Thursday, June 7, 2018

Life Lately

Anna's class was scheduled to spend a day this week at the Special Olympics supporting two classmates.  When I received notification regarding the outing, I had two immediate concerns.  Due to the nature of the trip, there would not be any chaperones.  I always attend field trips in order to take care of Anna's nursing needs.  I spoke to the school nurses to find out if they would be in attendance.  Yes, they would.  They made some phone calls and confirmed that they would be able to use the nurse's office inside the school where the event was being held.

So while that concern was eliminated, there was the weather issue.  The kids would be outside all day and were told to wear sunscreen, hats and bring plenty of water.  Anna's medication causes her to quickly overheat.  One of the nurses was going to be stationed inside a tent and told me that if Anna needed shade, she could hang out there.  But would Anna say she needed shade?  I'm seeing that shift into caring what other kids think.  For example, on a recent field trip, we had to climb three flights of stairs in addition to a significant amount of walking.  The second time we hit the stairs, I quietly asked Anna if she would prefer to take the elevator.  Nope.  She later told me that using the elevator would have been embarrassing.

Anna and I discussed the Special Olympics outing and, at first, she "kind of" wanted to attend.  As I hashed out the details, it became obvious that the logistics were stressing her out and I told her she could simply stay home that day.  Her teacher had absolutely no issues with her staying home either.  Earlier, I had commented to one of the nurses that it would be a bit ironic if a kid with special needs couldn't attend the Special Olympics as a spectator because of her needs.  (I have to add here that the school was extremely helpful in trying to accommodate her needs.)  Well, it was postponed due to rain and the class won't be able to go on the rescheduled date because of activities at school that day.

I try to remain positive when it comes to spina bifida and hydrocephalus because this is our life.  It won't make things easier to complain and be negative.  After everything we went through with Abigail and then the girls' surprise, high risk for many different reasons pregnancy, I want to be grateful for what we have.  That being said, I'd be lying if I didn't admit to challenging days and moments, or times when I question why this had to happen to us.  

Some days are simply crappy.

The girls still have a couple of weeks of school left.  Thank you, snow days.  All the end of year stuff is really hitting now, even more so this year because the girls will be heading to middle school next year.  Crazy, I know.


Last weekend was supposed to be cold and rainy so we had planned to paint down at the cottage on Saturday.  The rain and cold was pushed to Monday so we ended up having a nice day, even being close to the water.  It's never as hot down there as it is at home.  Painting the rooms that had never seen paint is not an easy process because the walls are made up of some type of particle board which just absorbs the primer and paint.  We've been focusing on the family room and the bedroom that had wallpaper.  There's trim around the top of both rooms.  Thankfully, most of the trim in the family had been painted that off-white color, so I just need to paint it white.  The trim in the bedroom needed three coats of paint and that's after the primer.  Although, I told Rich it could have used another coat of primer which probably would have saved me a coat of paint.


That paint color is sea glass but we've found it changes color depending on the light.  Here is looks like a pale blue.

Looking like a tourist.

1 comment:

Anonymous said...

My son has spina bifida. He is on ditropan, which causes the symptoms you speak of. We have faced issues where he wants to be socially acceptable, as opposed to doing what I feel is in his best interests. His only mobility needs are afo’s, for leg stability. I have learned that I cannot always be by his side. At some point he will have to manage his health entirely on his own, so I choose to follow his lead in small area such as this. This makes the larger issues, drinking, cathing, etc., far easier to handle as he has some control over his life.