Re: Chat: Jodi R

[Guest guest]

Jodi,

Okay, I didn't mean to make you cry. I am sorry. And, I understand

what people are trying to say when they say " he doesn't know any

different " . What you said was what I was trying to say. He may not

know differently, but I do. It just really hurts me to see him go

through all he has to go through. And, when he cries, " mommy,

nooooooo! " , that doesn't help. The one thing that has found

for himself when he has to go through this stuff......he says, " Mommy,

will you hold my hand? " Talk abut something making you cry!!!

I try not to project any negative feelings on or in front of .

I try to be his strong, loving mommy. I treat him as I treat my

oldest son. I wouldn't trade for anything. I am proud of who

he is, and he is who he is because he has RSS. I understand that.

But, it is still hard to see him have to go through so much. It is

hard to explain, but Jodi, somehow I know you know what I mean.

This all began at my 20 week ultrasound on Valentine's Day 2002. I

had Rod with me and my sister. That is when we found out he wasn't

growing right. I asked about Down's, dwarfism, etc. and they just

didn't think that was what it was. I went home bawling after reading

a card my sweet husband had left in my car saying how proud of me he

was and how great of a mommy I was to and our new little

baby. Ugh, I felt terrible, like I was a bad mommy because my baby

wasn't growing right. I laid in bed and cried. Poor was so

confused and I tried to talk to him about why mommy was sad.

Went to a specialist who said he would have Trisomy 18. Wouldn't

live long if he even made it out of the womb. Was induced because he

stopped growing. was resucitated on the spot. But, at least

we found out he didn't have Trisomy 18, but didn't know what was

wrong. In the hospital for 3 months. Doctors pulled Rod and I in

the room and basically told us they didn't know waht was wrong with

and didn't know waht his life would be like. Didn't even know

if he would make it at home! It was another devastating day. But, I

have pulled myself together and I just roll with the punches. But,

you know, sometimes it just all adds up and I have days that I wish

things were different. It's not an " Oh I feel so sorry for myself " .

I guess it is more like the " still mourning " and wanting him to be

done with all this. You understand, don't you???

I remember the story of Holland. And, I am proud to be in Holland.

But Italy sounds good every now and then, you know?? My mother-in-

law was in Holland, too. And I always told Rod I wouldn't be able to

do what she does. Boy, I guess God wanted me to know how much I

would LOVE Holland! ) I do love the tulips. Actually, they are

my favorite flower. And one of them is downstairs waiting for a

pretzel!! Hee, hee.

Jodi R.

>

> Okay, now that I am wiping the tears from my eyes, I will try to

let

> you know how much you touched me with your post about your

> feelings. You nailed them right on the head. You are so good with

> words.

>

> Jodi, there is some truth to the thought that our kids don't know

> life any differently from what they are experiencing. It is us who

> know that life can be different and it is us who feel for them,

> knowing what our hopes and dreams are/were changed in a heartbeat.

> It is NOT FAIR that they have to go through what they do, but this

> is their lives. What we have to do is try to make the lives that

> they have been given better ones. We have to be careful not to

> project our feelings of grief and loss on them.

>

> I have been struggling with this for weeks now. It has been a

> setback with Max and his hiccups and stresses. It scares me to

> think of what will be for him in the future. When he was born, my

> husband and I wanted him to go to college, to have a professional

> career, to marry a wonderful woman and have a family. It looks

like

> college is not in his near future, although that could change. He

> won't be that lawyer or doctor that we had hoped. He claims that

he

> is never getting married, but that does not worry us because what

17

> year old boy wants to think about marriage? And if he decides not

> to marry and have kids, that is his decision. It has nothing to do

> with RSS. We just don't want him to be lonely.

>

> Sometimes, however, I get so angry at the fact that Max has RSS.

I

> get angry at the doctors who did not know he was hypoglycemic and

> the fact that it could have affected his brain and learning

> capacity. I am furious and always will be with that obnoxious GI

who

> first treated him and said, " He has reflux. He'll outgrow it.

> There is nothing that can be done. " Yet I try to keep the feelings

> in the background and not let them surface too often.

>

> Remember that Trip to Holland story? We ALL were ready to go to

> Italy. We were all packed and at the airport. We thought we were

> on the plane. Now we are in Holland and we have to look at the

> wonderful tulips, windmills and other great things they have

there.

> (You can smoke pot in Amsterdam!!!! Sorry, I never tried it, but

> there are those who enjoy it....) We won't know what Italy is

like,

> but those who are in Italy will never know Holland, either.

>

> Jodi Z

>

[Guest guest]

Hey. But as long as he likes it and is happy.....right!? ;o) Well,

sounds like he is doing well. Thanks for sharing. I may have missed

that if you posted him not working before. It has been hard at times

to read the list. Ugh. Way too busy. )

Jodi R.

>

> Jodi,

>

> Max is not working anymore. When he had those awful hiccups and they

> became a tic, we realized that he was stressed out and had to weed

out

> the stressors. One of them was that he was being overworked and

> underpaid, like the rest of us, I might add. But he is happy. He is

> managing a computer club to develop a website devoted to horror

> movies. Yuck.

>

> Jodi Z

>