Re: Venting...mother-in-law doesn't get it

August 31, 2002

Hi ,

I had a some difficulty with my father. When we joined Magic, I made copies

of some of the information on RSS and mailed it to him and other relatives.

It worked pretty well. He still always asks about Annie with this tone of

concern, but as she gets older and he sees that she is doing great, he is

getting better. My dad lives out of town and only sees the kids a couple

times of year. Hopefully, with time, your mother-in-law will figure things

out. Good luck.

Kerry (Mom of Jack, 6, Charlie and Annie (RSS), 3 1/2, and Tommy, 1 1/2)

August 31, 2002

,

After 14 years, we still have difficulties with my husband's

parents. They treat Max like a china doll, something that is very

delicate and can be broken easily. Now, I know that Max has his

issues, but physically fragile he is not. It has gotten to the

point that we don't even tell them details about what is going on

with Max. It's not worth the effort. They mourn each little thing

and mope around. It's almost like they live for it. We just give

the basics when we feel like it and move on. Fortunately, Max has

not caught on yet. He is so egocentric that he is not aware of this

sutff yet, and probably won't ever be.

Jodi

August 31, 2002

Oh yes and strangers. We've had this discussion many times. You will never

change them. Sometimes they (usually the grandparents) don't want to accept

reality. That something " is wrong " . They just fool themselves. God I've

heard it all.

One thing that I did that was the best for me was I took my mom with me to

the Chicago convention. When she SAW the other kids she realized this was

" real " not some crazy idea I found on the internet and that it was common.

Since then, she has never said " oh he'll surprise you yet and shoot up " . Now

it's " you can only do the best you can do " . Much different. She even told me

that she was proud and in awe of me. Being a single mom and yet always going

to doctors and searching for something, anything to help Adam. She wishes

she had my strength, patience and knowledge to keep on going. It's nice to

finally have that support.

As far as the others go (including Adam's own father) I just ignore them.

You'll never change some people. Let your mother in law babble on and just

do a broken record of answers (eg. " he's doing fine " or " the doctors say we

are doing the right things for him " ) and eventually she'll get tired of

hearing your same response.

Good luck. It's a pain....I know.

Debby

Venting...mother-in-law doesn't get it

> Ever since we found out that has RSS my mother-in-law just

> doesn't seem to get it. Every single time we talk to her about

> she always asks " is he gaining weight? are his cheeks filling out

> yet? " And when we try to explain to her that yes he is gaining

> weight, but he will not gain as quickly as if he did not have RSS. It

> seems that the more we explain to her about RSS the less she gets

> that RSS is not a disease that can be cured and she almost always

> says that she's praying for a miracle.

>

> We try to emphasize to her that he is on track developmentally and is

> normal, but he has some issues that we need to monitor. Really in my

> opinion I feel that if your child is going to have a genetic syndrome

> this is probably one of the better ones to have. There are some

> pretty scary things that can happen genetically. I have a younger

> sister who was born with trisome 13 and she only lived 13 hours. Had

> she survived she probably wouldn't have lived more than 5 years and

> would have been severely mentally retarded, had severe hydrocephaly,

> the list goes on. So really RSS doesn't seem too scary at all.

>

> Anyhow it has gotten to the point that I don't enjoy talking to her

> about because it keeps going the same way.

>

> Oh well, had to get that off my chest.

>

> Has anyone else had similar difficulty with family members or others?

>

August 31, 2002

Hey !

I know exactly what you mean! My parents can't seem to get it that what is

" wrong " with , cannot be cured and isn't something he will outgrow!

is the happiest, most non-fussy 8 month old I know! He can occupy his

own time, imitate funny faces, imitate sounds, roll anywhere he wants to get,

and charm just about anyone! He doesn't hold up his own head yet, but the DRs

think that will come with some weight gain. My parents are very concerned with

his failure to gain weight and constantly pepper our conversations with " if only

you would... " statements! Like we haven't tried everything in the book with B!

The last time B was hospitalized, they wouldn't come to see him and the

statements went to the " if only you had... " variety. Like we don't feel bad

enough about everything! I've tried giving them all the RSS materials I can,

printing out posts from here, having the DRs talk to them, (that didn't help at

all!) etc.... and they still refuse to understand. I just quit relating any

concerns I have to them and focusing only on B's positive gains whenever we

talk. It did narrow down any support from family, but they weren't being helpful

anyway, so I guess I haven't lost much, huh? And I know in my heart that it's

not a question of how much they love B, they just cannot comes to terms with the

fact that one of their great-grandchildren is not " normal " . They want to " fix "

him.

Patience is a virtue, and I'm sure that with 4 kids (2 of whom have ADHD), a

very active, impish granddaughter, and 's health problems, this is what

God wants me to work on in this lifetime! I just keep letting him know that I'm

trying!

Pat (g-ma to B, RSS, 8 months, 8#2oz, 22.5 in )

Venting...mother-in-law doesn't get it

Ever since we found out that has RSS my mother-in-law just

doesn't seem to get it. Every single time we talk to her about

she always asks " is he gaining weight? are his cheeks filling out

yet? " And when we try to explain to her that yes he is gaining

weight, but he will not gain as quickly as if he did not have RSS. It

seems that the more we explain to her about RSS the less she gets

that RSS is not a disease that can be cured and she almost always

says that she's praying for a miracle.

We try to emphasize to her that he is on track developmentally and is

normal, but he has some issues that we need to monitor. Really in my

opinion I feel that if your child is going to have a genetic syndrome

this is probably one of the better ones to have. There are some

pretty scary things that can happen genetically. I have a younger

sister who was born with trisome 13 and she only lived 13 hours. Had

she survived she probably wouldn't have lived more than 5 years and

would have been severely mentally retarded, had severe hydrocephaly,

the list goes on. So really RSS doesn't seem too scary at all.

Anyhow it has gotten to the point that I don't enjoy talking to her

about because it keeps going the same way.

Oh well, had to get that off my chest.

Has anyone else had similar difficulty with family members or others?

August 31, 2002

hi julie,

my husband has two adopted children and one daughter that born with c.p, so

when our daughter was born evreybody was expecting for a healthy child.Mai

was diagnosed as rss after two hours and when everybody was happy -me and my

husband were in shock-donot know what to accept.it took us two dayd to

decide that nobody will know-including the parents-because we didnot want

people will fill pity for her or for her father-we thought that she need

true love!..now,after 8 months everybody knows she is small cause she is not

eating-but not the title " rss " .

dont know what will be in the future but right know it seems to be the right

decision.

tik

>

>Reply-To: RSS-Support

>To: RSS-Support

>Subject: Venting...mother-in-law doesn't get it

>Date: Sat, 31 Aug 2002 05:48:28 -0000

>

>Ever since we found out that has RSS my mother-in-law just

>doesn't seem to get it. Every single time we talk to her about

>she always asks " is he gaining weight? are his cheeks filling out

>yet? " And when we try to explain to her that yes he is gaining

>weight, but he will not gain as quickly as if he did not have RSS. It

>seems that the more we explain to her about RSS the less she gets

>that RSS is not a disease that can be cured and she almost always

>says that she's praying for a miracle.

>

>We try to emphasize to her that he is on track developmentally and is

>normal, but he has some issues that we need to monitor. Really in my

>opinion I feel that if your child is going to have a genetic syndrome

>this is probably one of the better ones to have. There are some

>pretty scary things that can happen genetically. I have a younger

>sister who was born with trisome 13 and she only lived 13 hours. Had

>she survived she probably wouldn't have lived more than 5 years and

>would have been severely mentally retarded, had severe hydrocephaly,

>the list goes on. So really RSS doesn't seem too scary at all.

>

>Anyhow it has gotten to the point that I don't enjoy talking to her

>about because it keeps going the same way.

>

>Oh well, had to get that off my chest.

>

>Has anyone else had similar difficulty with family members or others?

>

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August 31, 2002