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Re: [IP] clarification

On  7 Feb 99 at 12:03, GTE/notebook wrote:

> I did not attempt to say that parents who are upset about there
> children's illness should not show it, I merely meant to say that
> children feel guilty at times for putting there parents through a very
> difficult and extremely painful event.

I've seen this too - where the children feel guilt for the stress their parents 
are going through.  As a parent of a child with a disability I hope that my son 
never feels guilty because of what we've had to go through.  It is similar to 
what I feel sometimes about what my wife and kids have to put up with in 
dealing with my DM - like last Thursday when my bg was crashing, I was in a 
very stressful situation (hospital registration for one of the boys) and my 
wife was trying to keep me from exploding because the people we were dealing 
with were not handling the process properly...  

> I did not attempt to say that the kids who grew weary of fighting CF and
> soon died committed suicide, I meant that what I have seen is children
> is that much of the time they do not struggle with all the matters of
> life and death when they are very ill, and some grow very tired and do
> not want to fight a disease like CF anymore and the ones I was blessed
> to know believed that there was another place after this life where the
> would be disease free.

Some people just stop fighting because they are worn out, physically and 
emotionally.  Many of us look forward to a time where there is no 
suffering, pain, disability or grief...  

> I can not attempt to answer a question like why some and not others, I
> have ask myself that question every time I passed a marker that I was
> suppose to be dead by, if I get an answer I will let you know.

Most of us on the list would have been dead a long time ago without the medical 
technology that we have access to. 

> I did not attempt to say that DM was not a horrible disease, only that
> at this present time treatment is more effective and life preserving.
> To clarify one other question presented to me, It would be my dream,
> hope etc that all people live disease free and I would give my life if
> it meant not another baby in this world was born with a genetic defect
> or a pre-disposition to a disease like DM or any other, I did not intend
> to say that because I had seen some children die young but accomplish
> much that it was all they were needed for.

There are many terrible diseases and conditions in the world.  For some there 
is reasonable effective treatment and a measure of hope, for others there is 
not.  I hope we all share the dream of a world where no one has to endure what 
we've been through!  Even with that dream, I have been amazed at the things 
that I have learned from children (and adults) that the world has labeled 
"defective" for some reason.  Every person has something to contribute, whether 
we recognize their contribution or not.  

There are a lot of paths that this thread could take, from the intrinsic value 
of life to the religious and theological dimension that is often ignored in 
treatment...  Last Friday I was at the Kosair's Children's Hospital in 
Louisville, Kentucky.  I walked down to the chapel from my son's room and sat 
for a few moments reading the prayer requests that had been placed on the table 
in the front of the room.  There was one unsigned request that struck my heart, 
and I sat there in tears for a while before I could go back to the room - it 
was in the handwriting of a child, probably between 7 and 10 years old.  It 
simply said "Lord, please help them find a cure and make me well."   Those 
words struck a chord in me because that's really my prayer too...  for myself, 
my son, my friends and really for each of us on the list...  

> Laura

Hang in there Laura and keep striving.  Reach for tomorrow - and remember that 
you have friends here who are reaching too and cheering you on...

Randall P. Winchester
* The views expressed here are mine and do not necessarily *
* reflect the official position of anyone in particular.            *
* There's no guarantee on anything said here...
* If I say I understand something completely the only thing
* we can both be assured of is that I must have completely
* misunderstood something. 
Insulin-Pumpers website http://www.insulin-pumpers.org/