Tuesday, June 28, 2011

Reflections on rehab

So many random thoughts go through my head every day through this experience, and I think, "I want to jot these down." But they don't gel together into this nice narrative, or if I want them to gel nicely, it would take me awhile to sort out the thoughts and organize them somehow first.  And that kind of time and mental energy is in short supply, so I decided to just toss them out into the blogosphere as is, so they're captured for posterity and in the off-chance that I someday do get to collect them.  So here goes:

-I'm turning into one of those people who have to pocket bread and butter from the restaurants they go to.  Anytime I spot salt and pepper, I grab it and put it into one of the drawers in the hospital room, next to the packets of sugar, ketchup and ranch dressing and piles of spare plastic silverware.  I am also hording paper cups, plates and napkins.  Eventually I'll totally recreate my kitchen pantry.  These are the things you do when you are not in control of your environment, I guess.
-Every evening after dinner, they plan some kind of recreational activity or entertainment for the kids.  The second night we were here, they had a Candyland party complete with a recreated game on the floor of this large room and two life-sized gingerbread pieces sitting in wheelchairs to be moved around the board.  Last night they brought a guy in who taught the kids some African drumming.  Each time I go to these events, I vascilate between smiling to myself because I think it's such a great thing they're doing, to choking back the huge lump in my throat because even though it's great, it's also incredibly sad to me to see these kids, kids with trachs and g-tubes, huge scars on their heads with patches of hair growing back, wheelchairs all lined up and everyone trying to create some semblance of "normalcy"-whatever that means-in this otherwise totally sterile environment.
-The lack of fresh air and exercise is getting to me.  We try hard to get out for fresh air as much as we can, but Hannah's schedule is pretty intense and she also doesn't fare well in the humid heat of a NJ summer.  When we do get out, it's often in the evening and there aren't a whole lot of desirable/safe places to walk around in the evening in this neck of the woods.
-This is a place where people come to get fixed up.  The hospital is the place where you are sick, and here is where you come to get well/strong/"better." Because of that, and because it's a kids' rehab center, it's a very lively, active, busy place.  Much better energy than at the hospital in NY.
-We planned for Hannah to be here, which is a very different state of mind for me to be in than the mom of the 17 year old who just got out of a week long coma after being hit by a car/hit-and-run while waiting to get ice cream at the Jersey shore on day 1 of his summer vacation.  For us, we are hoping Hannah will be in a better way when we leave than she was before the surgery.  For many others, this is the first stage in their acceptance of a whole new way of life and a new body.
-I'm getting tired of nursing assistants coming into Hannah's room at 7am to ask if she peed or pooped yet, and to get her up for the day even though we've expressed many times that we will be responsible for making sure she's up, and to please not disturb her in the morning so she can sleep.
-Every meal the staff asks what Hannah ate.  But sometimes a staff member will just take the printed out slip on her tray that shows what we ordered, and not even ask what she actually ate.  Hmm...
-I have a new appreciation for the Orthodox Jewish community.  There is a Hasidic boy on Hannah's floor who has the most amazing support network around him every day.  Last night at the drumming demonstration, two of the men in his community came in wearing funny hats and big red clown noses which all the kids got a kick out of.  They sing and dance and laugh with him and bring him lots of food.  He is very loved.
-It's sad to see the kids here that don't seem to have family visiting them.  I don't know their stories but I'm sure they aren't happy ones.  The nurses here are their surrogate mothers.  Amazing that these kids still smile, laugh and play.
-I miss Vermont.  I am so appreciative of being here for the opportunities it's affording Hannah, but I am also so aware of how important a sense of place is to me and my well-being.  I really do wilt when my surroundings lack easy access to nature.  I also miss my community and the values many of us share for the simple, local, unplugged life.
-I'm writing this in the dark while Hannah sleeps.  Finally she is getting some good solid zzzsss every day, which was lacking before we switched rooms. So while Hannah sleeps, I type...

2 comments:

islandlin said...

While Hannah contnues to improve & gets more sleep, take time to treat yourself to a hearty morning "constitutional". Even tough mamas need a break.
xoxo

Kim PT said...

Your observations,emotional response to all you are seeing and experiencing touches my heart in a very special way...take care of yourself.