Monday, June 24, 2013

Some of my favorite quotes

“The child must know that he is a miracle, that since the beginning of the world there hasn't been, and until the end of the world there will not be, another child like him.” Pablo Casals

"While we try to teach our children about life,
our children teach us what life is all about."
~~Angela Schwindth~~
Pablo Picasso:
“Each second we live is a new and unique moment of the universe, a moment that will never be again.  And what do we teach our children? We teach them that two and two make four, and that Paris is the  capital of France. When will we also teach them what they are? We should say to each of them: Do you know what you are? You are a marvel. You are unique. In all the years that have passed, there has never been another child like you. Your legs, your arms, your clever fingers, the way you move. You may become a Shakespeare, a Michelangelo, a Beethoven. You have the capacity for anything. Yes, you are a marvel. And when you grow up, can you then harm another who is, like you, a marvel? You must work, we must all work, to make the world worthy of its children.”

A Friday that felt like a Saturday

SNOW day for the boys today!  The boys got to sleep in.  They don't care about the snow but they do like the sleeping in part.  We didn't get the call until 5:45 AM but I had pretty much made up my mind that I'd keep Casey home anyway.

Nancy L and Julie made it here fine.  I kept asking Nancy if she wanted to leave early (since she lives pretty far away) but she said she was fine since it was just snow and it wasn't blowing and it stays a lot lighter longer now than in say, December.

So I did a lot of the little things that I never get done around here while Nancy and Julie entertained and took care of the boys.  And, I did all

Gene worked most of the day.

The boys and I caught up on Idol.  

I finally got him to make my soup; kale, white beans and spicy chicken sausage.  It turned out pretty good. 

11 Days

It's been 11 days of sickness here.  BUT, I am declaring, today, that the boys did NOT get it.  Gene and I were the sick ones.

This was a bad one.  Gene and I were terrified that the boys would get what we had.  Somehow they stayed well.  I attribute this to how their immune system has been built up through the years and the Sambucus Immune Syrup that I've been giving them daily this cold/flu season. I truly think that the balance between keeping them home in a bubble and going out in the world among the germy people has worked in building up the boys' resistance to catching sickness.  Still, it's always a crap shoot because, honestly, a mere cold could cause the boys severe respiratory distress despite their immune system and our cautiousness. 

Gene started with something on the 16th.  He took to his bed (I ended up in the aunt room since he contaminated our room).  We didn't see him for about 4 days.  He had to help a little bit but mostly stayed away.

I got it towards the end of his fourth day so he was able to help out more then.  Thank goodness!  Lots of sinus stuff, aches, ugh.

So happy the boys stayed healthy!  Really is a miracle.

Humanities Camp with Colin

Here we are.  In the non-air conditioned library.  Poop.  Hopefully, we won't melt.  So far he's doing okay.  It's hard for him to keep up using his DynaVox, but Courtney is here helping Kristie brainstorm and work things out.  I helped Colin pick Prince's "Batman" theme for a song that describes him.  The lyrics aren't too inappropriate :)

We've listened to folk, blues and now jazz, and are discussing the differences in feelings they evoke, instruments, lyrics, themes, etc.

Gene dropped us off so Julie and Casey could take the van and go to the library and then pick us up at 2:00.

Friday, June 21, 2013

Disappointing day (but it was beautiful weather!!)

The engineer from UVM was supposed to come today to meet the boys and check out their switch access and see if he may have some ideas on making things easier and more accessible for the boys.  Claire (OT from school who initiated all this) called me early this morning to let me know that he had to cancel for today.  Bummer!  He's working on some big project and needed the time to do it.  We'll look at scheduling again for a couple of weeks out.  BUT, she didn't call me too early because I already had my special brownies made!  So the nurses, Aunt Chris and I got to enjoy them instead of having to share them with the UVM engineer and school people :)  They were most excellent.  Very fudgy with chocolate chips inside and chocolate frosting.

Then we got the boys ready for their first neighborhood walk this summer.  Nancy decided to take Casey's manual chair instead of his power chair (she isn't the most confident of manueverers) and Casey isn't ready to drive on Route 7 (they only have to go a little way on the main road).  But, I'd like to be there the first time he uses his power chair for a walk like that.  Anyway, he didn't mind.  I wiped it all down and put the fresh covers on the seat so it was all fresh.  After being in Julie's car for a week it had pollen all over it!  The boys hit a garage sale but didn't want anything.  I'm pretty surprised but sometimes they're like that, ha ha.

I had the house to myself for 55 minutes!!!  The phone didn't ring (I should have thought to silence it) and the animals were quiet so I had some real quiet time.  I heated up some leftovers from dinner--yummy grilled chicken breasts and some spinach sauteed with bacon and walnuts and a big glass of water.  I sat for the whole meal!!  Watched my judge show and enjoyed the quiet and wondered how the boys were doing ;-)

Boys and their Nana's (two Nancys) did their own thing when they got back.  They were a little warm but it's not humid at all.  Beautiful, tiniest bit of a breeze, blue skies, about 83 degrees.  Ahhh!

My other disappointment came when I learned that Casey's vent did not arrive at the Apria branch.  I was pissed!!  It was supposedly ordered on Tuesday.  Thought it would be in on Thursday.  No such luck for Thursday.  Called today.  NOPE!  No one had tracked it or looked into why it hadn't come.  I was livid!  I tried not to take it out on the RT but where was the branch manager???  ON VACATION!!  Ridiculous!   I am very thankful that we weren't planning on going out of town this weekend.  Long story but RT called back and they have a vent that was going back on the shelf and the RT on call will grab it and bring it if needed.  I guess we'll have to bag him or I could try to set up one of Colin's for him...I'm kind of worried because this vent has the same tag on it saying it needs to be checked in June of 2013 which is what the one that gave the "vent inoperable" reading on Tuesday.

Brought Jaxon out for two Frisbees plays today.  One time he went down by the pond and dropped the Frisbee and started toward the street.  Not a good thing. But I held up the other Frisbee and called to him and he came back, thank goodness!

Watered the front (and only) garden this evening.  I went out with my rain jacket on (first jacket handy) so I wouldn't get eaten up by the mosquitoes.  This way I only had to swat away by my face.  I hate that they are so rampant this year.  They're even out during the day hours.