Re: Later age diagnosis

July 10, 2003

,

I totally agree. I get tired of people telling me how " wonderful " I am

because I'm not. Basically, my child got a raw deal at birth and I cope with

it. But the real person who copes with it is her, all the blood tests and

surgeries and pain are hers and she's the one who is really wonderful for

managing so well. We parents just do the best we can and some of us do

better than others because of luck or circumstance or (rarely I think),

motivation. Sometimes I think telling us how great we are is actually an

excuse to stop the person saying it worrying about whether there is more he

or she could be doing.

Cheers,

Marea Howe

Re: Later age diagnosis

>

> Kristi,

> I just did what I had to do. I don't think of myself as anything

> unusual. When was 6 mo. old and they put her trach in I was

> terrified. I told the doctor, " I will never master the care and be

> able to take her home. " I actually walked out of the room in the

> middle of a lesson crying and yelling " I can't! " The mom of the

> trach baby in the next bed came after me, took me by the shoulders

> and shook me. She said, " If you don't care for her, no one will! "

> Her baby died in spite of the trach. I have never forgotten that mom

> or the lesson I learned that day.

> I agree ever parent, friend, family member that helps with a

> special child are a hero!

> Give Gracie a hug for me.

> Lynn

>

> > Lynn-

> > Wow... what a mom you are... everyone here is! I just wanted to

> let you know

> > that as I read what you wrote about I got chills... can you

> imagine how

> > different her life would have been had YOU not been her mother?!

> What you've

> > done (and continue to do) for her is inspiring.

> >

> > Kristi Swann

> > Mommy to Gracie 12 weeks, wife to & Dog mom to Sophie :-)

> > Roseville, CA

> >

July 10, 2003

Michele wrote:

> Gotta chime in here. So many people express to me their admiration etc as

if I am a saint for loving and caring for Aubrie. I don't think so. As

Lynn said, " I just did what I had to do " . Don't we all? Isn't that what

any parent would do? And isn't there always even more that we think we

could be doing if only??

>

I have to say that most parents do what has to be done. But there are those

I just have to look at and wonder why they have children and what planet

they came from.

One example I remember was one of Rick's co-workers at a previous job. When

Ken (non-CHARGEr) was an infant, he had laryngio malacia (floppy larynx

cartiledge) that required him to have oxygen overnight and for long naps

until he was a year old. One man asked Rick how we did it, and what would

we do if insurance didn't cover the cost of the oxygen? Rick could only

look at this man in total amazment. Rick then said that if Ken needed

something that was that critical, you do what you have to do; there is

really no choice; you find a way. He then asked the man if it was his kid

what would he do. This man just shrugged, shook his head and walked away.

Some people have no clue!

I too get tired of hearing how I must be " special " , and " patient " , and

" always so calm " . If they only knew! I don't feel special; I've had a hard

time learning patience (still very much in progress!), and I'm rarely calm!

You do what you have to do - for any of our kids - and go on the best you

can. That's all we can do.

Friends in CHARGE,

Marilyn Ogan

Mom of (10, CHARGE) and Ken (13, ADD)

Wife of I-Been-Workin'-On-The-Railroad-Rick

Fishres, IN

oganm@...

PS: Rick works for CSX Transportation (railroad) doing radio

communications, etc. The storms we've had this week have kept him away from

home every night and most of the day since Sunday night, and it just keeps

coming! Someone turn off the faucet!

July 10, 2003

Isn't it funny how humans are?

It is hard for any of us to imagine someone else's life. We see the

troubles they deal with as difficult and cannot imagine ourselves going

through something like it, but when we look at our own lives, it is just our

life. We have no choice so we just keep on living it, doing the best we

can. Are we any more a saint than another parent, no, but to those who

cannot imagine life as we live it, they think we are. We know they also

would do the best they can with the resources they have, whatever that best

might be.

Kim

>

> It can be quite frustrating for me as well with two kiddos with problems so

> close together. It was funny in a way when I found out I was pregnant with

> , my youngest, that day I was having a friend take me to the hospital

> for

> a CT scan for Kai because Troy was at work and doing his billion it seemed

> like classes, he teaches an average of 11 a semester, but anyway, she was like

> so

> when are you guys going to have another kid. Well Kai was barely one when

> she asked. Well I told her when ever God sends us another one I guess.

> Luckily

> the CT scan was cancelled so no xray exposure but still I was pissed off

> cause I was stranded and had to wait for a ride home from the medical center

> but I

> found out that night I was pregnant. It was like a test I guess if I was

> ready. But I get " oh man I don't know how you do it with two special needs

> kids. " Well I don't have a choice. They are the ones who have to go thru it

> and

> if I didn't do it who would. But people are amazed at my answer when I say

> that. It's like come on, if you have a spouse with cancer, you usually take

> care

> of them right, why not take care of a special needs kid. They are shocked

> too that I'm not an emotional mess all the time and I'm so " together " . They

> don't see me when I cry for an hour cause the day has been too stressful or me

> getting angry at people for being stupid, medical wise. Or me having to yell

> at the insurance company for a stupid mistake on the filing party part. I am

> just me. I am not an angel or a saint. I just am a mom who loves her

> children

> dearly and would do anything for them so they have the best life possible.

> They are the truly courageous ones. They are the angels. They go thru some

> scary crap and yet most of them, after the scary part is over, smile and are

> so

> happy. I am just the mom, they are the fighters. Plus I have an amazing

> husband who hold me up when I am tired of fighting. If I didn't have him, I

> couldn't be so " strong "

>

> Liz

>

> SAVE 20% on Gasoline <A

> HREF= " http://www.jowoods.appgas.com/ " >http://www.jowoods.appgas.com/</A>

>

July 10, 2003

hi,

same here! i don't like it when i get called a " good mother " ... especially

when i'm just mothering in a 'regular' sort of way! it makes me wonder how

others mother their children ;0), i feel like i'm just trying to do the best

i can ... i usually get upset 'cos it seems someone will say just that,

right when i feel i could be doing more somehow ...

i also get cross when people say to do things " because of special needs " ,

when i feel that *all* children deserve to be listened to and have their

needs met...

sorry we've all been facing similar frustrations, nice to know we're not

alone,

Jo

ds Ben 5-4-99, ds Josh 20-8-02, CHaRGE'r + uclbcp

----- Original Message -----

> It bothers me when people treat me like a saint when I know that I am not.

I am not a perfect parent to either of my kids, but I do the best I can

July 10, 2003

ACtually, I have a little different take on it. I get upset when they say,

how can you do it? How can you take care of your child with all of his problems?

I am looking at them thinking, you dont have as wonderful of a situation as

you try to convey to others....there are plenty of problems in family life

besides a child with special needs.

I feel like they are patting themselves on the back that they dont have the

life we have...but in turn, I may look at most of them and think, " I wouldnt

trade places with you because you have your set of problems " I never say

that directly to anyone but I have had times when I have wanted to. They may

also say that they have a child who has special needs, but cant compare to the

problems we face. I dont find that a comforting comment.

So I do agree with not taking those compliments of being this great mother as

compliments... I am glad to hear others feel the same as I do.

Sorry for rambling.

Well, that is all for today. ck

July 10, 2003

I also have to chime in here, cause I feel like I'm one of the people who

got this ball rolling. I agree with everyone of you. I hear--oh my, three

boys so close together --and.....they don't want to say it but with special

needs too, you certainly have your hands full, how do you do it? it's my

life, I just muddle through and do the best I can, some days that's not so

great ,other days, it's ok, and once-in -awhile a get a really great day for

everyone. Just like everyone else.

I wish I had the secret recipe to make everything ok for everyone, but I

don't I play with what I was dealt and go from there---and some days I don't

do much, other days there is energy to spare. I can say I have better

parenting skills than some--but worse than others--from what I see, but, I'm

not in their shoes 24/7.

I hope at least some of this makes sense---I guess I should just say I'm

like a mamma bear and I have 3 cubs I do what I need to do to take care of

my cubs and pappa bear too.

maria