quiet...

It has been a very quiet day today...the phone has hardly rung (which is a blessing and a terror)..
I don't have to answer questions...(the blessing) and I don't have to answer questions (the terror) Now why is that????
I know that doesn't make much sense...but it does to me...sometimes answering the question "How are you doing?". Is a difficult one to answer...because most of the time...I don't know how I am doing! Which sort of makes me laugh as I type that!!(so what else is new...did you ever know how you were doing?!?! LOL) And then, when the phone doesn't ring...I wonder if perhaps my words are too much for people to hear...and yet I have to get them out...Oh what a circle!! So today, is a quiet day...Michael has been sleeping most of the day which means comes Monday when they do his blood work they will tell us once again that a blood transfusion is necessary...which tells me that things are not really any better...Hard to hold on to hope when that seems to be what happens...As the days drift into weeks I watch....I see the difference in his mood..in his temperament...in his body...His skin is starting to hang on his bones as his muscles break down...He has a difficult time walking and side steps a lot to keep his balance...And now there is a smell about him....I am not sure what that smell is or how to describe it to myself...but as I look into those green eyes I see something that was not there before...I see a murky film...a lack of sparkle...a vacant look...
And with this quiet day...I have a sense of fear...I know that I am not the only person who has ever gone through something like this...I know that I am not the only person going through this at this very moment...but today, in the quiet...I feel very much alone.

3 comments:

Pat Dalke said...

Patti:

Just now I looked at your blogs, thanks to my daughter-in-law forwarding them to me. I enjoyed looking at your mandalas and the words you wrote to accompany each of them. They are bright and beautiful little gems.

You inspired me to pick up my colored pencils and try to finish this funny little piece I've been playing with on 8 1/2 X11 paper. My 6 year old granddaughter got me started a few weeks ago when she came home from school and wanted to teach me what she had learned in art class that day. Blessings to you both and Lisa too for spurring me on.

My home has always been in Chicago, yes we live right in the heart of the city, but, I have been in Atlanta for long stretches of time since December of 2005 when our son was first diagnoised.

I stayed up on Tuesday night to watch the party for Barack Obama in Grant Park on the lake front in Chicago and I felt, at that moment very alone. I shed tears of joy for this historic moment and for my beautiful city and all its folks that I miss so much.

But as I've told Dan there is no other place I would want to be at this time. It is a privelege to accompany him on this arduous path.

You and your husband are in my thoughts and prayers.

Barb said...

Patti, I couldn't help but cry when I read your post today. It just happened that I was listening to Vince Gill singing "Breath of Heaven" (by Amy Grant), a beautiful Christmas song. It is very soothing, and more of a prayer. The words are here

Hugs...

Brenda said...

.........love you.........
bb