Sunday, December 3, 2017

Guess what Gene and I finally did??!!

Gene has always lifted Casey in and out of his chair and in and out of bed.  The nurses and I will try to time it for when Gene is here and available, or we will use the Hoyer lift.  The nurses and I are pretty good at it.  Each nurse and I have a routine of who does what.  There's a lot of fiddling around of equipment--like moving the cough machine, Tobii stand, IPV machine, or whatever happens to be in the area. It takes a certain finesse which takes a bit of time to acquire and sometimes we have it and it's a smooth run and sometimes it's a flub.  Casey has never been hurt but I'm sure sometimes we look like the Keystone Cops or the Three Stooges, hahaha.

Gene had always hated the lift.  He thought it was a pain and took too much time, blah, blah, blah.  We have always encouraged him to use it but he was stubborn.  Finally, he gave in.  His back and other parts have been bugging him lately so he's been having the nurse and I do the lift.  (It can be done with one person but is pretty tricky so it's way better to have two people).  Well, Thursday we had no nurse but Paula was coming to the house to do some school for a couple of hours and Casey needed to be in his chair so....we did it!  And we did it pretty smoothly.

We've done it a couple of times ourselves since and we're getting into our groove.  Pretty proud :)

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. 

Tuesday, November 21, 2017

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

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 :)