Hating the way it is

Saturday afternoon I took my two CPT 2-ers to the pool.  They love to swim.  They've gotten so they're like little fishes in the water and that is a beautiful sight to behold.  Michael especially, who was so afraid of getting his head wet, is now doing cannonballs and pencil dives and somersaults forward and backward.  He taught himself all of this.  Why, I'm not sure.  Perhaps he just decided to conquer his fear.  He needed no prompting from me, he just decided to jump in and hasn't looked back.

When I bring the kids to the pool I make sure they've got several snacks and pull them out every twenty minutes or so to have the snack.  Then they can get back in the water for more fun.  The pool wears them out fast.  For any other kid, that would be great for their parents.  Wear them out, then they'll go home and nap.  For these kids, not so much.

Saturday started off like a regular trip to the pool.  We were there a total of about an hour.  They had brought three snacks apiece and were having a great time.  I pulled them out for their first snack and then they both went back in.  About ten minutes later, Michael came to me hobbling saying his legs hurt and he really needed the bathroom.  I helped him get in there and he couldn't get up from the toilet.  He was in too much pain.  I went and got his things and had his sister get out of the pool.  She was ok.  Michael could barely stand up without assistance so I got him dried off and dressed and carried him to the car.  The whole time I was walking out there he was so upset.  He kept saying "I hate CP 2!!"  He was upset he was in pain, he was upset he had to get out of the pool and be carried and he was upset his sister didn't have the same pain he had.  I don't want either one of them to be in pain but I understand where he's coming from.  I hate it too.

I asked him again about participating in the research study through OSHU in Portland, Oregon.  He said he'd do it.  If it makes it so he might not have this pain anymore, he is willing to try.  Now just to schedule the time and get out there.  It won't be for a while, yet as the research team is going to try to schedule around the kids' school vacations.  I am hopeful this will provide us with answers and that his future will be better, as well as his sister's.  They both deserve nothing but the best, that's for sure.