Re: ON A MORE PERSONAL NOTE/

[Guest guest]

Hi Shell,

I know how it feels to not have family around, there's only so much support

you can get through phone and emails. My family sees it as, not to worry, since

Dasia has me caring for her, that she's in good hands, and everything will be

taken care of. My husband also isn't very supportive, as much as this mission

for Dasia consumes my life, he, a lot of the time just says I think she'll be

just fine, she's perfect how she is. I have been stressing about getting

coverage for gh and he gets tired of hearing about RSS related topics. He's even

gone as far as to say, he didn't think she had it. Which is why I come here

everyday!! He is the most care free person I have ever known, to a fault!! No

trouble will ever befall us in his eyes. Like the consequences of not getting

ght for her, Oh! She'll just be short, he says. He says since she's never been

hospitalized and doesn't have the gi issues, that either she doesn't have RSS,

or she has such a mild form that she won't need the typical

care that the others need. So I have to see to it she gets all the care on my

own! Although, I'm very thankful he's going with me to the convention next year.

Sometimes he acts like he is just as concerned as me, and other times I want to

burst into tears for his lack of concern, when I need to talk to him. I guess he

just hasn't come to terms with it yet, and doesn't want to accept that our

precious baby could face hardships throughout life. It's still early, I

shouldn't be so hard on him, I guess.

Anyway, I hope you get feeling better about everything, we'll be your support!!

This has been such a release for me. I've only been on here since Aug., and I

can't imagine what life would be like without this site! Everyone is so

concerned with how the next person is doing, and I think that is so healing for

all of us.

Fellow RSS Mom to Dasia 20mo 16.4lbs 29in

Malcolm

psabsi6 wrote:

TODAY IS A VERY BAD DAY FOR ME .I HAVE 2 ISSUES.

1. I SUFFER FROM ANXIETY AND DEPRESSION ,BOTH MEDICATION CONTROLLED.

I AM FINDING ALL THIS VERY DIFFICULT TO DEAL WITH. OTHER THAN THE

PROFFESSIONALS I HAVE NO FAMILY OR REAL SUPPORT NETWORK. I AM A SINGLE

PARENT.SKYLAR -RSS -2 YRS OLD ,ALICIA NON-RSS-15 YRS OLD, BRONTE NON-

RSS-BI-POLAR-14 YRS OLD ,AND IGNACIO NON-RSS-5MO.OLD.

HOW DO YOU ALL FIND TIME FOR YOURSELF AND NOT GO NUTS?

TIPS FOR STRESS RELEASE ARE IMARITIVE FOR ME AT THE MOMENT.

2. SKYLAR'S DAD IS GIVING ME ALOT OF GRIEF, I BELIEVE SHE SHOULD BE

EDUCATED ON THIS SYNDROME ,I BELIEVE SHE SHOULD BE WELL INFORMED AND

THAT THE KNOWLEDGE WE GIVE HER WILL BE ENPOWERING WHEN IT COMES TO

DEALING WITH CRUEL OR UNEDUCATED PEOPLE. HE BELIEVES SHE SHOULD NOT BE

TOLD ANYTHING AND IF SHE ASKS , " she's just short "

advice on the pro's and con's and tips on how to inform my child would

be wonderful.

thanks for letting me vent ,

shell