Tuesday, June 30, 2009


Boy, it's so easy to go over to the other side....
thinking of the things that Paul can no longer do.
I try like hell to stop myself...fast.
It is so important to focus on the things he can do...and things that he
couldn't do but can do now.
Even the little things...such as swallowing.
When you can't swallow....you sure as hell don't look at it as a little thing.
He is now a grand swallower.
Every once in awhile when he is exhausted he may have one tiny drool. Like the drool I let loose in college as I concentrated so hard to play my first piano piece,
Twinkle, Twinkle Little Star.
My friend Sue sat at the piano in front of me playing Bach...she turned to say something to me..........and bingo a drool.
Paul & I still have a laugh over that one!

Paul can walk....not a real march...yet....but assisted he can make it into rehab, Dr's offices and most importantly Gourmet Cafe and Montville Inn.

Food is important....having a meal with friends is really important. Paul scores an A+ in the eating department.

The kids are coming in a few weeks so I suggested to Paul that we should take them to the shore...he howled as if to say "right...and I'm gonna crawl through the sand". I laughed with him then explained that we'd love the drive and we could go to the beach and sit on the wooden walkway or take a drive while the kids enjoyed the sand.

I just can't begin to imagine how it must feel to be in his situation. I'm sure he has hope...hope that he will improve. Improve enough to have a chance for one more walk on the beach...one more time to pick up driftwood...seashells....a favorite rock....stand at the edge of the earth and feel that might pull of water.

We also play this odd morbid game....we think of someone that we know that is in a worse situation. Then we can stop feeling as if we have it so bad. We know a young man that can't eat by himself or walk....but he can talk and read. I asked Paul if he'd rather give up walking to be able to talk and read. He thought for a moment and shook his head. I'm sure that part of him knows he can handle his own situation...but he's not sure how he'd handle a different situation.

Last week when we went to the Kessler West Orange to see Dr. Barrett we saw so many people with incredible challenges....wow that is the place to go if you are feeling sorry for yourself.

A good friend also pointed out something very interesting. He said that when he was a kid his Mom had a living will...."if 'this' happens or 'that', I don't want to survive...blah...blah...blah..." Well, 'this and that' did happen and guess what...she didn't want to give up. She realized that other things about life were pretty damn good...she wasn't ready to let go.
I remember Paul and I having a similar discussion...eyesight and reading were involved in the 'not wanting to live' category. Guess what......Paul definitely isn't ready to call it quits. I'm sure it's different for everyone...............
I'm also trying to have him look ahead....plan trips. We have some time paid for in Mendocino. It's not impossible...just not yet.....

It's late at night...time for me to turn in....this is the time I am most vulnerable....night thoughts.
I think of all the wonderful things we've done...how game Paul was to go anywhere...anytime.
I just don't want him to be sad....I just want him to be happy.
I just want to make some more really happy memories!!

Love to all...........sleep tight!

1 comment:

Anonymous said...

Three cheers for swallowing and for all the little accomplishments.

I can relate to the Twinkle Twinkle Little Star story as I was in the same boat. That horrible memory is etched in my mind but I had to do it to pass the course for Elementary Education. Did I ever play the piano after that? You know that answer!

Big hugs to you, my dear.

Love, Judi