Re: Unsupportive Husband-Thanks for the replies!

[Guest guest]

Thank you EVERYONE who replied! It's so true that I need to have

deaf ears and just do what I am doing and everything else will come,

it is just hard. It's nice to know I am not the only one going

through this and it is actually pretty common and I feel for everyone

else going through or having gone through something like this. I

have taken my husband to a couple of appointments hoping realization

would kick in, but he just sat there silent (unusual in a doctor

setting) and left saying nothing is wrong. Maybe he is a silent

worrier, I don't know. I will continue doing everything I am

because that is what is best for Autumn and it is what is necessary.

Thank you so much for all your suppportand for sharing your own

stories!

mom to Autumn 9 mos and 2 boys

>

> Hi everyone. I just need some advice on how to handle my husband.

> He has not been supportive of the diagnosis of my 9 month old

> daughter Autumn with RSS. He thinks she is " just small " (24 1/2

> inches 12lbs 15 oz) and does not seem to realize how important it

is

> to do what I do for her. He basically just sits back as I run

ragged

> from doctor to doctor, keep food diaries, cry over how she just

> doesn't eat enough, wake up throughout the night and try to sneak

in

> some pediasure, deal with all the docs giving me the same advice

over

> and over(to get her to eat more) and trying to get them to

understand

> it's not working, trying to get her prealbumin level back

up...etc.

> He says he is not in denial, he just thinks everything is just

fine,

> and it is not. I feel like I am by myself with this and regardless

> of what I tell him or explain to him. It doesnt' seem to matter to

> him what a group of geneticists at Children's Hospital says, and I

> just don't know what to say anymore. Has anyone else dealt with

> this? It has been 2 months that we first heard the words

> Silver Syndrome and he still feels the same. I try to tell him

that

> denial doesn't change the reality in front of him, but it just

> doesn't seem to matter. I have been concerned with her since 2

months

> before I had her when she stopped growing up until know, and I am

> constantly told I need to quit worrying and everything is fine. I

am

> so frustrated. Also, does any one else get family members or

friends

> making comments like " so and so was small and she doesn't have

RSS "

> or " I don't see the low set ears or downturned mouth so why do they

> think she has it? " or " It's funny,I don't see all the features of

RSS

> on her, hmmm " (from the ones playing doctor from what they read on

> the internet). I have just had enough and I just don't know what

to

> say to anyone anymore! They are curious as to why she is so small

adn

> I tell them, and then later on that's the stuff I hear. Is it

just

> me or is anyone else going through it and what do you think I

should

> do to handle this, because I am at my wits end!

>

>

> Mom to Autumn 9 mos and 2 boys