Re: chat :Jeanie

[Guest guest]

Great news about Brockton Jeanie! Thanks for sharing that wonderful news!! I

hope he keeps it up! (the weight that is!)

Debby B

Re: Question regarding RSS look...Jeanie

I totally agree with you on that. Sometimes hope is all you have. BUT, I

have been driving myself crazy with all the worry and " what if's " . I have

found myself sort of " waiting for the bomb to drop " . I know there are alot

of people on here that feel the same way. It's frustrating and exhausting

and painful. Like I said.........it's just MY THEORY. No one has to agree

with me. LOL I just know that, until recently, I have been OBSESSED with

RSS. I eat when I'm stressed out. I've gained 40 lbs. since Brockton was

born! OUCH! I'm getting married in July and I look terrible! For my own

peace of mind, I have to let go of this obsession and take care of myself

and my son. Believe me..........I don't, by any means, think that our

childrens health issues aren't important. I just think that if your RSS

child doesn't have any of the serious issues at the moment, you shouldn't

let it get the best of you. My heart aches for those on this site that have

children with ve ry serious

RSS related illnesses. Fortunately, Brockton doesn't have any of

them............which isn't to say that he never will. I've just decided to

let go for now and worry about those issues when they come.

Thanks for your input.

Jeanie

VisibleWorship@... wrote:

In a message dated 2/8/2006 4:13:23 PM Central Standard Time,

awesome929@... writes:

Sometimes I think we just want to put a name with issues our children have,

such as height and weight issues. I've decided that I'm just going to accept

my son as he is and not give him a label until he has SERIOUS issues. Life

is just too short to worry about things that may never come to pass! That's

just my theory.

Just wanted to pipe in here...not trying to start a debate. I disagree with

this on some levels. Our kids will never be a label to us and to some with

very mild issues, it doesn't matter I suppose. But my child, like many

others here, have hypoglycemia and its nervewracking not having an

explanation of

why your child has this life-threatening problem. If there's an explanation

it helps to know it.

For those with kids with hypoG...with RSS it doens't change treatment but

kids with Fatty Oxidation disorders (many also have hypoG), it would make a

huge

difference. Those children can die if they are not on the right kind of

diet and you don't know if you need that diet unless you have a diagnosis.

I think the yearning for a diagnosis is living in the hope that there may be

a way to fix it. I think that's why we get so determined to get one...how

do you know you can't do something about it, if you don't know what IT is.

Does that make sense? I know some see it as labeling...I see it as living in

hope.

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia

and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo,

with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI

problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)

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