DAY 119 OH MY GOD, its almost here!!!

I CANNOT BELIEVE IT IS ONE WEEK FROM THIS SUNDAY!!!!  No more thinking, "oh, I've got plenty of time"!  Or, "I'll tackle that in June"....  Its FREAKIN here...almost.

On top of everything else, my neighborhood pool is closed for 10 days for maintenance!!!  Do they not understand I have to swim a quarter mile in 10 days???

As usual, when I am at my peak spasticness, Patrick grounds me...of course not intentionally by being reassuring or anything absurd as that, but by his very existence.  Today we went to Next Steps out in Western Springs where he does the Lokomat and walks.  Then they do mat exercises.  They place Patrick on his side, with his head an shoulders over the edge of the mat.  His arm is placed on this vibrating device which maximizes the nerve and muscle activity.  His shoulder is supported by his trainer and Patrick, INDEPENDENTLY, holds his head up and turns his head.  I was so pissed I did not have my phone to video this today because its very hard to describe.  Once you see it, you will understand why its so amazing and such a huge step for him.  But back to the inspiring part.  When Pat is doing this, his whole mind and body are so focused.  The effort to hold up his head creates nerve stimulation throughout his body, so even his feet are shaking.  Have you ever exercised so hard, particularly if you have to hold a position for any length of time,  your muscles start shaking uncontrollably?  This is what happens to his whole body.  That's how hard he works.

Connor Dwyer, the recent gold medal swimmer from the Chicago area, is a friend of Patrick's.  He was interviewed on TV this morning and said he is in the pool for 2 plus hours every morning to start his day.  I was already overwhelmed at that, since my 32 laps are killing me.  Then, while watching Patrick, I was thinking how his workout for 2 hours in physical therapy is exactly as much of a work out as 2 hours of swimming is for Connor.  Total focus.

The point being I shut up.  As if Patrick playing the quadriplegic card isn't enough to humble me, the folks that work with him are amazing.  A quick shout out to Josh.  Josh is a young kid (somewhere from 17-22 is my guess) who's dad had a horrible experience with rehab at Rehab Institute of Chicago (don't get me started).  As Josh said, "they just teach you how to live like this...not how to get better".  His dad eventually went to Next Steps and had a much better experience.  Josh attended his Dad's PT sessions with him, helping out with his dad.  After his dad graduated, the staff asked Josh to stick around because he was such a great help.  This kid is amazing.  So mature, so compassionate.  He helps out a lot with Patrick and does such a great job.  Again, humbling.  His trainer Thomas, also so knowledgeable, so compassionate.  Also a young guy.  These are people that could be training for big money, yet they choose to work with people whose progress is often minuscule.  I'm not sure I would have the patience or commitment.  Ok...just wanted to put that out there.

Jeez, sorry this blog is so serious!  Just one more thing.  When I started this I said the journey was more important than the race itself.  One of Patrick's friends, Ed Reardon, warned me about this.  He said, "You may not be able to finish.  If you don't, is this still worth it to you".  I said yes and I still mean that.  Having said that, I will be very disappointed if something happens and I don't finish (I will not EVEN entertain the thought), but even now it has been worth it.  Today Patrick was on the Lokomat and needed suctioning.  The Lokomat is elevated, not even with the floor.  I had to jump up onto a high (for me) step and then straddle the treadmill to suction him.  And I did it without even thinking AND without killing myself.  That is huge!!!  If you've never been overweight or out of shape, its probably hard to appreciate what that feels like.  It feels like freedom.

When I first started working with Patrick a year ago, it was very hard for me to work an 8hr shift.  Its a physically demanding job, but particularly hard for me.  I also work part time as a hospice nurse at an inpatient unit.  I work 12 hour night shifts there.  When I first started there over a year ago, I would pull into my driveway at 8am and I literally sit there because it hurt so much to get out of my car.  There are two steps to my front door and it took everything I had to walk up two steps.  Once I was inside, I had to walk up a flight of stairs to get to my bedroom and go to bed.  If I did not have a railing going up the stairs, I don't think I could have done it.  I literally pulled myself up the stairs.  I read this now and I wince a little bit.  Perhaps too much information.  I committed to being honest about this process, knowing there are some of you that may be horrified, saddened, surprised, even a little disgusted.  At the time, I really didn't think about it much.  It was my life and I didn't dwell on the negatives.  The negatives, however, were killing me.

Now, I work 12 hrs and come home tired but not in any pain.  The stairs are no big deal.  Same after 8 hrs with Pat.  Tired, but not dreading having to get up to bed.  Things still ache and jumping up and down with him sometimes throws my body in goofy positions and I feel it.  But overall, its a whole new experience.  I hope when you read this you are not horrified or saddened.  If you are disgusted, you've got issues bigger than mine.  I want you to feel the joy with me.

The joy of freedom.

HUGE THANK YOU to everyone who has donated!!!!!  Please pass this along.  By giving, you are actively participating in Patrick's journey to freedom.  Its a very sweet and amazing journey that you are joining!!!