[tri-wings] REPLY to the TRISOMY LISTSERV: Emmanuel's Foundation - A Cornerstone Support Community

I want to thank the many who responded privately or on the list :)  I also
want to thank those courageous enough to ask the questions on the listserv
that others may have been afraid to ask.  

I love this list.  This list is a wonderful support for so many people who
have to ask questions that they don't know where else to go.  Or for people
who need a quick answer.  

I continue to learn so much from all of you guys.  Especially in the
beginning when I had questions that I later learned were the most repeated
but when I was new to this, you guys were patient with me.  Now that I see
how many times the same questions cycle around for newcomers, I thank you
for being patient with me when I was a new comer.  And I thank you today for
being patient with me as I grow.  We have all grown.  And with each cycle of
the questions, our understanding may become a bit changed.  

I have always been sOOOOO very thankful to have the many online groups of
families to speak to who understood me in a completely different way than my
regular group of friends.  I just wanted to say that I admire everyone here
on the Trisomy ListServ for their views.  I wondered about one of the
responses we got and just have to mention that No one should have to be
afraid of what one of us says.  We all have a different perspective and the
collective conscience of us all is important, no one better, no one less.
DO NOT BE AFRAID - YOU ARE NOT ALONE !!! :)  This should be a safe place for
us all to speak, we don't need consensus, and we should embrace our
diversity to learn the most of things.  And I thank you all for being a part
of 'my cornerstone'.  

When our Anthony went through all his issues and the dreaded incompatible
with life diagnosis, I felt I needed to find as much info as possible.
Being a researcher at heart, I thought that would be easy for me.  But the
saying of, 'It's not what you know, but who you know', really came to life.
I found this Trisomy listserv community through a referral.  All my
researching didn't bring this community anywhere close in my discovery but a
friend did.  And for that I am thankful.  I suppose in the beginning, my
focus was a bit different, I recall all the raw emotions and how I sought
out help in different directions.  As I get deeper into this, I am still
finding new resources.  No-one should have to reinvent the wheel.  It was
this community as well as select others that inspired Emmanuels Foundation.
The team at Hospice was certainly one of them too.  Although we were only in
the program for a few months, it was a learning experience, then to go on
(all on our own) without hospice we really felt unsupported but brave
because we had to fight for that right.  I had to find my way again.  Again,
we tapped into our community and our new normal was once again brought back
to a calmer reality, although none the less the same diagnosis.  

I live in an area that has a lot of resources but we found with our
diagnosis, no one really accepted our diagnosis, issues or understood how
similar our situation was to theirs.  We didn't fit into any existing group.


We were denied by the bio-ethic committee at 8 hours old for surgery, only
to realize that was like being black balled.  We fought against it and
eventually found a way around that issue.  At 2 weeks old, we were denied
basic services mandated by the American Disabilities Act, until I called the
southeast regional director to ask why we were discriminated against what
was supposed to be federally regulated by ADA.  We watched them back paddle.
At 30 days old, we were forced to think about DNR's as a reality and told
there really is no hope, don't try to hold on anymore.  We opted for hospice
as an avenue to gain the right to comfort care but when our insurance
benefit ran out, Medicaid took over his healthcare and we lost control of
his healthcare for 30 days ... and Anthony almost died from medical neglect
on Christmas day last year in 2005.  Oh some very big stinks have happened
since then... and we even learned that each county has its own rules for
investigating a child's death which is protected if you have hospice.  We
fought to get our child OUT of hospice after last Christmas's incident and
we learned what situations cause the parents to lose control of their
child's healthcare (when using certain governmental agencies).  We also had
to protect our other children from an in-house death (and those horrible
county investigation rules where they interview the children and may cause
more emotional trauma)  so we had to learn about documentation for the
coroner.  Everyone was curios why we were asking as if we were trying to
cover something up.  But, thankfully, we had our doctors document
everything.  The doctors came to love me as their newest shiniest parent
friend.  (just kidding - that was sarcasm!)  We learned a lot and the whole
time, we knew that if this was happening to us, it was happening to many,
many others.  And that saddened us more than our own situation.  We prayed
everyday for the families who faced these situations, we prayed everyday for
families in similar situations to get the help they needed and to feel
supported.  We prayed for their intentions and we asked they receive
respite.  For every prayer we had for our Anthony, we had a similar prayer
for every other child suffering around the world.  

Of course, my newest group of online friends and my child-illness-related
network here in Atlanta didn't take away from any of the emotional pains we
were going through, there were certainly a few higher points (or insights
from others) that helped us get through the lower points.  All the while, my
hubby lost his job due to weird circumstances like corporate scandal outside
of his involvement and what not and I was no longer working due to being a
stay at home 24/7 ICU nurse of a special needs child.  We have somehow
survived there harrowing years, by the grace of God.  We are still trying to
get back on our feet and we never have enough to get by but scratch by each
moment like the miracles we that occurred in Anthony's life.  Today, I
simply thank God for his grace.  His grace is sufficient for me.  

I apologize if I have offended anyone with my introduction of Emmanuels
Foundation or with its request for support, it was not my intent to offend,
but to mention with great enthusiasm (my own passion) how we are trying to
reach out to others in need.  In one way, helping others help to heal my
grieving heart.  I drown myself in helping others needs, else I drown in my
own issues.  Yes it is based on our own experiences.  It is a vision that
drives our mission.  I read all your responses and really appreciate you
sharing your perspectives.  Also, to Karen, You always have offered so much
advice to so many with such a diligent timely response.  Thank you for your
enthusiasm.  You are a wonderful help to so many and I appreciate your
making this listserv available to all of us.  I was also made aware that you
receive no funding nor ask for funding so I wanted to ask how that is
working for you.  

This is a great group and once again, I am appreciative of all your good
points to ponder.  The Greek used to debate over issues like this and they
called it Philosophy.  Some believe that any topic about God falls into
religion while others think doctrine falls into politics and still some feel
religion is a man made thing (for which I agree).  Yet it is faith that has
no religion, it is faith that has no political correctness, and it is faith
that drives the human spirit to hope for things not yet seen.  

With Love to you all, 
May you all continue to have faith,  


Janina Arritola

Here is our updated link to the interim support link until the official
agency site for Emmanuel's Foundation is developed and published:  
http://gregoryarritola.tripod.com/emmanuels_foundation.html 


-----Original Message-----


I'd like to mention that all of us here, on Karen's tri-family and tri-med 
sites, do so by the grace, generosity and fortitude of Karen.

She pays for ALL OF THIS out of her own pocket and has never made a public 
plea for financial help.

If anyone is so inclined to help her with the costs for this area of the 
Internet we all use, you can do so off of her website at 
www.trisomyonline.org

Karen won't ask for herself so I'm opening my big mouth.  :0)

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


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

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

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