ON A MORE PERSONAL NOTE

[Guest guest]

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

[Guest guest]

Hi Shell,

We are all a little nuts, we're parents -- so welcome to the group.

Personally, I agree with you. Your daughter should know she has a

treatable medical condition know as Silver Syndrome.

I don't have any great advice on how to inform other than to answer

her questions about her size when she asks them. When she is older

(4 or 5) you can explain in simple terms about RSS etc. Then at 6 or

7 you can talk about the birds and the bees. Finally, at 8 or 9 you

can explain macro economic theory -- just kidding

I hope this helps.

Ken M

>

> 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

>

[Guest guest]

Hi Shell,

As an adult living with RSS, I firmly believe that

your daughter not only should know what is going on

with her syndrome and her healthcare, but she also has

a *right* to know. I apologize, because I haven't

really been keeping up with the posts (I'm a first

year law student, so my life is crazy right now), so I

don't know how old Skylar is, but my advice is to give

her as much information about RSS as is appropriate

for her age and maturity level. Myh parents always

involved me in my medical care as much as was age

appropriatley possible and never tried to keep my

diagnosis from me. I beleive that having information

was incredibly empowering to me on both a visceral and

emotional level. Not only did it give me a response

to people who would approach me and ask me questions,

but it also made me feel a little more in control and

a little less afraid during all of the medical

appointments, testing, etc. Anyway, that's just my

opinion as someone who is living with RSS. If you

have any further questions or wish to discuss this

issue any further, please don't hesitate to contact me

either via the list or privately at hillaryjorgensen@

yahoo.com (no space). Welcome to the group, by the

way .

~Hillary

23, RSS

[Guest guest]

Shell,

I hope things get better for you. I can imagine what you are

feeling. Shoot, I feel that overwhelmed sometimes too and I have a

pretty supportive husband!

I agree that Skylar will someday need to know about RSS. It would be

an injustice to her if she didn't know. What happens if she was in

the hospital or in some kind of emergency and they needed to know

about her medical history? I mean, there is a point where it will be

imperative that she know she has RSS and know what goes along with

it. You can't keep making up excuses as to why she is sick so much

or why she is having blood sugar issues, or why she is smaller than

her friends, or whatever. It is ridiculous to think otherwise. I

don't know when to tell the kids about RSS, but I agree to give her

age appropriate information. RSS is so complex for me to understand,

let alone a small child. So, little pieces of information when they

are young, but when they get older it would be important to explain

it more in depth.

I hope you start to feel better soon. You are doing a great job

whether you think you are or not. We all feel the pressure from time

to time. I can imagine how hard it is for you with 4 kids, though.

Take it easy and you will get through it. Sucks though, I know.

Jodi R.

's mommy

>

> 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

>

[Guest guest]

Shell - how are you doing today? We are your support network my

deal -and we are so glad to have you and that you feel comfortable

enough to share your thoughts with us - they are safe within us and

we will do all we can to make you feel better.

As far as your anxiety and depression - remember that you are taking

care of it and that is the first best thing you can do for yourself

and your children. You are making wonderful decisions for yourself

and your children and you should be proud of yourself. You are

doing a fantastic job.

As far as Skyler is concerned. She's quite young yet and I'm not

sure she " totally " understands her outward appearance. My son Ian

who is 2 1/2 understands that he is a little different and he hears

me talk about his syndrome all the time - but, I think that because

of his age - the love he gets at home from his parents and sibling

(s) ( is in Chicago) the constant positive reinforcement about

how much we care and love him and that we " treat " him as any other

(time-outs for bad behavior, play-time in preschool, etc.)for his

age - he is getting all that he needs. I've had a couple of

children say - you're little - but, he just looks at them and

says " I'm not a baby - I'm a big boy " - because, that's what we tell

him. I don't have all the answers - but, at this point - I wouldn't

be concerned just yet about feeling the need to explain things to

her. I plan on gradually introducing his differences as they come

up and will prepare him for kindergarten - but, those things can

happen over time.

Getting time for yourself is very important. We just moved to a

state where we have no " friends " , family (well, we have a cousin 2

1/2 hours from here - but - it's not like a quick car ride and she's

always very busy) or " support " network like church as we have not

found one we like yet. We have only been here for 6 months. All I

can say is that this listserve has been very beneficial for me and I

ask and provide support whenever I have something " intelligent " to

say! LOL Honestly, I've tried to get " connected " with the neighbors

here and it has helped. When the paramedics came for the second

time last week - I called a neighbor! When I had to take Ian to the

hospital for his Cat Scan - I called a neighbor to pick up my other

son! I have to be honest, I've always been very " proud " - enough

that it hindered me because I wouldn't ask for help when I really

needed it. Well, I've changed that. I ask now because people (such

as myself) LOVE to help other people. It's human nature. If you

need someone to watch the kids for some quality time for yourself -

don't be afraid to ASK! All they can say is 'NO' and then look into

something else. Do you belong to a church? I'm not asking for

religious purposes - but, I know from experience that my church

(where we used to live) always has provided babysitting type of help

and still gives me support to this day with their prayers and

blessings. And, you know what - it costs money - and it's worth it -

but, I've stayed at hotels by myself when I REALLY needed the time

away and my husband handled things " just fine " . My dh also gives me

2-3 hours every weekend by myself - no questions asked - and that

helps too. Just don't go shopping! LOL My dh doesn't like that so

much! LOL

And number 3 - with dad. Try talking to him about WHY and WHAT his

thoughts are. Give him some actually time to talk and try not to

respond to him too quickly. When he's finished telling you his

feelings - try saying " thank you for telling me - let me think about

what you have said and get back to you " . I know this always helps

my dh and I because my dh feels like I'm really " listening " to him.

And you know what - sometimes he really has a good point and I may

have missed what he meant had I not really " listened " .

I hope you are doing better. My apologies for not saying " hello "

sooner. Hope I've offered some things to think about.

Take Care.

- H

>

> 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

>