(H)~ Understanding our feelings

[Guest guest]

,

I just wanted to reply to one of your comments you made to Reah.

~ " Friends outside of this group - in " real

life " (neighbors, etc.) just do not seem to have the understanding

of what we deal with (most of them try though) and it can be quite

frustrating trying to explain to them the daily worries and fears

that we face on a continuing basis. "

This is so true. It is great to have this list and group of people

that REALLY understand what we deal with and never try to minimize

our worries. It really is frustrating because I just feel sometimes

that people think that is " just small " . They don't understand

everything. They don't know what goes on behind closed doors or all

the appointments we have, all the worrying about hypoglycemia, all

the surgeries, all the tests, the x-rays and that exposure to

radiation that freaks me out and makes me wonder if it will effect

him in later life. All the nights spent up with a sick child and

trying everything to make him feel better. Giving breathing

rtreatments around the clock. Worrying about restricted lungs and

how hard he is breathing because he is so sick. All the 2 a.m.

alarms

telling me it is time for more formula to be added to his feeding

bag. All the times he wakes up in pain because he ate some ice cream

and then went to bed an hour later and then woke up in pain at

midnight because he has delayed emptying and the ice cream just sat

on his belly. Then it comes shooting out of his g tube and then he

can go back to sleep feeling relief. What about all the hospital

trips? What about all the worrying? What about the fact that even

though you have known your child has RSS since he was 17 months old,

you are still so scared you don't know everything you should know to

keep him safe? What about all the confrontations you have had with

so many doctors who claim they know about RSS but don't have a clue

as to how to properly treat your child? What about all the times you

have spent fighting with doctors and explaining that " No, he can't

have D5, it has to be D10! " ??? What about the fact that you live so

many miles away from the only specialist in RSS and she is the only

one you trust to get him started and monitor him on GH, but it is so

hard to get to New York because of financial reasons and having

others take time off work in order to take care of your other son?

What about all the guilt? And, you love your precious child so much

and he is so perfect in your eyes and hate the fact that he deals

with all he deals with. And, you get so tired of hearing, " Yes, but

it is all he knows. This is normal to him! " UGH!!!! Is that

supposed to make things better?? NO! And, what about so many of us

who are dealing with our child's issues, plus, trying to deal with

insurance issues, financial issues, and family matters all at once?

Gets to be a little much.

So, see . When we were talking on the phone yesterday, this

is what I was trying to tell you. And, I saw Jodi Zwain mentioned

this to you also. You never really get over the feelings you are

going through. They kind of come and go. And like she said, when

something major comes along is when they normally pop up again. And,

the reason I am feeling all this right now. I told you of 's

impending eye surgery. It gets to me so much that he has to go

through all this, but I know I can come here and I will have people's

support. Guys, I didn't write this to get pity. I am just writing

feelings that I am sure many, if not all of us, experience from time

to time. I am just proving 's point. It is great to have

this list serve where everyone is on the same playing field and we

are all dealing with a lot of the same issues. And, we are all here

to support one another because people in " real life " just don't " get

it " .

Done,

Jodi R.