Friday, November 10, 2017

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.

Monday, September 22, 2014

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!!

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

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 :)





Tuesday, August 26, 2014

SMA Awareness Day 24: Zoe's Race

We did it!  It was worth getting up extra early to make it to Burlington for about 8:45 AM.

I had tried to get things organized but getting home so late last night, I didn't feel like doing a whole lot.  So it was a scramble to get things, unpacked and repacked.  Nancy had came around 7:45 and we started getting the boys up and ready for the outing.  They were not happy but survived :)

Oakledge is a beautiful spot.  We don't go very often but it's where the accessible tree house is so we do like to come down when we can.  Picture perfect day, although it was HOT already.




Nancy and I worked on registering (I had only figured out how to register myself on line) and get our numbers and shirts.  Kind of confusing and crazy but we got it done.

We hung around, did a little carb loading, ha ha, for our walk.  It's a perfect set up for a walk/run.  There's the pavilion with bathroom facilities, picnic tables, and power.  There were bagels, and cream cheeses, cut up oranges, coffee, water, etc.  There were several families with special needs there.  I recognized a couple.  Spoke with Cathie Buscaglia, who is the Director of Children and Family Services at the Howard Center.  The Howard Center teams up with Zoe's Race and raise funds for families in the Howard developmental program to get modifications done to their homes to make them accessible.  This is how we got our nice wooden ramp out front.

Casey had a mini meltdown but recovered.  He couldn't really use his DynaVox so I think he was pissed.  

They had a corny band playing and a young man sang the national anthem.   Then those doing the 1 mile lined up.  It hadn't been advertised as such, but the 1K was a run BUT people walked as well.  There were mostly kids doing this one and I don't think it was a timed race but I could be wrong.  We stayed in the back of the pack and took our time. Gene drove Casey in his power chair and was ahead of us.  Nancy, Colin and I took up the rear.  We took turns PUSHING Colin in his manual chair and it was pretty tough.  We were on a paved path, which was nice, but Nancy and I are not the most in shape people so we struggled.  AND, did I say, it was HOT!  

Somehow, Gene missed the finish line with Casey but Colin, Nancy and I made it across and Colin got a medal :)  I made Gene and Casey go over and do the finish and have Casey get his medal. 



After the race we went to the tree house but didn't stay for more than a minute because there were two men in sleeping bags laying there with bags of stuff and it didn't seem quite appropriate to be there. Bummer.

So we waited for the 5K runners to come back.  In the meantime we had some Ben & Jerry's ice-cream, and Gene had some yummy corn on the cob (I had a bite).

Then it was time to go.  We were hot and pooped out.

At home we just hung out and relaxed.  I had to prepare formula.  Nancy did the beds, and that was about all that got done.

Saturday, August 23, 2014

SMA Awareness Day 23: Daughtry and Goo Goo Dolls at the fair

We're happy and pooped!  We all had a good time and had no medical snafus (Colin did not get bit by a pony, we didn't forget any supplies, we didn't drop any respiratory stuff on the ground, the formula ran well through the pumps and we didn't run out of battery power) and all went well.

We made to the main area so we could see the parade.  It's kind of cool.  We like seeing the draft horses, and cows, and oxen and little cars and carts wind their way down the lane.  There were two HUGE oxen being herded by a boy who couldn't have been more than 12 years old!  The draft horses took up the whole pathway and acted perfectly.

There just happened to be a Mr. Sausage booth across from us so I had a sausage with peppers and onions and Aunt Chris had a hot dog.  Gene played the martyr and didn't get anything.

Then we were off to check out the animals.  All of the tents were crowded but for some reason the bunny tent was extra busy so we skipped for the time being although the boys were mad.







 We all loved the sheep.  There was one little guy who kept bleating indignantly and it was so funny!  Colin really liked that one.  Some of them were super friendly and we got to pet them and skritch their faces.  They were just like dogs :)



We hit the expo buildings and saw the Christmas trees (Colin, Aunt Chris and I loved them and they smelled so good!), all sorts of flowers, vegetables, and other exhibits.  Wish we could have spent more time looking but the boys got restless.  We enjoyed the sand sculpture.  This year's theme was The Wizard of Oz.

We doubled back and saw the bunnies.  So many cute little bunnies, and a couple of cute huge ones.

Gene suggested we get ice-cream from the Vermont barn and Aunt Chris and I concurred.  This is another tradition we have--each year we go and get local made ice-cream at the dairy barn.  I got Maple Walnut and it was delicious.

Then it was time to head over to the grand stand to get our seats for Daughtry and the Goo Goo Dolls.  It was crowded as we headed over but got in quickly and into the handicap section.  We love where we get to sit.  It's not super close to the stage but close enough and we have no one in front of us. It's a covered boxed area and people just sit/wheel in wherever they want.  I was surprised that there were a couple of groups already in there as I hadn't expected that there would be so many handicapped people seeing either band.  I know that sounds weird, but I mean, when we saw Elton John I knew there would be tons of people (old people, ha ha) but there never are many handicapped kids that come to see the shows in our experience.   One couple that was there let us move into a better spot while they moved over.  We take up a lot of room, which I feel badly about, but we try to be as efficient as we can with our space.  Colin has to sit kind of sideways in his chair because of the way he lays down and the way his head is.  So I usually sit behind him so we don't take up as much front row space. 


It was kind of boring to wait, especially since Nurse Julie wasn't there as she and Bill were catering two weddings.

But, finally, Daughtry came on.  Yay!  He came out fast and hard with lots of energy and the crowd loved him.  Gene was surprised that he liked him as much as he did.  He doesn't know much of his music, not like Casey and I do, and he ended up enjoying him.  We all really liked him and had a good time. 





 Near the end of Daughtry, I got a call from Nurse Julie and she said they were done with their weddings and they were on their way to the fair.  Whoot!  She and her friend, Kelly, came over and hung for a bit.  Casey was kind of grumpy and restless so they all decided to walk around.  Colin and I stayed and listened to the Goo Goo Dolls.  They were good and played good songs, but we're just not as into him as we are to Daughtry.  I was trying to figure the crowd out. There were definitely people that were obsessed with both bands-- you could kind of tell by the way each group was dressed,  ha ha, but everyone had a good time, for sure.









The crew came back from their walk in high spirits.  They had left the grand stand area and went to the Halverson's tent and had a beer :)  Casey thought it was the funniest thing in the world!

We were going to buy tee shirts but they were $30 each so we declined.  I'll try to find some on Amazon or Ebay because both boys really wanted one.  Yes, even Colin who doesn't give a care about cloths wanted a Daughtry shirt.  Note to self:  don't forget to try to dig up some shirts on line.

It looked like we were going to be later than we thought so I texted Deb.  She tried to call me but I couldn't hear a thing.  I called her as we were pulling out of the fair grounds.  We left right before the last song and got out of the grounds pretty easily.  If we had waited any longer we would have been in a snarly traffic mess forever. 

We beat Deb home.  Aunt Chris left.  Gene took Jaxon out.  We put the boys into bed as quickly as we could. Deb helped finish up getting Casey ready for bed.  I was up in bed and still hearing Casey at midnight but I think they both were asleep soon afterwards.



I'm adding some short video clips of the show in case anyone is interested. 









Thursday, August 21, 2014

SMA Awareness Day 21: Dentist for the boys

I try to make the boys' appointments so that they can go at the same time or one after the other.  Definitely like to do that with the dentist because we have to go to North Ave in Burlington, which is kind of out of the way--no good way to get there.  The only time we could get before school for the both of them was 9:00 AM!! 

So, we did it.  Good practice for getting the boys up early.  Of course we were still late getting out of the house...9:38 instead of 9:00 but we were only a couple of minutes late.

They took Casey right away, which was a good thing because there isn't a lot of room in the waiting area.  All looked well, well for Casey's norm.  He has no cavities, no tartar, no calcium build up, great gums, and awesome salivary production, ha ha.  Of course, he also has an open mouth posture, a very high and narrow palate, excessive gum tissue, crowding of his upper teeth, no sign of molars, and staining on his front teeth.  We could probably do some elective things like pull some teeth, expand his palate, remove some gum tissue.  But, much of it wouldn't do anything medically helpful for him and the problem would probably return after a while--meaning, if we removed some of his extra gum tissue, it would most likely grow back over time.   So we just monitor for any problems and check the health of the existing teeth and gums and he's good to go.  Dr. Bookwalter does polish his front teeth but it doesn't help much with the staining because it's not stained from food/drink; it's stained from the air and saliva drying on his teeth because of the way his mouth is.  We're okay with how he is. 

Casey actually likes the dentist and the joke and laugh a little. 

Colin was next.  He was happy and in a good mood but carried on some about his teeth hurting...Showed Dr. Bookwalter where his tooth had just come through--it's a canine tooth on his right side and the left has still to how it's head.  He's not lost any teeth since his last visit.  Still has two baby teeth to come out but they are not loose at all.  Colin's teeth and gums looked spiffy, too.  So glad we've taken the time to do a good job on mouth care twice a day since the boys were babies.  I'll bet there are many kids out there that are the boys ages that don't brush their teeth one time a day, let alone two!

Gene wanted to get back on his computer for work so we didn't make any pit stops on the way home, boo hoo.

Casey is still in his chair watching a movie with Colin who is back in his bed.  Me, I'm going to take a little nap since we have the boys tonight and tomorrow night.  Julia is coming later and we have to work on cleaning the wish room (the end where there beds are) because school is coming up VERY quickly and we'll have no time to do it because Colin will be in there all day for school starting Wednesday!