Re: Chat-Jodi R.

[Guest guest]

Jodi,

You do not sound selfish at all in your message about your feelings

for and with . I have lived those same feelings for 15.5

years and others have, too. It is very normal. And it hurts. And

it sucks. But you will learn to make that proverbial lemonade from

the lemons that you both have been given and life will seem brighter

as time goes on. I don't think the pain ever really goes away, but

you learn to see things in a more positive light and from a

different prospective.

Have you read the Trip to Holland story? That has been with me

since Max was a baby and from time to time I have to go back and

read it to reassure myself. Other things that help are the MAGIC

Convention (wait until you go this summer - you will feel like you

are with a giant family and all of 's " differences " will seem

so very, very normal for the four days you are there), posting on

the listserve and just plain old time.

I really felt that same old thing again today, as a matter of fact.

Max has had hiccups, really bad ones, the whole time we have been

here in Florida on vacation. It seems like each time he eats, he

gets them and they go on and on. This used to be a precusor to

throwing up, but Max has learned to control his vomiting to a

certain extent (YEA!!!). We were in Animal Kingdom when a

particularly difficult attack came on and I just wanted to cry.

Here we were in the " magical world of Disney " and my son was not

feeling well at all, terrified that he would get sick in front of

hundreds/thousands of people and I could do nothing. At one point,

I wanted to yell at him to stop it and I had to bite my tongue to

keep from doing it. Then I got really sad. He has dealt with these

GI issues from the day he was born, had some major surgery this

summer which was supposed to help, and all it has done is trade one

problem for another.

Then I decided to stop feeling sorry for us and look at the things

that have really excited us. For example, as you know, Max finally

hit 5 feet last week. He is working at the cooking studio where I

work and loving it, and they love him. Every time we go somewhere,

Max manages to make friends with some adult, even to the point where

we saw a Broadway show, sat in the front, and, at the curtain call,

the actors pointed to him and spoke of how cute he was. And Max is

happy in high school, much happier than he ever was at the private

school we sent him to at the cost of $20,000/year. I live for these

moments.

I know you don't like to hear that does not know life any

differently. I did not like it, either. But if you read that Trip

to Holland story, you will know that he is experiencing life in a

different way and that there are many things he WILL experience that

other kids won't - and they will be good ones.

I know I have rambled, but I felt your feelings and could understand

them so clearly that I just had to reply. It hurts like hell now,

but it will get easier. I promise. Just you wait until Chicago.

Life will never seem the same again!!!

Jodi Z.

[Guest guest]

Hi Jodi,

I am glad I am not alone in feeling this way. I am so proud of

and all he has accomplished. I mean, he is gaining weight so

well now, and in just a short period of time he got head control,

started sitting up, and now he is cruising furniture. All of this

since the end of October. That is a fabulous feeling. But, like I

said, and like I know you can relate to, I hate the throwing up. I

guess that is my biggest obstacle to overcome. I am not ashamed of

in any way, I don't shelter him because of the RSS, and I

don't regret for one minute having him. I just think sometimes, I

wish I had without the problems. I fell terrible for thinking

that, but I do. The thing is, I want everything about him to be the

same, just not having to be overstuffed by a feeding tube and then

throwing up that is terribly hard on him. I love his smallness and

his delicateness. I love him. I just hurt for him. Does any of

this make any sense at all?

I understand totally what you were saying about having to bite your

tongue not to shout out at Max. You weren't wanting to shout at him

per say, you were wanting to shout about the problem itself. You

know Max can't help it, and I realize can't help it. My

husband gets upset sometimes when spits up, but it isn't

because he is mad at . He is mad at the situation. I am the

opposite when throws up. I give myself totally to him when he

spits up. I am gentle and caring and I rub him, stroke him, comfort

him in any way. I want him to know that I understand and will do

whatever he needs me to do to help him through it. Maybe that is why

he has started to yell momma when he gets ready to spit up. Plus,

every time he is on the hospital when they start really bugging him,

he'll yell for me. It brings me to tears that does, but it makes me

feel good too. It is hard to hold it together, and I know that I

have failed a couple of times and let out some frustration.

I told you before that when I met Max, I was drawn in to him, too.

There is just something about him. He is very charming, Jodi, and

you better watch out when it comes to dating time! ) Hee, hee.

Max is very sweet and lovely. I enjoyed talking to him and he is

very handsome! He just has a way with people. It is a gift. He

will go far, I am sure. I hope grows up with a sweetness like

Max has. So far, has those long beautiful eyelashes going for

him and those blue eyes are to die for! ) I got my blonde haired,

blue eyed baby!!!

Pat sent me the Trip to Holland story. It was good. I am hoping

that I will be able to go to Chicago this year. I would love to meet

everyone. Let's just hope I can make it! The support here has been

so great and I am glad I have all of you to talk to and ask

questions. Thanks so much for everything Jodi, and all of you. I am

sorry you had to hear me whine and bellyache a little about this.

What would I do without you!?

Thank you and take care,

Jodi R.

's loony mommy )

> Jodi,

>

> You do not sound selfish at all in your message about your feelings

> for and with . I have lived those same feelings for 15.5

> years and others have, too. It is very normal. And it hurts. And

> it sucks. But you will learn to make that proverbial lemonade from

> the lemons that you both have been given and life will seem

brighter

> as time goes on. I don't think the pain ever really goes away, but

> you learn to see things in a more positive light and from a

> different prospective.

>

> Have you read the Trip to Holland story? That has been with me

> since Max was a baby and from time to time I have to go back and

> read it to reassure myself. Other things that help are the MAGIC

> Convention (wait until you go this summer - you will feel like you

> are with a giant family and all of 's " differences " will seem

> so very, very normal for the four days you are there), posting on

> the listserve and just plain old time.

>

> I really felt that same old thing again today, as a matter of

fact.

> Max has had hiccups, really bad ones, the whole time we have been

> here in Florida on vacation. It seems like each time he eats, he

> gets them and they go on and on. This used to be a precusor to

> throwing up, but Max has learned to control his vomiting to a

> certain extent (YEA!!!). We were in Animal Kingdom when a

> particularly difficult attack came on and I just wanted to cry.

> Here we were in the " magical world of Disney " and my son was not

> feeling well at all, terrified that he would get sick in front of

> hundreds/thousands of people and I could do nothing. At one point,

> I wanted to yell at him to stop it and I had to bite my tongue to

> keep from doing it. Then I got really sad. He has dealt with

these

> GI issues from the day he was born, had some major surgery this

> summer which was supposed to help, and all it has done is trade one

> problem for another.

>

> Then I decided to stop feeling sorry for us and look at the things

> that have really excited us. For example, as you know, Max finally

> hit 5 feet last week. He is working at the cooking studio where I

> work and loving it, and they love him. Every time we go somewhere,

> Max manages to make friends with some adult, even to the point

where

> we saw a Broadway show, sat in the front, and, at the curtain call,

> the actors pointed to him and spoke of how cute he was. And Max is

> happy in high school, much happier than he ever was at the private

> school we sent him to at the cost of $20,000/year. I live for

these

> moments.

>

> I know you don't like to hear that does not know life any

> differently. I did not like it, either. But if you read that Trip

> to Holland story, you will know that he is experiencing life in a

> different way and that there are many things he WILL experience

that

> other kids won't - and they will be good ones.

>

> I know I have rambled, but I felt your feelings and could

understand

> them so clearly that I just had to reply. It hurts like hell now,

> but it will get easier. I promise. Just you wait until Chicago.

> Life will never seem the same again!!!

>

> Jodi Z.