Re: How do you keep your mouth shut?

[Guest guest]

Great point Hannah. I know when Leigha was only one month old I got

very defensive when a stanger would remark on her head...hey she was

my baby and deep down I knew something was up but didn't like

knowing others were staring. Maybe had some of these strangers

said " Hey I know what it might be.. " instead of " My her head's a

little flat arent you worried? " It would have been more helpful in

the long run. A lot of these moms might not react well because deep

down they probably are worrying about things and trying to dismiss

it as nothing..believe me the worse thing in the world is to think

something big could be wrong. This is probably the reason why the

parenting magazines and all aren't spreading a lot of awareness(its

all about avoiding law suits and not being liable in the medical

field and keeping parents happy so they don't overreact to things

that are simple.) But after the initial shock the info that is

given tends to set in. I looked online for lots of things way

before Leigha was diagnosed. When I finally found bicoronal cranio

I turned the computer off that first night and went to bed telling

myself nothing was wrong and the specialist would tell me it was no

big deal although the picture of the baby looked just like my

daughter. The morning we saw the craniofacial surgeon I still kept

thinking " This is stupid, the peditricians are right its a waste of

time. " Deep down I knew that we were not going to hear what we

wanted that morning but it still hurt to hear " She has to have major

surgery and I want it done in less than a month. " Surgery-helmeting

cranio/plagio...ALL this is no fun our kids are supposed to be

perfect and no one prepares you for even the littlist stuff (I still

hate the ordeals of colds and sickies) BUT once you start to find

answers and find support even if it takes a week or a month..maybe

longer...these parents you talk to are eventually going to

think " Okay what if.. " and at least you gave them a starting point.

You might see them pop online OR never hear from them again but

someday I am sure you will get thanks(even if it waits until you

move on from this life.) Leigha's web page has had over 7000 hits

and I havn't heard from 7000 people but I feel good knowing its one

more piece of info and one more way to find tons of support.

Besides, sharing our stories just gives us proud parents one more

way to brag on these kiddos =).

{{HUGS}}

Mel

>

> Hi Christy

>

> I just wanted to add that just because someone doens't seem

> immediately interested or receptive doesn't mean they won't hear

> what you have said. I once told a mum at playgroup about Lucia and

> she said her little boy had exactly that (which he did) but she

was

> very dismissive of what I told her (I didn't actually talk about

> him, just about Lucia, repositioning and websites). She even told

me

> she wasn't worried as he was a boy. I felt completely stupid and

> embarassed to have mentioned it. However, it must have hit home,

as

> I didn't see her for a few weeks (by which time I had convinced

> myself she had actually left the playgroup after I insulted her

> son), but she came in and told me she had been in touch with Dr

> Blecher, my specialist. In the end she decided with him not to

band

> as it was moderate, and she repoed him very successfully from

about

> four and a half months onwards. The last I saw of him, his plagio

> was almost unnoticeable- the repo worked great.

>

> So- best to just plough on, put the info out there, and don't look

> for thanks- most people would be defensive or upset hearing their

> child has a problem. Someone told my friend that her six week old

> baby had a genetic disorder at a barbeque. Now in the end she was

> glad- she found out about it further and in the main it is

> treatable. But she didn't thank them at the time! We are all

> precious about our kids- you are doing the right thing by sharing

> your story and pointing out to people that there is help out there.

>

> Hannah (mum to Lucia, London, UK)

> Cranio grad

>