Re: Deb/all/also concerning Ann

[Guest guest]

Don't leave us Deb. You have been here since before I was over two

years ago. You were one of the first to reach out to me and welcome me to

the group. We have been through some hard times and I believe we ALL can

get through this small bump if we all choose to. At first I too was upset

and wondered if leaving was what I should do, but then I thought, why should

I lose the one major understanding and giving support I have and why should

I sacrifice the ability to try to help others with the trials of Mito. That

is what this group is about. Not our differences, politics, religious

choices, etc., but our caring for one another and helping each other

" supporting " through everything that Mito throws at us.

As for Ann, it has been a very rough couple of months lately for her.

She went through the hurricanes, serious health issues in her due to Mito,

the decline of her son, put together a web site and compilation of the Mito

Memoirs book, and a major fundraiser at a local mall! How many of us would

be so drained and exhausted dealing with all this, and just want the ability

to be involved with a supportive, loving environment which a support group

is supposed to be like, rather than have to shuffle through tons of e-mails

with hatred and strife. Now she is being attacked just for being saddened

by what is taking place, not wishing to hear any more, and choosing to take

a break, or possibly permanently stay away from the group. Please, can we

all pull together and help one another the way I have always know this group

to be? I sure hope this note won't be taken wrong either as it is said with

only the best of intents.

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (11 mon.) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

guess I will stop posting

> Hi everyone

>

> Gosh, this whole thing seems so juvenile but I got the email below from

> one

> of our listmates today. I was in utter shock as I read it. Somehow,

> despite

> all the other emails on stem cell and etc ended up being my fault. And it

> was

> brought to my attention that it is my fault that Anne left the

> group...because

> of ME.

>

> First off Dawn, let me address some of the errors in your letter. I do

> NOT

> find a way to post everyday. In the past month I have posted six times

> and

> that's it. Three of those have been this week.

>

> Secondly, I wrote Ann privately and apologized for any fault I had in the

> matter. I told her that I still believed that these issues (not politics,

> but

> religion and stem cell) were important to us. I explained, as I did on

> the

> list, that my thinking is that if you go to a church and are talking to

> people who

> are not dealing with the daily issues we are dealing with, they often

> don't

> get it. There used to be a mito-believers list...there might still

> be...but

> our views of God change as we try to wrap our minds around this illness.

> I told

> her that if I said anything personal or offensive, that it was NOT my

> intent.

> I hope she has forgiven me.

>

> Also, I don't want Ann to leave and I do not feel like I am RIGHT. If you

> read my second post on the matter I said that I liked hearing others

> opinions on

> stem cells b/c I haven't really gotten all the info yet. I am an

> open-minded

> person and want to know how others see things...even about religion and

> even

> when I don't agree with them. I don't feel like I am right or wrong...I

> think

> there is room for all of us to have our own opinions and still be

> respectful

> of others.

>

> If I have EVER come across as forcing religion on anyone, I am sorry. If

> you

> met me in person you would know that this is NOT my personality.

> Sometimes

> things are not communicated in email the way they would be in person. I

> have

> plenty of friends who don't believe in God or practice different religions

> so I

> really want to apologize if I EVER did that to anyone,,,because if I did,

> I

> wasn't even aware of it.

> .

> I have not remained in the group to sell my items...I remained to help

> others

> b/c disease course was very unique and quick and when others come

> around that are having similar situations I want to be there to help them.

> I have

> spent much of my own time and resources helping out other families after

> meeting them on the list...doing it off list. The signature is something

> I use in

> ALL my emails, personal and business (its set on default). I personally

> would have no issue with others that do it...in fact, there are others who

> do it.

> I have always visited sites b/c I want to be supportive of moms trying to

> stay home and run a business b/c they can't work b/c of thier child.

> Also, I

> have a page on my business about my family...people have done web searches

> on

> Mito and found that and written me and I have helped them. A girl joined

> the

> list recently because she found my site. I don't see what the big deal

> is...just

> ignore it. I guess that's what I do when people right things I don't

> agree

> with or when people do things that I think are inappropriate.

>

> You obviously do want to fight or you wouldn't have written such a flaming

> email to me! I still can't believe it. Today is an extra hard day...all

> holidays are hard since is gone and its my birthday and THIS has

> been what I

> have been thiking about. When I saw the email I thought maybe you were

> going

> to see what we would do together to make sure Ann was okay...not blame the

> entire thing on me. By the way, Gwen started the post...you were the 5th

> person

> to respond to it and I was the 7th. The whole point of both of my posts

> were

> to say I DO NOT think that politics are important to us as a support group

> but

> I DO THINK that religion and stem cell research do affect us. I barely

> expressed an opinion outside of that. Gwen did tell me thank you for

> saying it had

> a place in the group...she then included some more political stuff which i

> OPTED NOT to read...and others could do the same! The discussion was

> almost 24

> hours from being over when Ann posted...everyone had moved on and were

> discussing stopping services. Who knows WHICH response upset Ann or if it

> was the

> collection. I don't know why this was pinned on me.

>

> Dawn, you were the only one who posted a response to Ann on the list...did

> you write flaming email to everyone else who was part of the discussion.

> If she

> did, I hope you speak up about it.

>

> I don't know who these mom(s) are that you are betting with but that

> statement was only made to make yourself look better and to hurt me. It

> was

> pointless.

>

> So I guess I may continue to read for a short time, but I will not post on

> the list. Unless the other moms in dawns group tell me who they are, I

> might

> post to them privately some time if I have something to add, so just

> delete it

> if you in that group of moms. If everyone feels as you do, then I will

> unsub

> and ask Shirley or someone else to keep me posted on the families and

> children

> I have come to love and care about.

>

> You guys helped me through a lot of stuff...but always, more important

> than

> the medical info was the support you gave on things like quality of life,

> family issues, hospice and death and yes, religion...those are the things

> I

> remember...not discussing gtubes and oxygen.

>

> I care for you all...I wont post again unless I am wanted, which I see by

> some, I am not.

>

> deb...mom to three great kids and wife to one amazing guy!

> http://www.lifeofloveproject.org/

> http://www.heartliftersgallery.com/

> Crazy Lizzies!! PURSES!

>