Re: Georgia-May

[Guest guest]

Leeanne

Screw what other people will think. Make sure you let her feel as normal as

possible, don't let her get that sick kid mentality, unless of course she is.

It's worse when you don't explain it to people, than if you don't because then

they jump to their own conclusions anyways. She is a gorgeous blessing, rss or

not. = ) I'm 4'9 and 22 years old and by the way I've never worn highheels

unless i was going to a wedding. Being short is not as much of a handicap as

people seem to enjoy thinking it is. Your daughter will live a happy normal life

as long as you're there for her. = ) good luck

*leah*

clarkleeanne wrote:Hi - have just had a browse thru the

photos and having a little weep -

kids just like my Georgia - May!!!

Our little girl is 9 years old and we got the RSS " label " for her 6

months ago -and ashamed to say I have had my head buried in the sand

ever since - know I sound pathetic but am really worried that peoples

attitudes to Georgia- May will change if I tell them she has a

syndrome (at the moment she is just a petite little girl who is " a

bit

slow " ) - and am finding it really hard to tell her that she is little

because of RSS -for some stupid reason I feel I will change the

course

of her life if I say it out loud.She is about 117cm tall ,mentally at

a 6 year old level and has learning difficulties - is a bright little

button with a mind of her own (which makes her hard work at times!)Is

there anyone out there who has an older /grown up child or who has

RSS

themselves who has been thru this? - what is the best approach to

take?? How do I help my girl - am getting anxious for her as

the " awkward " years approach .

Somebody please tell me that a pair of really high heels will solve

all her problems!! Lee-Anne

---------------------------------

[Guest guest]

Oh, I wish you could bring Georgia May to the MAGIC convention in

July. My 9-year-old RSS daughter will be there -- along with about

120 other RSS/SGA families (and from estimates so far, I know of

about 10 other 8-10 year olds coming). I would love for you to see

the range of RSS 9-year-old little girls; it would definitely make

you feel better; and Georgia May would find out that she looks like

a bunch of other kids too!

Regardless of the convention, MAGIC will have tons of medical and

practical information for you. The families on the listserve will

give you emotional support. You are now part of a family here.

We're all here for you!

Salem (, age 9 yrs 4 months)

> Hi - have just had a browse thru the photos and having a little

weep -

> kids just like my Georgia - May!!!

> Our little girl is 9 years old and we got the RSS " label " for

her 6

> months ago -and ashamed to say I have had my head buried in the

sand

> ever since - know I sound pathetic but am really worried that

peoples

> attitudes to Georgia- May will change if I tell them she has a

> syndrome (at the moment she is just a petite little girl who is " a

> bit

> slow " ) - and am finding it really hard to tell her that she is

little

> because of RSS -for some stupid reason I feel I will change the

> course

> of her life if I say it out loud.She is about 117cm tall ,mentally

at

> a 6 year old level and has learning difficulties - is a bright

little

> button with a mind of her own (which makes her hard work at times!)

Is

> there anyone out there who has an older /grown up child or who has

> RSS

> themselves who has been thru this? - what is the best approach to

> take?? How do I help my girl - am getting anxious for her as

> the " awkward " years approach .

> Somebody please tell me that a pair of really high heels will

solve

> all her problems!! Lee-Anne

[Guest guest]

Hi Le-Anne,

I read over your message and I have a few thoughts. Sometimes my wife

says too few but that is many other stories.

I can undersatnd your reluctance to tell your daughter she has RSS.

After all she is doing fine, so why change anything. However, there

are a couple of things to consider. Let's say you never tell her she

has RSS but she finds out when she is 20 and she also finds out she

could have had growth hormone and been taller. How will she react?

Will she say that's OK or will she be angry that she wasn't informed

and not allowed to make a decision regarding treatment? Or what if

she finds out when she is say 16 and nearing the end of puberty, how

will she feel then?

Also, when she is an adult and has to inform a doctor of her medical

history, she won't be able to provide accurate medical information if

she doesn't know.

The point I am trying to make is, at some point you must tell her and

explain what her options are -- no treatment, growth hormone, growth

hormone and appetite stimlant, and growth hormone, appetitte

stimulant and other medication to delay puberty.

I know this is a tough thing to consider. It is something we have all

been through -- do we tell our child and if we do when and how. My

wife and I have taken the approach that our son should know he has

RSS and that RSS is just part of who he is and it is no big deal. Our

son understands it will not keep him from doing the things he loves,

swimming, soccer, baseball, light saber fights with Darth Vader etc.

Of course we have had to move him along at a slower pace than other

kids because he was not physically ready to compete with them.

Last, there is no need to go and tell all her friends and relatives.

It can just be somthing between you and her. However, again I would

not recommend this. Keeping secrets can lead to other complications.

This just my opinion. Often I am wrong but I hope I have given you

some meaningful advice. Please feel free to ask us anything. It does

not have to be related to RSS.

I hope this helps.

Ken M

> Hi - have just had a browse thru the photos and having a little

weep -

> kids just like my Georgia - May!!!

> Our little girl is 9 years old and we got the RSS " label " for her

6

> months ago -and ashamed to say I have had my head buried in the

sand

> ever since - know I sound pathetic but am really worried that

peoples

> attitudes to Georgia- May will change if I tell them she has a

> syndrome (at the moment she is just a petite little girl who is " a

> bit

> slow " ) - and am finding it really hard to tell her that she is

little

> because of RSS -for some stupid reason I feel I will change the

> course

> of her life if I say it out loud.She is about 117cm tall ,mentally

at

> a 6 year old level and has learning difficulties - is a bright

little

> button with a mind of her own (which makes her hard work at times!)

Is

> there anyone out there who has an older /grown up child or who has

> RSS

> themselves who has been thru this? - what is the best approach to

> take?? How do I help my girl - am getting anxious for her as

> the " awkward " years approach .

> Somebody please tell me that a pair of really high heels will

solve

> all her problems!! Lee-Anne

[Guest guest]

Hi Anne,

I'm sorry if my reply seemed a little harsh, I was only trying to help. My mom

always had me think I was normal and I believe that was the only thing to save

me. I'm so happy for about your daughter's milestone = ) that's awesome, I bet

she'll really enjoy feeling so independent = ) *hugs*

*leah*

Com wrote:

Thanks for the replies - Leah, and Ken - you are so right Leah -

People are jumping to thier own conclusions bout Georgia -May anyway and she is

a blessing (Like your attitude - I really do need to get over myself!) Would

love to get over to the convention one day - if GM shows an

interest-would it be alright to compare notes bout our girls??Thanks Ken for the

" Vent "

Milestone passed today! -Georgia - May can now ride her bike without training

wheels - age 9yrs1 month - wahoo!!!

(also 5 year old brother has just over taken her in the hieght stakes - much to

his delight and her disgust lol) Lee-Anne (mum to - Georgia-May 9 yrs rss and

Buster 5 yrs non rss)

Re: Georgia-May

Leeanne

Screw what other people will think. Make sure you let her feel as normal as

possible, don't let her get that sick kid mentality, unless of course she is.

It's worse when you don't explain it to people, than if you don't because then

they jump to their own conclusions anyways. She is a gorgeous blessing, rss or

not. = ) I'm 4'9 and 22 years old and by the way I've never worn highheels

unless i was going to a wedding. Being short is not as much of a handicap as

people seem to enjoy thinking it is. Your daughter will live a happy normal life

as long as you're there for her. = ) good luck

*leah*

clarkleeanne wrote:Hi - have just had a browse thru the

photos and having a little weep -

kids just like my Georgia - May!!!

Our little girl is 9 years old and we got the RSS " label " for her 6

months ago -and ashamed to say I have had my head buried in the sand

ever since - know I sound pathetic but am really worried that peoples

attitudes to Georgia- May will change if I tell them she has a

syndrome (at the moment she is just a petite little girl who is " a

bit

slow " ) - and am finding it really hard to tell her that she is little

because of RSS -for some stupid reason I feel I will change the

course

of her life if I say it out loud.She is about 117cm tall ,mentally at

a 6 year old level and has learning difficulties - is a bright little

button with a mind of her own (which makes her hard work at times!)Is

there anyone out there who has an older /grown up child or who has

RSS

themselves who has been thru this? - what is the best approach to

take?? How do I help my girl - am getting anxious for her as

the " awkward " years approach .

Somebody please tell me that a pair of really high heels will solve

all her problems!! Lee-Anne

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