Re: Funny (and not so funny) old world

[Guest guest]

Florence,

So sorry to hear about your home...I'm glad you are so positive about everything

else though...

Hugs to you all,

Weir

Mom to Kennedy

Florence Njeru wrote:

It's been a strange weekend at the Njeru/ household. and I

spent a night at the hospital last night (just for gromets today). I met a

woman (parent) who I thought was pretty remarkable (child with variety of

needs, 3 other children etc). We got talking and she announced that she was

given courage by meeting me and she was so glad she had met me and she

thought I was so strong etc etc etc, and the fact that I was still smiling

made her realise that she can carry on. Glad to oblige but..........Well, I

was sooo embarassed and I had to tell her that I was thinking pretty similar

things of her too and that I too do have my moments of not being so

cheerful, coping etc. She made me feel such a hero (I don't do hero without

huge embarassment).

Surgery went well, recovered well from anaesthetic, Elly loved the

ward playroom (opportunist!); then we got home and we had been burgled!!!

Just what we needed. We didn't lose a great deal (our house is such a mess

I think the burglars thought someone else had beaten them to it!!!) but

hell, the inconvenience and broken window and door is a pain in the butt.

However, what the hell, it could have been worse (how, says Simon who lost

his carefully bagged change of several months and totalling around £400!!!).

No one got hurt, they didn't defile our home, our kids are well and

healthy, they didn't bother stealing anything apart from the money etc.

Life is too precious to dwell on this incident.

I have been a lurker on the listserve for a while and have had no time to

reply to anything but have read everything. To all those struggling with

big issues, best of luck. To the new and relatively new parents, it does

get easier (or we learn to make the most of the peaks and ride the troughs

without sinking too often). To all who have had recent meltdowns - glad to

be a member of your club!

On that note, still waiting for the police so better stop and join Simon in

the waiting game.

Best wishes all........

Flo

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information

will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may contact

CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

I fell asleep during our evening news and am probably still groggy. I'm so

sorry about your burglary but have to smile at your description of your

house. I wonder how many of us live in messes, etc. It is reassuring to

me to see your post (even with at Perkins, neatness is no longer a

prime goal), and I smile as I try to wake for dinner. Martha

I think that a lack of neatness and even cleanliness is a sign of relaxation!

But then I rationalize a great deal...Smile!

[Guest guest]

Flo,

Blessing and Hugs being sent your way. How scary to come home to a

broken into house.

Lynn

Funny (and not so funny) old world

>

> It's been a strange weekend at the Njeru/ household. and I

> spent a night at the hospital last night (just for gromets today). I met

> a

> woman (parent) who I thought was pretty remarkable (child with variety of

> needs, 3 other children etc). We got talking and she announced that she

> was

> given courage by meeting me and she was so glad she had met me and she

> thought I was so strong etc etc etc, and the fact that I was still smiling

> made her realise that she can carry on. Glad to oblige but..........Well,

> I

> was sooo embarassed and I had to tell her that I was thinking pretty

> similar

> things of her too and that I too do have my moments of not being so

> cheerful, coping etc. She made me feel such a hero (I don't do hero

> without

> huge embarassment).

>

> Surgery went well, recovered well from anaesthetic, Elly loved the

> ward playroom (opportunist!); then we got home and we had been burgled!!!

> Just what we needed. We didn't lose a great deal (our house is such a

> mess

> I think the burglars thought someone else had beaten them to it!!!) but

> hell, the inconvenience and broken window and door is a pain in the butt.

> However, what the hell, it could have been worse (how, says Simon who lost

> his carefully bagged change of several months and totalling around

> £400!!!).

> No one got hurt, they didn't defile our home, our kids are well and

> healthy, they didn't bother stealing anything apart from the money etc.

> Life is too precious to dwell on this incident.

>

> I have been a lurker on the listserve for a while and have had no time to

> reply to anything but have read everything. To all those struggling with

> big issues, best of luck. To the new and relatively new parents, it does

> get easier (or we learn to make the most of the peaks and ride the

> troughs

> without sinking too often). To all who have had recent meltdowns - glad

> to

> be a member of your club!

>

> On that note, still waiting for the police so better stop and join Simon

> in

> the waiting game.

>

> Best wishes all........

> Flo

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Crazy times over there!! I'm glad the surgery went well. And isn't it

interesting to find how others' perceptions of us differ from our

perceptions of ourselves? I'm sure you are both strong and remarkable

women -- and both entirely human with great humility :-)

So sorry about your home. I can't imagine how that would feel. Our

house is quite cluttered too. Now I have a good reason to keep it that

way (security reasons) rather than tidy up for the holidays when the

burglars are out in force :-D

Michele W

Aubrie's mom

>

>

[Guest guest]

Thanks all for your kind words about the burglary. The police could find no

fingerprints so culprits unlikely to be caught. Still feeling philosophical

though, probably because they didn't take much. I am asking myself whether

prior to all that has happened in the last 4 years ( being diagnosed

with CHARGE and all that it entails) I would have been so calm about the

whole thing, and I think not. We certainly learn to use our energies more

positively (I think).

We are still finding things to smile about in relation to the whole thing.

After she gave us lots of sympathies, when I noted to one of my friends that

the things that have gone missing have something to do with Simon (his

money, his glasses and sunglasses, my TENS machine that is mostly used by

him, possibly his passport), she did note that maybe either someone does not

like him very much or this is the Munchausens (sp?) of burglaries or the

equivalent. I am still laughing typing that out. Even he found it pretty

funny.

Hope everyone is having a reasonable weekend.

Flo

[Guest guest]

That is just a scarry story. I feel for you.

About the clutter though, good for you. Saved you tons!

Bonnie

[Guest guest]

Flo, so glad no one was hurt. hope all are well.

ps--I think you are an inspiration too!!

Funny (and not so funny) old world

>

> It's been a strange weekend at the Njeru/ household. and I

> spent a night at the hospital last night (just for gromets today). I met

a

> woman (parent) who I thought was pretty remarkable (child with variety of

> needs, 3 other children etc). We got talking and she announced that she

was

> given courage by meeting me and she was so glad she had met me and she

> thought I was so strong etc etc etc, and the fact that I was still smiling

> made her realise that she can carry on. Glad to oblige but..........Well,

I

> was sooo embarassed and I had to tell her that I was thinking pretty

similar

> things of her too and that I too do have my moments of not being so

> cheerful, coping etc. She made me feel such a hero (I don't do hero

without

> huge embarassment).

>

> Surgery went well, recovered well from anaesthetic, Elly loved the

> ward playroom (opportunist!); then we got home and we had been burgled!!!

> Just what we needed. We didn't lose a great deal (our house is such a

mess

> I think the burglars thought someone else had beaten them to it!!!) but

> hell, the inconvenience and broken window and door is a pain in the butt.

> However, what the hell, it could have been worse (how, says Simon who lost

> his carefully bagged change of several months and totalling around

£400!!!).

> No one got hurt, they didn't defile our home, our kids are well and

> healthy, they didn't bother stealing anything apart from the money etc.

> Life is too precious to dwell on this incident.

>

> I have been a lurker on the listserve for a while and have had no time to

> reply to anything but have read everything. To all those struggling with

> big issues, best of luck. To the new and relatively new parents, it does

> get easier (or we learn to make the most of the peaks and ride the

troughs

> without sinking too often). To all who have had recent meltdowns - glad

to

> be a member of your club!

>

> On that note, still waiting for the police so better stop and join Simon

in

> the waiting game.

>

> Best wishes all........

> Flo

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

I think a burgler would think someone beat them to it in our house too!!!

It's always such a mess. last week end I cleaned to rearrange and put up

the tree. the room was clean for maybe half a day---ah life with 3 kids!!

Re: Funny (and not so funny) old world

>

> I fell asleep during our evening news and am probably still groggy. I'm so

> sorry about your burglary but have to smile at your description of your

> house. I wonder how many of us live in messes, etc. It is reassuring to

> me to see your post (even with at Perkins, neatness is no longer a

> prime goal), and I smile as I try to wake for dinner. Martha

>

> I think that a lack of neatness and even cleanliness is a sign of

relaxation!

> But then I rationalize a great deal...Smile!

>

>

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

heeh i knwo someone who had a messy house and he came home one day and just

started makings omething to eat thought nothing of the mess or th tv not

being there and his mum came home and was like WHERE IS THE TV? lol

its good the surgery went well

Belinda

Funny (and not so funny) old world

>

> It's been a strange weekend at the Njeru/ household. and I

> spent a night at the hospital last night (just for gromets today). I met

> a

> woman (parent) who I thought was pretty remarkable (child with variety of

> needs, 3 other children etc). We got talking and she announced that she

> was

> given courage by meeting me and she was so glad she had met me and she

> thought I was so strong etc etc etc, and the fact that I was still smiling

> made her realise that she can carry on. Glad to oblige but..........Well,

> I

> was sooo embarassed and I had to tell her that I was thinking pretty

> similar

> things of her too and that I too do have my moments of not being so

> cheerful, coping etc. She made me feel such a hero (I don't do hero

> without

> huge embarassment).

>

> Surgery went well, recovered well from anaesthetic, Elly loved the

> ward playroom (opportunist!); then we got home and we had been burgled!!!

> Just what we needed. We didn't lose a great deal (our house is such a

> mess

> I think the burglars thought someone else had beaten them to it!!!) but

> hell, the inconvenience and broken window and door is a pain in the butt.

> However, what the hell, it could have been worse (how, says Simon who lost

> his carefully bagged change of several months and totalling around

> £400!!!).

> No one got hurt, they didn't defile our home, our kids are well and

> healthy, they didn't bother stealing anything apart from the money etc.

> Life is too precious to dwell on this incident.

>

> I have been a lurker on the listserve for a while and have had no time to

> reply to anything but have read everything. To all those struggling with

> big issues, best of luck. To the new and relatively new parents, it does

> get easier (or we learn to make the most of the peaks and ride the

> troughs

> without sinking too often). To all who have had recent meltdowns - glad

> to

> be a member of your club!

>

> On that note, still waiting for the police so better stop and join Simon

> in

> the waiting game.

>

> Best wishes all........

> Flo

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

hmm my last eamail im sorry if it sounded a bit insensitive, i guess your

sense o safety can change when that happens, even if u dont think it was a

" bad burgalary "

" hugs "

Belinda

Re: Funny (and not so funny) old world

>

> Thanks all for your kind words about the burglary. The police could find

> no

> fingerprints so culprits unlikely to be caught. Still feeling

> philosophical

> though, probably because they didn't take much. I am asking myself

> whether

> prior to all that has happened in the last 4 years ( being

> diagnosed

> with CHARGE and all that it entails) I would have been so calm about the

> whole thing, and I think not. We certainly learn to use our energies more

> positively (I think).

>

> We are still finding things to smile about in relation to the whole thing.

> After she gave us lots of sympathies, when I noted to one of my friends

> that

> the things that have gone missing have something to do with Simon (his

> money, his glasses and sunglasses, my TENS machine that is mostly used by

> him, possibly his passport), she did note that maybe either someone does

> not

> like him very much or this is the Munchausens (sp?) of burglaries or the

> equivalent. I am still laughing typing that out. Even he found it pretty

> funny.

>

> Hope everyone is having a reasonable weekend.

> Flo

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Hi Belinda,

No, it was not insensitive at all. Some things in life are just not worth

the negative energy so it's good to laugh when we can. Material things can

be replaced. Now I was not saying that when I realised my work mobile phone

was taken and bureaucracy drove me mad when I was trying to cancel it! It's

just the hassle that is a pain but you are right about the sense of safety.

Suddenly, the hedge is gone, burglar alarm to be installed, doors to be

changed etc etc. Having lived here for 12 years, all of a sudden security

improvement is a priority.

Still, next time I hope they at least tidy up our mess and make us a meal

while they help themselves to our property!

Flo

>

>Reply-To: CHARGE

>To: <CHARGE >

>Subject: Re: Funny (and not so funny) old world

>Date: Thu, 9 Dec 2004 12:05:31 +1100

>

>hmm my last eamail im sorry if it sounded a bit insensitive, i guess your

>sense o safety can change when that happens, even if u dont think it was a

> " bad burgalary "

> " hugs "

>Belinda

>-----

[Guest guest]

you are too funny!!

maria

Re: Funny (and not so funny) old world

> >Date: Thu, 9 Dec 2004 12:05:31 +1100

> >

> >hmm my last eamail im sorry if it sounded a bit insensitive, i guess your

> >sense o safety can change when that happens, even if u dont think it was

a

> > " bad burgalary "

> > " hugs "

> >Belinda

> >-----

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Laughing is somethin i do often when something bad happens, i cant help it,

i guess its easier then feeling sad, iremember once something happened that

is not a laughing matter, and i was telling my friend and cracking up

laughing wile i was telling him coz i just thought itwas so funny, he didnt

believe me coz of how i was acting hehehe

Belinda

Re: Funny (and not so funny) old world

>>Date: Thu, 9 Dec 2004 12:05:31 +1100

>>

>>hmm my last eamail im sorry if it sounded a bit insensitive, i guess your

>>sense o safety can change when that happens, even if u dont think it was a

>> " bad burgalary "

>> " hugs "

>>Belinda

>>-----

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Belinda,

Laughter is a human response to something that is surprising, often that is

a punch line, but other times it is more serious, but our body can still

respond with the laughter response. You're not weird.

I have had a lot of stress this last year and when I tell my best friend, we

often laugh over the escapades of my teenager, not because they are funny,

but because humor helps us cope with the situation, it kind of releases

stresses hold on you. Puts it in perspective so to speak.

Kim

>

> Laughing is somethin i do often when something bad happens, i cant help it,

> i guess its easier then feeling sad, iremember once something happened that

> is not a laughing matter, and i was telling my friend and cracking up

> laughing wile i was telling him coz i just thought itwas so funny, he didnt

> believe me coz of how i was acting hehehe

> Belinda

>

>

>

> Re: Funny (and not so funny) old world

>>> Date: Thu, 9 Dec 2004 12:05:31 +1100

>>>

>>> hmm my last eamail im sorry if it sounded a bit insensitive, i guess your

>>> sense o safety can change when that happens, even if u dont think it was a

>>> " bad burgalary "

>>> " hugs "

>>> Belinda

>>> -----

>>

>>

>>

>>

>>

>> Membership of this email support groups does not constitute membership in

>> the CHARGE Syndrome Foundation.

>> For information about the CHARGE Syndrome

>> Foundation or to become a member (and get the newsletter)

>> please contact marion@... or visit

>> the CHARGE Syndrome Foundation web page

>> at http://www.chargesyndrome.org

>> 7th International

>> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

>> Information will be available at our website

>> www.chargesyndrome.org or by calling 1-. In Canada, you may

>> contact CHARGE Syndrome Canada at 1- (families), visit

>> www.chargesyndrome.ca, or email info@.... Thank you!

>>

>>

[Guest guest]

my doctor thought i was crazy cause i laughed when he told me i had to

have another surgery on my arm -- he said i was taking the news

incredibly well -- i couldn't stop laughing -- if i wouldn't have

laughed i'd have cried and then i'd have just had a headache to go

with my bad news!!!

so i say laugh it up!!!

cole

[Guest guest]

Hi Belinda

I have only just caught up on 10 days worth of CHARGE emails and in the

context of your latest email, yes Flo and I found the following story told

to me by a friend on hearing about the burglary exceedingly funny.

Apparently one of her friends had been burgled and the police were consoling

her over the appalling mess the burglars had left her bedroom in. She was

too embarassed to tell them that the burglars hadn't actually touched her

bedroom.

I was thinking about laughter also in relation to the sad news about your

friend. I am very sorry to hear this and can sympathise wholly with how you

may fell, having lost a number of friends and acquaintances over the year.

It has got worse each time it happens and I try to deal with the event

positively by thinking of all the times I had fun with them (and also have a

drink in memory of them!).

Regards

Simon

>

>Reply-To: CHARGE

>To: <CHARGE >

>Subject: Re: Funny (and not so funny) old world

>Date: Fri, 10 Dec 2004 08:54:00 +1100

>

>Laughing is somethin i do often when something bad happens, i cant help it,

>i guess its easier then feeling sad, iremember once something happened that

>is not a laughing matter, and i was telling my friend and cracking up

>laughing wile i was telling him coz i just thought itwas so funny, he didnt

>believe me coz of how i was acting hehehe

>Belinda

>

>

>

> Re: Funny (and not so funny) old world

> >>Date: Thu, 9 Dec 2004 12:05:31 +1100

> >>

> >>hmm my last eamail im sorry if it sounded a bit insensitive, i guess

>your

> >>sense o safety can change when that happens, even if u dont think it was

>a

> >> " bad burgalary "

> >> " hugs "

> >>Belinda

> >>-----

> >

> >

> >

> >

> >

> > Membership of this email support groups does not constitute membership

>in

> > the CHARGE Syndrome Foundation.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter)

> > please contact marion@... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> > 7th International

> > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> > Information will be available at our website

> > www.chargesyndrome.org or by calling 1-. In Canada, you may

> > contact CHARGE Syndrome Canada at 1- (families), visit

> > www.chargesyndrome.ca, or email info@.... Thank you!

> >

> >