Re: Re: Rasha's MRI results-Not good...Janay

[Guest guest]

Hi there, Janay.

I have not been able to check my email for some time

(I have 1629 more messages!!) and just opened this

one. How I wish I had some wonderful things to say...

As many of the other parents have already said, and I

wanted to second, you and your family have every right

to feel sad and disappointed for a while. I remember

when one of the NICU nurses (who also has a child, now

19, with special needs) said to me after receiving

more sad news about Vinny shortly after he was born,

" Are you okay? Oh... you are not okay. I can see you

have been crying. Go ahead and cry. You need to.

Then you'll do what you have been doing all along:

you'll adapt. You'll adapt because Vinny needs you to

and you have the strength to. "

I remember those words like it was yesterday and I can

still hear her voice and feel her hug. I hope you can

feel mine.

Love,

ina, mom to Luca (almost 4) and Vinny (2

tomorrow!)

--- jkhayes95 jkhayes95@...> wrote:

> ,

>

> I am going to check this out. What you are

> describing is exactly

> what I was thinking she needs. A kind of personal

> doorbell. She

> likes vibration. She has some adaptive toys we

> borrowed from Lekotek

> that have the vibrating touch button with one red

> light and she does

> the happy dance everytime she sees it and then tries

> to lick it...

>

> I bookmarked something from the House Ear Institute

> last night as I

> became bleary eyed. It was talking about an auditory

> brain stem

> implant for people with damaged nerves from

> tumors-as this seems to

> be the most common way to not have use of your

> auditory nerve. I'm

> not quite there yet as far as being ready to

> research that. Surgery

> scares me-especially when its " elective " .

>

> Thanks, everyone, for bearing with me while I try to

> shake my bad

> attitude!

>

> Janay

> Rasha's Mom (22 months old today!)

>

>

> > >

> > > Janay,

> > >

> > > I think I can understand some of the feelings

> you had when you

> saw

> > the MRI results. For us it seemed so 'unfair'

> that after all the

> > difficult medical experiences, there would be

> something so life-

> > affecting as communication to deal with, too.

> > >

> > > Some time after the identification of deafness

> in Kendra, a

> new

> > neighbor moved to our street. It turns out that

> he had become

> deaf

> > at about age 2 due to meningitis. While he had

> begun to speak

> prior

> > to the meningitis, it left him completely deaf.

> In fact, he even

> > recalls sitting in the hospital bed shortly

> after awakening from

> the

> > coma associated with the illness, and telling

> his mom that he

> didn't

> > understand why she wasn't using her voice when

> he could see her

> lips

> > moving. He could hear nothing.

> > >

> > > This friend, Ed, has led, and continues to

> lead a very full

> and

> > amazing life. In fact, he was the first deaf

> individual to earn

>

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