil it when he gets to keep it :)

I always encourage Karyna and Colin to do a 'non-screen' activity after school before he puts his face back into an ipad, computer or TV.  So today I started pulling out some games and things that I want them to focus on.  I'm trying to get Colin to use the abstract thinking/predicting part of his brain.  Today they got to choose between Mr. Potato Head Yahtzee, Red Sox/Yankees Tic-tac-toe and Scooby Doo concentration.  Colin picked Yahtzee.  He used to play it with Nana Lanza so we had a moment when we made our sad sounds and missed her.  I can just hear in my head how they used to play that together and it was so cute.  Anyway, I made sure to let Karyna know that Colin had to make all the choices whether she thought there was a better move to make.  She could point out something if he didn't pick it but had to honor his final choice.  He won :)  

Colin has played some Tic/tac/toe before but I don't really know if he can strategize or if he just picks random spaces.  So, we'll see.  And, I know he has a good memory for some things--like movies, or wii games, but not sure if he will use that memory in a matching/concentration game so we'll work on that, too.  I'm going to make them a special box and maybe even build in some rewards for them for completing these activities.  They'll get a kick out of that.

Middle School is exhausting!  Went to school today with Colin only for the morning.  No nurse today so Priscilla (para-eduacator) rode in the back with Colin over to the school.  She knows most of his blips and beeps so we're confident to do this.  That said, it was more stressful being there without a nurse but we did it!

Colin has his pictures taken and the Lifetouch photographer was very kind and took the time we needed.  It was great doing it on re-take day since there wasn't the huge mass of kids and confusion like there is during the initial session.  Still won't be the best shot but it's done.  I let him have his 'nose pickers' (bipap) on for the first time.  Just not worth the stress on him and me to try without.

Saw a bunch of our teacher friends.  Picked out a couple of graphic novels in the library (a Scooby Doo and The Olympians:  Zeus.

Then we headed upstairs to meet the crew to practice the evacuation plan.  The Middle School core classes are all upstairs so we needed to practice.  Saw some more teachers and school friends while we were waiting.  Colin got to show some of the teachers and kids a picture of him in his scary Halloween costume so that makes him happy.

He got very nervous and his hands were dripping with sweat when we were preparing the sled but did fine and even laughed.  We have a 6 person team and could do it with four if we had to, but it wouldn't be pretty :)  We have a huge sled that he lays on and we put his vent in there with him.  4 people carry the sled down the stairs and Priscilla is the door opened and carrier of suction.  I'm the carrier of the cough assist and rest of the equipment.  It's quite a production but we can do it fairly quickly and if we had to, I'd just grab Colin and put the vent on my back and carry him out.

After that, we still had time to catch a good chunk of drama class.  Colin got to see two groups perform.  He commented three times using his DynaVox!  Very proud of him.  Mel prompted him to pick his pronoun, verb, etc., and he said, "I liked the fighting."  "It was good."  and "It was funny."  He clicked the speak button right on cue.  Proud of him.

Many of his 'regulars' chatted with him and were glad to see him.  It still stinks when people who don't know him stop in their tracks and stare at him.  We try to take the opportunity to introduce him to new people but circumstances don't always let us.  But all in all it was a good day.

Got Colin inside and in his school spot.  Priscilla took a quick break and then they finished off the afternoon of school via VGo.  I was so pooped out that Gene watched Colin while I took a quick nap.  Nugget and I snuggled and had a power nap together.

Casey had an okay day after a meltdown in the morning.  Long story but they're trying to find a different spot for him for first block.  He had been going to the cafeteria but we were trying to find a spot where he could have some privacy to take off his coat, use the cough assist, etc., and he's balking.  He REALLY, really wants to be in the cafeteria with the big study hall.  Not sure how it will end up but for now he'll be using a class room where there's a small group going on so he won't be totally away from his peers.  This whole year is a work in progress, for sure.

So now Colin is watching a DVRd Celebrity Ghost Story, Casey is Google Mapping with his DynaVox while watching football on his ipad.  I have to go start the boys' five o'clock feedings and feed the dogs and cats---Feeding time at the Zoo!!

A Crappy Day turned Good

Today was the field trip with Colin's team to Northern Lights Rock and Ice.  It's an outdoor leadership and challenge facility.  I was a little hesitant for Colin to attend because he probably wouldn't be able to much more than observe.

Our PT found out that there was a giant swing that she thought he would be able to do.  I stewed over it.  Colin has done the giant swing at camp and it's fun but the way he's positioned wasn't ideal.  And, at camp there are docs and RTs and nurses and outdoor extreme people who all know their jobs very well and take them very seriously.  A lot of time is spent on safety and lots of precautions are taken.

Long story short, it was decided that Colin would use his evac sled or stokes sled and be able to lie down in it with all of equipment.  We tried it at home and took pictures.  Our PT sent the pics to some of the leaders so they were aware of what entailed Colin to be able to swing.  And, she brought the sled over early so they could see it.  So, that was settled.  We planned to have him go up early so we could make sure he got his activity done before we all pooped out.

Leading up to the day Colin was nervous.  He even told Priscilla that he'd rather stay at school and do MATH!  But then he got used to the idea and even thought it would be fun :)

OH, and the field trip day coincided with Nurse Nancy's last shift with us.  After 12 years of working with Colin she and her husband are leaving Vermont and moving to Florida. 

As I said on my Facebook status:

"End of an era here. Nurse Nancy Lanza just finished her last shift here. She was with us for 12 plus years. She started doing baby visits with Colin and eventually became a shift-care nurse when we started getting nursing coverage for him. She and her husband are moving to Florida. We are all very saddened here. We'll get to see her one more time on Tuesday at a little gathering for her but I won't want to say good-bye then, either. Colin says she'll miss her but I don't think he has a clue as to the huge hole that will be in his life without her. She was the best video game player and they conquered lots of Nancy Drew PC games, as well as others. She knows him like a book (well, as much as anyone can figure him out, lol!) and it will be tough goings without her. Of course, we wish her the best  :) "

Colin's teachers wanted Colin to go on the bus with the kids so Nancy, Colin and I got a ride over to school in the van by Gene.  He was going to drive the van up to Northern Lights later on so we could leave earlier than the kids.  We got to school and went to the bus.  Yay, there was a handicap bus!  But, don't get excited, the lift didn't work.  Tried and tried.  The bus driver said he had been taught to use it earlier and it worked.  I asked him if he knew how to use it manually, and I pointed to the bar that you use.  He picked it up and wanted to know where to put it.  I won't even go there.  I said forget it.  

And, yes, the bus company will be getting a letter from me ;-)

The kids were all on the bus and restless.  Priscilla was on the bus with our bags while we were outside with the teachers and the bus driver.  Priscilla came out, at one point, and said, "Unfortunately, one of the kids wanted to know why Colin had to go."  I was pissed.  Kids suck sometimes!  I said, not very appropriately, "Who is it and I'll kick his ass!"  She said it was a girl.  Huh.  I'd still kick her ass.  But, being the diplomat that she is, Priscilla didn't tell me who it was.  I was very frustrated and sad and my emotions were already running high because of it being Nancy's last day.  Colin was undaunted and was just his happy self.  I called Gene and had him come BACK to school with the van so we could drive up.  Colin's teacher really wanted to wait and have them send another bus or fix it because "we're a team" and all that and I appreciate that but I didn't want the kids to have to wait any longer.  






Gene picked us up and we dropped him back off at our house and we headed up to Northern Lights.  We've very lucky it's only about 15/20 minutes from home.  We got there not too long after the class.  Christina, the PT, met us up there.  Colin and Priscilla joined the group while Christina and I chatted with some of the leaders/guides.  They were very awesome people--reminded me so much of the staff at Double H.  Young and enthusiastic and very in tuned with the kids.  AND, they were very excited to include Colin and get the kids to understand INCLUSION.  

We broke up into small groups.  About 6 kids in our group along with Mr. Dabritz the humanities teacher.  Started off with a team building activity.  The kids had sections of half pipes and they had to work together as a team to pass a ball around the circle.  Lots of talk about teamwork and citizenship and talking things out and including every one. 

Colin was also able to participate on the Whale Watch.  It's a super huge, rectangular, wooden teeter-totter.  They lifted Colin right up onto it and set him in the middle and put his brakes on.  The kids had to get on one by one and try to balance it by working out who should go on what side of the teeter totter.  They never did get it balanced but had fun trying.  

Colin got to watch the kids climb poles and leap off and that kind of thing.  Then when the kids were still doing an activity, we went over to the swing area and got Colin settled on his sled and all strapped in.  Then the kids came over and the leader had everyone grab onto the sled and lift Colin up so he could get hooked.  Then they all gathered around and watched him swing!  Colin liked it and enjoyed swinging high in the air and flying through the woods.  When he was done, he said, "out, out." Then the leader had the kids hold the sled over their heads while he got unhooked.  When he got down, everyone cheered.  Again, they talked about inclusion and how people have different abilities but everyone wants to be included.  

That was that.  It was now lunchtime and we were ready to head home.  Gene headed out to go to lunch with Grandma, Grandpa and Julia, and Uncle Bill and Aunt Jean who were visiting from Texas.  We headed home to unpack and unwind and get ready for Priscilla to come back and finish the afternoon of school with him.  

I hate that Colin (and Casey) is so different than his peers.  I honestly think it hurts me more than him.  He isn't a very social kid but I'm sure he'd love to have a friend who could understand him and hang out and play wii with him.  Someone who would not have any qualms about being around someone who needs to be suctioned, repositioned and basically needs help with everything.  But then, again, he's never known anyone like that so maybe he doesn't know what he's missing.  I wish I could be that friend, and in a way I am, but I'm still a parent but I am his best friend, too.  Casey is his friend/brother, too, but there are many times that Casey annoys him so there are times he'd rather be with me, than Casey, ha ha.

Another thing that Colin has going on for him is that he is emotionally younger than his years.  In so many ways he is much more naive than his peers.  He tends to like books, movies, shows, toys, that most kids of his age have long forgotten.  That's okay with me, too.  I get to keep my boy younger for a little while longer.  AND, we don't have to deal with the drama of being a pre-teen.  But, then again, Colin has been exposed to so many more medical things than most of his peers.  How many kids his age have been taken in an ambulance and rushed to the hospital because they 'plugged' and went into respiratory arrest.  How many kids have been intubated and spent weeks in the hospital in the PICU.  How many kids need to use numerous machines every day to stay healthy.  So in this way he is more mature than them.  

All of these things add up to my boy being my boy so I'm okay with that.  I just wish I could have a tougher exterior so that I wouldn't think about what others think of my boy.  I'm okay with him. I wish everyone else could be.

Back in the stander again

We're hoping to get Colin back on a regular standing regimen again.  It's tough when he has to get his academics in as well as stretching and other PT activities, oh my!

Colin has the 'suds'

From my Facebook status...I want to add this here so I remember when he was sick and how he handled it.  

"It's official. I'm declaring that Colin has the 'suds.' (Amy and other Sponge Bob watchers can relate :) ). So far it's all in his head. He has a headache, lots of oral secretions and stuffy nose. Thankfully, it is NOT in his lungs and we'd like to keep it that way :) Casey will not be going to see Les Mis tomorrow with school. He's going to go out in the community and bring his DynaVox to UPS, shop for shoes and shop in Hannaford's. He'll work on driving his chair in the community and work on some math skills. No need for a power struggle."

Scooby Doo is in the dog house :(

For the first time since Priscilla implemented the Scooby Doo behavior plan--Colin lost his 4 Scooby Doo snacks and Scooby was sent to his dog house. Colin would not stop obsessing about Megamind. He was watching it (for the first time since he saw it in the theater) this morning and wanted to finish it so badly that he couldn't stop saying, "Megamind, Megamind, Megamind." So, he lost his snacks one by one. This means no gaming this afternoon! This could be rough for ALL of us!

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!