Monday, June 12, 2017

The Real behind the Facebook Posts

Over on Facebook, I tend to post the fun, light bits happening throughout the week.  Never quite seems to be the place to share the hard stuff, unless I post a link to this blog.

This weekend, my Facebook posts felt inauthentic.  Because behind those photos of fun, Jeremy and I were tired and stressed.

Friday night post: Great concert with Great friends.
     Truth behind those photos, started Friday morning.  Jeremy and I were driving Brayden to DC for an appointment.  On the way, we got a phone call from the middle school.  Carter was sick and needed to go home.  I may have asked, "Well, how sick is he really?! Because we cannot come get him." Then there was scrabbling, trying to find someone to pick up Carter and drop him at home.
     We made it to Brayden's appointment, Carter made it home.  We meet with 10 different people going over Brayden's medical history for hours, in extraordinary detail.  Hard conversations. Then off to the lab for a massive amount of blood work (which means too many sticks for Brayden).  Absolutely exhausting.  I will go in to detail about this appointment in another post.
     We headed out of Children's, since it was a Friday afternoon in the summer, that means tourists everywhere (for the love people, please use the cross walks and follow the signs) and lots tourist and commuter traffic.  Finally made it home.  Checked on Carter, who was rocking a temp over 102 (oops, sorry I made him go to school but he did have a math exam).  Our Ms. Stephie arrived to take care of Brayden for the night and now Carter.  Jeremy and I changed clothes because lets be honest after being in the hospital all day, you feel slimy.  Headed out the door for more traffic.  Ended up being an hour late to meet our friends.  On the way, Jeremy and I thought this night out could be a really good idea or a really bad idea after the day we had.  Thankfully the time out was wonderful but, boy the next morning we felt rather old and tired.

Sunday post: Basketball Camp for Carter and Luke.
     The day started early with Jeremy and Luke heading in one direction to a basketball tournament.  Brayden and I were taking Carter to a basketball tournament in another direction, since Carter was feeling much better.  I continually underestimate how much effort and time it takes to get Brayden out the door. I go to scoop Brayden out of bed so we can leave...but Brayden has soaked his diaper, chux, clothes and bed.  Our on time departure was not happening.  And if you know Carter at all, then you know he likes things to be just so.  Being late is not something that goes over well with him.
     The car was also packed with Carter and Luke's bags and gear for basketball camp since we would not have time to go home. Being gone all day, means I had to pack everything for Brayden as well (feeding pump, oxygen tank, meds, emergency bag with all the "just-in-case" things).
    Carter's team won.  Jeremy and Luke arrived at Carter's game.  Carter was still in the tournament and now he was going to be late to camp (did I mention how much he loves being late).  Brayden and I, headed out with Luke to take him to camp.  In a span of just a few hours, we were in VA to West VA to MD for camp.  Brayden was not having it, fussing started and was not stopping.  We arrived to camp, Brayden not having that either.  I was trying to check in Luke.  Luke was so excited to find his friends that his listening skills were failing.  Trying to get him to check himself in because there was not much space to maneuver Brayden's wheelchair around.  Asking Luke about getting his room key, he had no idea.  Asking Luke about paperwork needed or dorm location or other check-in items, he had no idea.  And Brayden is fussing the entire times so I could not concentrate well either.
     The campus for basketball camp has beautiful old stone buildings, which means accessibility can be questionable.  We spent about 30 minutes, going in and out of buildings, trying to find the elevator because we got many different "helpful" directions for others.  Finally made it to Luke's room (after being in 3 wrong locations)...over 90 degrees outside and Brayden still fussing.
     Carter being late to camp, I checked him in and thought it was a good idea to get his room set up so he could just head to the gym when he arrived.  Brayden did not like this idea.  But by the time Brayden and I made it back in the car, Brayden actually like the idea of being in the car and away from the basketball camp chaos.  Carter finally arrived with Jeremy, we handed him the camp stuff and he was on his way. 
     Brayden and I followed Jeremy's truck home.  Brayden was letting it be known, that he was not pleased with his Sunday.  And the only way we know how to calm him in the car, is it roll the windows down and blast music.  Over 90 degress outside (and I already started the day off sweaty from loading all the camp gear and Brayden) with the windows down, one hot steamy car ride home.
     We made it home, Brayden in his bed and he wanted nothing to do with me.

And the bonus for the day, our dog "found" a ground hog and left for our delight in the back yard when we arrived home.

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