Re: message for claire

[Guest guest]

Hi ,

Thank you for your E Mail such words of encouragement are greatly needed at the

moment i have been researching 's possible conditions on the net and i think

i have finally faced up to what is going to happen to him.

From the research i have done all of the conditions have the same effect just

some kill quicker than others. His body will just slowly shut itself down

starting with him going blind and deaf and continue to the point of him being a

vegetable and then he will be taken from me.

Part of me hopes its one of the quicker ones because I'm not sure i have the

strength to watch him slowly dying.

But the other half is selfish and hopes its the one that lets me cuddle and kiss

him for the longest time.

I just feel at the moment no matter how hard i fight for him its all futile in

the end because I'm going to lose no matter.

I just love him SO much and he's so beautiful and I've given him my heart and

soul and I'm scared he'll take them with him when he does go. What then?

I think I'm just running on empty emotionally at the moment we just get one

piece of bad news after the other. I keep bursting in to tears over the silliest

things!!!

is my life and i spend every ounce of strength i have fighting to keep him

well but he still keeps getting more and more sick and it's only gonna get

worse. I'm just tired of it all really.

Sorry to be so gloomy but i can't help myself at the moment.

I hope you are keeping strong and trying to enjoy life.

We've all gotta keep smiling!!!

Love and .

wrote:

Hello ,

From your email, I can imagine how very difficult things must be for

you at the moment, but please do not give up hope for little .

Please also don't feel guilty for your thoughts and feelings - we all

have guilty thoughts, even when our children are OK, so please don't

give yourself a hard time over it.

I know how it feels to wonder if you'll ever be happy again and it is

very difficult to think you'll ever find happiness in your future,

but try to take one day at a time, try very hard not to spend the

time you have with feeling sad.

Finally, WILL have a happy life because you are his mother and

you love him so very much. knows this when you hold him, cuddle

him and kiss him, and the only thing a child needs to make them happy

is their mother's love.

Lots of love and cuddles for both you and .

xxx

> Hi Carole,

> Its here don't know if you remember talking to me before i

have a five month boy called .

> I just read your E mail and something really struck with me.

> 's seizures have increased hugely recently to at least forty a

day and hes now having them in his sleep to so god knows how many

with the ones we don't see too.

> Despite being on the highest dose possible for his size of

three different meds.

> There has also been a marked change in that i cant quite put

my finger on he just seems very different in his manner.

> The seizures are changing too now he has ones that make him stop

breathing albeit a short period of time still v v scary!!!! He also

has facial twitches and limb twitches but also ones where he arches

his back and his whole body jerks.

> Also ones where he will throw his arms out to his side and look

absolutely terrified and scream this blood curdling scream and then

cry inconsolably.

> I am so desperate for him not to end up back in hospital although i

know its for the best.

> With the news we have had about his other condition being terminal

i sometimes think i should maybe just let the seizures take him and

end the misery for us all.

> and then i feel so guilty for feeling these things!!!

> I just wish to have a happy life while hes here and i don't

believe he can be whilst hes having all the seizures. He also has

very positional breathing difficulties which drive him bonkers to the

point where he actually shouts in frustration.

> I'm sorry for unloading all this on to you you've got more than

enough to worry about but i feel that and have alot of

the same problems.

> I wonder sometimes if i will ever be happy again and find it hard

to see any happiness in a future that seems so bleak. All I've got to

look forward to is dying!!!!

> Sorry for moaning!!!

> Give a big kiss from and Terri a cuddle from me!!

> and .

> Take care of yourself

>

>

>

>

[Guest guest]

Hi ,

I'm so sorry to hear the results of your research. It must be

devastating to read how things are going to go for , but can you

be sure this will happen? You use the words " possible conditions " .

Are you sure you're not scaring yourself? I don't mean to sound

doubtful as I'm sure you are fully aware of what is happening to

, but I know what it's like to read things on the net and

convince yourself that your child has it. We did this with Bradley

before he was diagnosed. My mum even convinced herself he had

something which he hasn't.

However things turn out, you MUST enjoy NOW - don't waste time

thinking about the future and when things are going to happen because

you will only beat yourself up for not enjoying when you had the

chance - I know it's difficult, but you must enjoy him as he is now,

one day at a time. And whatever happens, you WILL be able to deal

with it when it happens - I know at the moment you feel you won't,

but again, it is something you must try not to think about now, and

only deal with it when it happens.

And this may sound quite harsh, but is not your life, he is PART

of your life. This is something I have learnt. You can't put all

your energies into your children, however they are. You must develop

and nuture other areas of your life and other relationships because

when things do get tough it will be these other areas of your life

that you will turn to to help you through the bad times.

And don't apologise for being gloomy - but please try to rise above

this terrible time and be strong for and yourself.

Love and hugs

xxx

> > Hi Carole,

> > Its here don't know if you remember talking to me before i

> have a five month boy called .

> > I just read your E mail and something really struck with me.

> > 's seizures have increased hugely recently to at least forty

a

> day and hes now having them in his sleep to so god knows how many

> with the ones we don't see too.

> > Despite being on the highest dose possible for his size of

> three different meds.

> > There has also been a marked change in that i cant quite put

> my finger on he just seems very different in his manner.

> > The seizures are changing too now he has ones that make him stop

> breathing albeit a short period of time still v v scary!!!! He also

> has facial twitches and limb twitches but also ones where he arches

> his back and his whole body jerks.

> > Also ones where he will throw his arms out to his side and look

> absolutely terrified and scream this blood curdling scream and then

> cry inconsolably.

> > I am so desperate for him not to end up back in hospital although

i

> know its for the best.

> > With the news we have had about his other condition being

terminal

> i sometimes think i should maybe just let the seizures take him and

> end the misery for us all.

> > and then i feel so guilty for feeling these things!!!

> > I just wish to have a happy life while hes here and i don't

> believe he can be whilst hes having all the seizures. He also has

> very positional breathing difficulties which drive him bonkers to

the

> point where he actually shouts in frustration.

> > I'm sorry for unloading all this on to you you've got more than

> enough to worry about but i feel that and have alot of

> the same problems.

> > I wonder sometimes if i will ever be happy again and find it hard

> to see any happiness in a future that seems so bleak. All I've got

to

> look forward to is dying!!!!

> > Sorry for moaning!!!

> > Give a big kiss from and Terri a cuddle from me!!

> > and .

> > Take care of yourself

> >

> >

> >

> >

[Guest guest]

,

I have to second what writes about " enjoying NOW " . I had

a daughter, , who died when she was 16 days old. She was in

the NICU her whole life, and the whole time we knew she was most

likely going to die. We had good days and bad days, depending on how

she was behaving. However, for me it got to a point that I felt I had

to protect my heart and I stopped asking to hold her all the time and

I dreaded the visits. I thought that by not getting close I would

protect myself and it wouldn't hurt so much when she was gone. I now

know that this is not true, and my biggest regret is that I did not

allow myself to fully enjoy her. I wish that I had held her more,

cuddled her more, taken more pictures, etc. I think no matter what

you always feel that way, but you can do something about it now with

. No matter how hard it is for you, you have to love him so that

he enjoys his life and knows how much you loved him. When they are

gone there is no going back, only the memories you have inside you.

Try to make sure that you have enough to last a lifetime and have no

regrets.

That is just my feelings on the subject, based on personal

experience. Take it however you want, as I know each situation is

different. But try to enjoy each day you have together.

> > > Hi Carole,

> > > Its here don't know if you remember talking to me before

i

> > have a five month boy called .

> > > I just read your E mail and something really struck with me.

> > > 's seizures have increased hugely recently to at least

forty

> a

> > day and hes now having them in his sleep to so god knows how many

> > with the ones we don't see too.

> > > Despite being on the highest dose possible for his size of

> > three different meds.

> > > There has also been a marked change in that i cant quite

put

> > my finger on he just seems very different in his manner.

> > > The seizures are changing too now he has ones that make him

stop

> > breathing albeit a short period of time still v v scary!!!! He

also

> > has facial twitches and limb twitches but also ones where he

arches

> > his back and his whole body jerks.

> > > Also ones where he will throw his arms out to his side and look

> > absolutely terrified and scream this blood curdling scream and

then

> > cry inconsolably.

> > > I am so desperate for him not to end up back in hospital

although

> i

> > know its for the best.

> > > With the news we have had about his other condition being

> terminal

> > i sometimes think i should maybe just let the seizures take him

and

> > end the misery for us all.

> > > and then i feel so guilty for feeling these things!!!

> > > I just wish to have a happy life while hes here and i

don't

> > believe he can be whilst hes having all the seizures. He also has

> > very positional breathing difficulties which drive him bonkers to

> the

> > point where he actually shouts in frustration.

> > > I'm sorry for unloading all this on to you you've got more than

> > enough to worry about but i feel that and have alot

of

> > the same problems.

> > > I wonder sometimes if i will ever be happy again and find it

hard

> > to see any happiness in a future that seems so bleak. All I've

got

> to

> > look forward to is dying!!!!

> > > Sorry for moaning!!!

> > > Give a big kiss from and Terri a cuddle from me!!

> > > and .

> > > Take care of yourself

> > >

> > >

> > >

> > >