Unsupportive Husband

[Guest guest]

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