Re: (H)~ Understanding our feelings

[Guest guest]

Jodi,

Hi.I just wanted to let you know that you and

are in my thoughts and prayers. I hope

evrything goes wonderful with his surgery. Thanks for

the post. As I was reading it I felt as I was also

getting to vent,silly I'm sure as I do not have to

deal with everything that alot of you are dealing with

now. However the fears of what might happen in the

future and the feeding wars, I mean you can't hold a

2.5 year old down a shove the food in her mouth and

sometimes your so tired that it is hard to be creative

enough at every meal to get your child to eat 2 or 3

bites.So many moms,like yourself, are going through

some much more than I am now and sometimes I don't

feel I hsve the right yet to vent as you do. I'm just

always on pins and needles, afraid of that might

happen next.If you ever need to vent again I'd love to

listen. I wish I could get some moms together and us

some how have a spa day, I sure could use one:)

In faith,

Reah and Chloe:)

--- Jodi wrote:

> ,

> 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.

>

>

>

>

>

__________________________________

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[Guest guest]

I agree...I just had this conversation tonight with friends who came

over. They think Emerence just " looks perfect " ! And they don't get

it. They do a bit more now I think but most people just do not.

When I was told Emerence had IUGR and would be a little person I

couldn't find anyone at all to talk to! They told us she might not

live to be born and then I never felt her move so I literally spent

my entire pregnancy terrified. I can still feel the sick dread of

waiting the last minute before they would do one of her many many

ultrasounds to check her because I was so sure she just wouldn't be

alive anymore. Just like we had gone and found h er twin had died.

For me I just wanted her alive and was prepared for her not to be

perfect...we toured the NICU twice (and didn't even use it!). I

still have these scary dreams like the other night I dreamed she was

so little and in our bed and one of us rolled over on her...I was

frantically trying to find her (half awaking didn't realize I was

dreaming) and whacked my husband so hard becuase I thought he was on

top of her, smushing her that he almost flew out of the bed. It

wasn't until I turned the light on and ran into her room and crashed

throught eh gate on the door (classy of me, and so graceful) and

found her asleep in her bed that I realized it was just a dream.

However my husband just thinks it is a manifestatin of how much I

still worry. Sometimes I also think people think because she is SGA

she is fine becasue it doesn't ahve the word syndrome in teh name...

>

> ,

> 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.

>

[Guest guest]

,

Wow! What a dream! I think maybe your husband is right about the

worrying. I still have dreams about , too. I keep dreaming of

him having blood sugar issues. But, of course, we have been talking

about it a lot lately on here. ) I think we all constantly worry

about our kids and it manifests itself in different ways for all of

us. I hear you about the SGA. But, honestly, you have as much to

worry about. That is why we are the RSS/SGA division!!!!! Our kids

are treated in the same way. And, Emerence has a lot going on based

on reading your survery I got in my mailbox this morning! )

Take care,

Jodi R.

> >

> > ,

> > 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.

> >

>

[Guest guest]

/Jodi - You know - after reading your message I wanted to say

something about your SGA comment - but, wasn't sure how to word it.

You know - Jodi said it perfectly. You do have as much to worry

about - and a label doesn't mean anything. The health of your child

is what matters - and you are doing a fantastic job with Emerence

and her health. I so agree with what both of you have said. Well

done on your thoughts. Thank you so much for posting them too - it

really helps me and hopefully others feel like we are " all together "

on our journey to see the best outcomes for our children.

- H

> > >

> > > ,

> > > 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.

> > >

> >

>