You're not alone, Betty. I was naive too in our "Before Time". When the boys were diagnosed and everything in our lives started to crumble, friends and family with whom we had been very close suddenly stopped calling or returning our calls. I didn't see this coming. After all, we had been there for others so assumed they would be there for us. In our sleep-deprived, shell-shocked, grief-ridden state it took us a while to catch on, so we actually called people to beg for some help - minimal response... 

Even my mother, who is the boys' only surviving grandparent, when she came to help (lives on the East Coast) really only helped with Robert (NDA). She somewhat accepted Anthony later on but only ever held Joseph a few times - and then mostly just to have pictures taken. She didn't even come to Joey's funeral. We rarely speak now and she is no longer welcome in our home.

When the fog cleared somewhat we found that the best help came from people who were actually acquaintances or even strangers before. It is quite amazing though. The friends that populate our lives now are ALWAYS there for us. There are a few from the "Before Time" but most are not. But you know what? Those who were there for us in the disability days have stayed with us through the loss of Joey. I expected another mass exodus of people again and it didn't happen. If anything the friendship bonds were strengthened. Mark and I are truly blessed in so many ways.

Didn't mean to ramble on...

I wish your Mom peace and comfort. My thoughts and prayers are with you both during this difficult time. I know Ann must be a special lady to have raised such a wonderful and 
compassionate woman, Betty. Thank you again for your support and encouragement.

Yvonne

Mommy to 3 year-old triplets: 
Robert (NDA), Anthony (mod. spastic quad CP)
and our angel, Joseph {April 14 /97 - Dec. 31/ 98}
(cerebral atrophy, sev. CP, CVI, Infantile spasms, spina bifida, BPD...)

>>> [log in to unmask] 05/26/00 02:01AM >>>
In a message dated 05/25/2000 11:53:24 PM Eastern Daylight Time,
[log in to unmask] writes:

<< Perhaps your Mom will move through her fear in her own way and time.

She will, I think.  My Mom is a strong woman.

 The response of  family, friends, colleagues, and community during severe
 illness and approaching death sharpens the coda comprising human behavior
 and mystery.

Indeed.  I spend days pondering these things.

 Betty?  Just what were and are your expectations?
  >>

Steve, before my disability I operated under the naive assumption that most
people loved one another the way I love others myself.  I grew up near a
cousin, Panny Clark, who had a debilitating MS progression starting in her
early 20s.  She lived in a nursing home not far from us -- just a couple of
miles.

My parents didn't wait for holidays or special occasions to drop by for
exactly three minutes for the "obligatory visit to the family gimp."  They
visited with her because they loved her and they enjoyed a mutually
beneficial family relationship.

When I was older and could drive myself, I would drop in for visits on my
own.  Panny and I would just hang our.  Sometimes we included other people
who lived there; sometimes we just shared our own company.  She was a dynamic
woman and I loved her very much.  I grew up with the idea that relationships
continue, disabilities notwithstanding.  This notion was imprinted on my
heart.  Panny is still part of my heart, even though she has been gone for a
number of years.

She mentored me, she loved me, and she acted in a sisterly way, especially
after my own sister died.  She was about twenty years my senior, so there was
parenting as well.  It never occurred to me that other people didn't visit
her, except for my parents and her parents.  She never spoke of these things
and I didn't realize this until the past couple of years.  I think of her a
lot now.

I just didn't know better Steve.  Losing my friends was the shock of my life
-- the shock of my life.  How naive I was!  I didn't know that people did
this.

Of course, that shock is tempered now.  I have come to realize that I can
love these people in spite of their ignorance.  They really don't know what
they've done.  I have altered my expectations dramatically as a result of
this first experience in my disability life.  I have a difficult time
trusting anyone.  That may not be uncommon, even in nondisabled circles, but
my first assumption when I meet people now is that I should not get close.  I
am extremely guarded.

With regard to my Mother, I expect that she will not be shattered as I was.
She has been through the divorce of her first husband, and the subsequent
loss of the friends that they knew.  I've been through that myself.  She lost
her first-born daughter, my sister, through suicide.  That is the most
horrible and most agonizing thing that can ever happen to a parent.  Losing
friends over cancer will not compare in her mind.  She has already suffered
the loss of losses, and she has never been the same.

I just hate to see that her friends have not been more attentive.  She has
nearly broken her back over the years on behalf of her DAR chapter.  Everyone
in that chapter knows her well -- everyone.  I honestly thought that at least
some of them would have responded to her illness with good conscience.

In short, I can be terribly naive about these things.  I am learning though.


Betty