DJ wrote on Sep 13^th, 2004 at 1:29pm:


Ok - I have to add my thoughts....

When I came to this board my intentions were to find (in no particular order) 1) other people who were diagnosed with MM, 2) Opinions and actions that other people had taken, 3) Support and 4) Information.

Yes, this site is a great place to go for support.  But it is also a place to go for information.  I didn't want to hear just the good stuff...I wanted to hear all of it - what to expect - the good things and the stuff that is hard to hear.  I wanted to hear about the good doctors and the bad doctors....but it never took away the right to make my own opinions or choices.  As DJ said in another post - "Information is power"  The more information you have the better you are prepared to make the right decisions.
Just my  .

-Shari

There seem to be a couple of lessons we can all take from this thread.  First, there are times that HOW we say something is just as important as WHAT we say.  Nearly all of us here are under stress from the experiences related to this strange illness which connects us.  As such, we may tend to read things into what others say and should try to guard against this very human failing.   
Secondly, and more importantly, KNOWLEDGE IS POWER!  It is up to each of us, individually, to learn as much as we can about our own or our family member's illness and how it will affect every aspect of our lives.  I am blessed because my wife is a PICU nurse and we have cared for the seriously medically needy for the past six years in our home.  We have cared for 3 children who weighed under one pound at birth.  We have cared for 9 children who were three pounds or less.  One a daily basis, we have had equipment like oxygen concentrators, feeding pumps, even ventilators in our home.  With each new child's multiple diagnoses, we have had to educate ourselves on their medical needs while remembering to treat the child, not the disease processes they are experiencing.

Because of our experiences, when Sean was diagnosed with MM, we immediately knew where and how to search for the best, most reliable information.  (As I said, we are blessed.)  We knew how to sort through the myriad sources to discern which ones to trust and which ones to ignore.

Most of all, when we found DJ's links page and located the specialists, we knew that we had two very good choices to explore.  In our first email to Dr. Scott, we asked for a referral to someone who had performed at least 50 of these corrective surgeries.  Dr. Scott actually suggested that we might want to speak with Dr. Steinberg before deciding where to have Sean treated. 

We would feel quite comfortable with what we have learned about either of these men taking care of our son. 

It is my hope that any newbies who don't have the resources/experience that we do will not be deterred by any of the negative comments that have been aired here ... indeed, I would hope and pray that they would continue to learn as much as possible and find the best way to have their own loved one (or themselves) cared for during this difficult time.

newmmdad wrote on Sep 14^th, 2004 at 12:42am:

Thank you for your comments Steve!

It is said that 85% of the communication process is comprised of non-verbal communication.  Unfortunately, with a message board such as this, people can only read the words you type and miss out on that invaluable 85%.  You can't "read" a person's facial expressions, feelings, hand gestures, tone of voice, posture, or anything else in their typed words.  You only get the basic 15% of what they intend their message to be... the words.

I would bet about 85% of the messages on this board are misconstrued or "read into" by the reader because the author of the message wasn't able to completely convey how they could TYPE, exactly what they wanted to SAY.

Just remember... when you read a message on this board, you are only getting 15% of what the author intended to communicate to you.  Don't take everything so literally all the time!

-DJ

BTW, don't worry about me getting my feelings hurt by a post.  I'm pretty good about taking posts for the words, and not "reading emotions into them".  If someone gets me rialed up, I'll be sure to let them know.

DJ wrote on Sep 15^th, 2004 at 12:22pm:


Why do you think I hardly ever come here any more?

1. I don't have the time, between working full-time and raising my 8-month old son.

2. I felt that no one ever understood anything I said, and I got attacked when people misunderstood my posts because they read into things incorrectly.

3. My loved one with MM felt unwelcome here, and eventually I did too.