Friday, July 4


On July 4th I thought about the word independence and how the meaning is so much more personal this year.  The actual meaning of the word as sourced on is – Freedom from the control, influence, support, aid, or the like, of others.  When I read that I realized how much I take my independence for granted and how Jackie’s independence was so senselessly taken away from him.  Life has a way of taking us down those paths that we never thought we would travel. What has helped to pave the way is the support we have received from all of you, and that very word in the definition is one that will actually help Jackie make it.

Jackie slept in a little this morning since his therapy schedule was rearranged due to the holiday.  Paula, OT, came by at 8am to work on ADLs  or activities of daily living.  She worked with Jackie on everything from sitting up in bed to getting dressed.  She makes Jackie do as much as he possibly can.  When she asked him if he was glad she came in this morning he said no.  She actually wants to hear truthful answers. When she asked him why not, he said because it is work.  We explained that even though it is hard, it will eventually make him strong and independent.

After Paula finished her session we decided to take Jackie down to the cafe for breakfast.  Chef Ken made him fresh pancakes and came out to say hi.  We then went up to the room for a late round of morning meds and then it was time for speech.  Becca was off so we had a different therapist working with Jackie.  Based on both of our schedules he had a half session with her.  She took him to her office and they used two different apps to help with Jackie’s speech.  The one app is free and called Talking Tom 2. It is meant to help someone talk louder.  A tomcat listens to hear the voice and then will repeat what you say.  Jim and I downloaded the app as soon as she told us about it and all three of us had a blast playing with it.  The cat purrs when you pet it and has some other fun features with a dog.  Of course we worked with Jackie, but the majority of the time we were just playing around.  All of us were laughing so hard we were crying.  It felt awesome!  PTL

At this point Jackie was exhausted but we decided to push through and have him eat his lunch first then take a cat nap.  That ended up working out and by 2pm we woke him up for PT.  Erin was also off today so we had one of the other therapists cover.  She had a very positive demeanor and Jackie worked hard during her session.  They did stretching exercises, they practiced standing, and they also worked on sitting balance while hitting  a balloon back and forth.   When the session was over, Paula took over for another 30 minutes.  This made up for the time that Jackie missed during speech.

Paula focused on stretching the left side, standing and sitting.  She also helped me practice transfers with Jackie so I can also be approved to do them like Jim.  Jackie was exhausted again.  We headed back to his room and got him in bed for a nap.  He woke up more refreshed for dinner.  He ate well and then we all decided to get some fresh air on the second floor terrace.  We sat near the rail and watched many people passing by heading just a few blocks away to the free concert in center city.  There will be many noises outside Jackie’s window tonight celebrating the holiday.

We all know the true meaning of Independence Day, but Jackie is still waiting to celebrate his personal day of independence.  Like his forefathers, battles will need to be fought and won.  Strength, perseverance, patience and faith will pave Jackie’s way to victory; and you can count on a huge celebration when he gets there!  PTL