[tri-med] Re: Emmanuel's Foundation - A Cornerstone Support Community

Yes, Cornerstone Support is a faith based community that supports families
wanting to move forward with life, regardless of the diagnosis their child
has received.  We respect life and we respect dignity of death for those who
choose no extra-ordinary measures.  There are many other places available
for families who believe otherwise.  

Cornerstone Community will be a beginning place for people to start getting
help in their journey.  The first step if for them to want help.  Perhaps
it's a bedside visit at the hospital after delivery (or earlier), perhaps
its help with medical research on a particularly difficult diagnosis to
understand.  Perhaps it's just a person to help the parents stay strong and
stand up for their beliefs in front of the physicians. .Perhaps its more,
perhaps its less.  

Cornerstone Community, the name for our Telephone & Online Support Forum,
will be a 24/7 resource for parents who need immediate help and provide
friendly companionship and also provide research and educational services
related to help the family be their child's best advocate.  Advocacy is not
for the dead, it is for the living.  No one should have to re-invent the
wheel or feel alone in this journey.  We are here to serve others needs,
those who ask us to help them find help.  United, we have a wealth of
resources to share.  We are wounded healers who understand the grief that
comes with a difficult diagnosis because, unfortunately, we have been there.
Emmanuel's Foundation will be an intermediary organization to help the
family find support resources in their immediate area that meets their
emotional, spiritual and basic medical needs in a timely manner.  

For example, a client (Buddhist, Jewish, Muslim, Hindu, Christian or any of
the 2,000+ other religions) may share their inner grief after hearing a
difficult diagnosis for their child.  We ask questions to see how or what
they need help with.  Our ears will reach out to help tap them into a
community service that can better help them to live out their belief system
by researching support groups that best fit their circumstance.  

Do any of you on this list feel the urge to reach out to others in the
community and walk by their side in their journey?  I know this seems risky,
especially emotionally as we have all grieved at one time during our initial
diagnosis of our child.  And it does require us to open ourselves up to
showing our own raw emotions.  But I am also working on a volunteer training
program that will incorporate our core functionality and have a back-end
support piece just for the volunteers working with clients.  

 We are not asking you to share your grief or push your personal opinions
with clients; we are asking you to listen to their grief and help mark their
needs based on what they have conveyed.  We ask our volunteers to make a
note of ways the family can feel supported, to bring those needs back to the
foundation so the foundation can make a "link" with the family and a support
service through the volunteer as a "Family Support Mentor".  On the back
end, Emmanuels Foundation will provide a private forum for its volunteers
(Family Support Mentor's)  to share how walking this grief journey exposes
their sense of loss or renewed faith and will offer specialized support for
our own volunteers.  

I am also looking to make alliances with RN's, Mid-wives and Doctors (and
even lawyers).  In the beginning of the year, we will be looking at
potentially pursuing venture capitalists, grants, and corporate affiliates
to help us with marketing and public awareness (among other things).  

This project has grown so big I had to announce it earlier than the "Go
Live" date as I just couldn't hold it in anymore.  It has been about 4
months in the planning and although it is still in the strategic planning
process, we are beginning to implement small pieces as they are completed
but still have a lot of time to put into documenting and registering in the
proper corporate & tax reporting formats!!!  I am currently working with
moms that call us through our web site and they have primarily been the
driving factor in helping us to document the need.  

I look forward to sharing this vision with those led to us or those we find
qualified through experience to share in friendship.

Peace to all,

Janina Arritola 

-----Original Message-----
From: On Behalf Of jwaite
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Emmanuel's Foundation - A Cornerstone Support
Community

----- Original Message ----- 
From: "Kaufman, Faye" >

> How can something be "Christian based" and provide support to "non
> Christians?

My feeling about such groups is that they CAN provide info and support BUT 
you have to be willing to listen to/receive the group/person's religious 
doctrine/thoughts/beliefs as well.

Personally I avoid groups that right off the bat proclaim themselves as 
'religious based'. I've had groups want to have me as an online reference 
for t-14 but I won't if it's a religious site. I'll allow my name to be 
given on an 'as needed' basis for t-14 contact for that group but that's it.

Religious groups also tend to be pro-life so that immediately excludes 
anyone of a pro-choice belief from using that site if they don't want to be 
beaten up verbally.
While the majority of participants on such a site would perhaps be tolerant 
you will always  have the few that make it their mission to 'spread the 
word' and beliefs of their faith and condemn those who don't follow with 
them.

Also, many of those of other religious beliefs (Jewish, Muslim, Hindu, 
atheist, agnostic, etc) are going to be put off if it's a "Christian" site. 
They have their own faith and/or beliefs and possibly aren't going to be 
happy to be receiving frequent references of other religions when what they 
want is trisomy support/info.

Most people looking for support or info are looking for just that. Adding 
other 'requirements' or sub-context to the group makes it less viable to the

general population that could use the help.

For those of the same mind though it's probably a great thing to find others

'just like them'. And if you KNOW going in that a site has this sub-context 
than you are in the position of deciding if it's for you.

My feeling is that those who set up sites that are somewhat exclusionary do 
so on purpose as they have a further agenda to spread.
It may be a basically innocent intent but there is some other 'meaning' that

they are trying to promote. Otherwise it would be just a group with no other

parameters than for info and support--open to one and all with no underlying

message.

Just my opinion!

Michelle mom to Alex (19, partial trisomy 14 mosaic) and Molly (16)
MichiganUSA 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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