surgery

[Guest guest]

Casey,

Thank you Casey. I don't vent very much but I almost feel like I'm losing my

mind. I can't stop crying. What is wrong with me? I need to be strong. I

don't like feeling like this. I go thru this type of feeling about once a

month (and it's not related to PMS). I do work out every morning except for

when I have these " break-downs " . I just can't do anything. It takes

everything I have just to drive to appointments. This state of mind will

last for about 2-3 days then I'm back to normal. Wonder what causes these

episodes I have???????? I've been prescribed Zoloft but that doesn't always

help, plus I hate the idea of having to take a pill to feel good.

Anyway, enough is enough. Sorry for all the complaining. Even though it's

rough and tough at times--I don't know what I would do without all the

running around we do. I tell the doctors and therapist that they ARE my

friends and family.

What kind of surgeries is your daughter going to have? I hope this isn't too

personal, but I want to ask you since your daughter is 10--how has she

developed? Is she still experiencing delays? Any other info is so

appreciated. I like hearing stories of other chargers. I find them all so

fascinating and God's greatest gifts.

One more thing--I've never been to a conference. Will you be going to the

conference in Cleveland? I'm really looking forward to it. I'm going to do

everything I can to be there with .

God bless you and your family.

Thanks so much, Lynda

mom to CHARGEr, --the love of my life along with husband Dean

[Guest guest]

Lynda,

Oh do I remember those days.... I don't think I got over three hrs

sleep at a time for the first three years.. Once when they finally

admitted Aari to the hosp I figured out that I had been up for over 76

hrs straight

A couple things that worked for me.. If you can afford it.. try hiring a

local high schooler to come in and do things like the laundry (I was

lucky in that my daughter was 13 when Aari was born I paid her to

do stuff like that) Take a break when you can.. ya know those

dishes aren't going anywhere LOL One thing that helped me gain

a little equilibrium was once a week if I could manage it... a bubble

bath, a glass of wine and a good romance novel.. which with Aari

and two other kids was hard to manage but it kinda centered me so

that I dealt with all the stuff a bit better.. it got so that the kids and my

hubby would hand me a book, a glass of wine and start the bath for

me...LOL said I was easier to live with afterwards..

My thoughts are with you and your husband.. ya know venting here

is a good way to handle all that's going on.. who else but us on this

list know what it's like.. and something else.. sometimes unless it's

an emergency you just need to take a break from all the docs and

therapies... we did that this summer.. but for a couple dentist appt

we took the summer off.. no school, no surgeries and it was great..

I feel like I'm able to start it all over again (Aari is looking at at least

two more surgeries in the next few months)

I hope that this helps some...

Casey

Mom to Dawn, 23 HH, Ken 13, ADHD,LD, , 10 CHARGE

Cobb CA

[Guest guest]

Lynda,

Oh do I remember those days.... I don't think I got over three hrs

sleep at a time for the first three years.. Once when they finally

admitted Aari to the hosp I figured out that I had been up for over 76

hrs straight

A couple things that worked for me.. If you can afford it.. try hiring a

local high schooler to come in and do things like the laundry (I was

lucky in that my daughter was 13 when Aari was born I paid her to

do stuff like that) Take a break when you can.. ya know those

dishes aren't going anywhere LOL One thing that helped me gain

a little equilibrium was once a week if I could manage it... a bubble

bath, a glass of wine and a good romance novel.. which with Aari

and two other kids was hard to manage but it kinda centered me so

that I dealt with all the stuff a bit better.. it got so that the kids and my

hubby would hand me a book, a glass of wine and start the bath for

me...LOL said I was easier to live with afterwards..

My thoughts are with you and your husband.. ya know venting here

is a good way to handle all that's going on.. who else but us on this

list know what it's like.. and something else.. sometimes unless it's

an emergency you just need to take a break from all the docs and

therapies... we did that this summer.. but for a couple dentist appt

we took the summer off.. no school, no surgeries and it was great..

I feel like I'm able to start it all over again (Aari is looking at at least

two more surgeries in the next few months)

I hope that this helps some...

Casey

Mom to Dawn, 23 HH, Ken 13, ADHD,LD, , 10 CHARGE

Cobb CA

[Guest guest]

Lynda,

Oh do I remember those days.... I don't think I got over three hrs

sleep at a time for the first three years.. Once when they finally

admitted Aari to the hosp I figured out that I had been up for over 76

hrs straight

A couple things that worked for me.. If you can afford it.. try hiring a

local high schooler to come in and do things like the laundry (I was

lucky in that my daughter was 13 when Aari was born I paid her to

do stuff like that) Take a break when you can.. ya know those

dishes aren't going anywhere LOL One thing that helped me gain

a little equilibrium was once a week if I could manage it... a bubble

bath, a glass of wine and a good romance novel.. which with Aari

and two other kids was hard to manage but it kinda centered me so

that I dealt with all the stuff a bit better.. it got so that the kids and my

hubby would hand me a book, a glass of wine and start the bath for

me...LOL said I was easier to live with afterwards..

My thoughts are with you and your husband.. ya know venting here

is a good way to handle all that's going on.. who else but us on this

list know what it's like.. and something else.. sometimes unless it's

an emergency you just need to take a break from all the docs and

therapies... we did that this summer.. but for a couple dentist appt

we took the summer off.. no school, no surgeries and it was great..

I feel like I'm able to start it all over again (Aari is looking at at least

two more surgeries in the next few months)

I hope that this helps some...

Casey

Mom to Dawn, 23 HH, Ken 13, ADHD,LD, , 10 CHARGE

Cobb CA

[Guest guest]

Lynda,

Like says it does get better.. even after 10 years I go through

the " why us? " thing.

Aari's surgeries coming up one to place a palate expander in to

widen his palate for the bone graft surgery. The bone graft is going

to be the big one.. He'll be on a liquid diet for weeks. soft foods for

a while after. He's gonna hate it because that boy does love to eat.

As far as the conference in Cleveland.. I'm planning on going.. and

you will love it.. Great info, get to meet people that have gone

through it .. get to see what is going on with all the kiddos.. meet old

friends and make new ones..

BTW you do have friends and family... right here on this list.. we all

concider ourselves family and have for the last seven years this list

has been here.

Geez, I can't believe I started this list almost 7 years ago.. went from

5 or 6 to over 450 now..

You take care,

Casey

Mom to Dawn, 23 HH, Ken 13, ADHD,LD, , 10 CHARGE

Cobb CA

[Guest guest]

-

I'm chiming in to confirm what the others have said. Things really will get

better. We all were overwhelmed in the first year or 2. We have all felt the

way you and your husband are feeling. Like Casey said, we are family here and

help each other through those times. I was fortunate enough to have a close

circle of friends in town who supported me through the tough beginning. If I'd

been in a new town like you are, it would have been much much harder. Even with

friends here, I needed this list because it was the only group of people who

really " got it " . My friends and family cared immensely, but they just didn't

know what my life and my feelings were like.

I also took a summer off from therapies etc. In the first year, my whole life

was therapies and Aubrie's daily care. She was born in Nov and it was the

summer before she turned 3 that I took off. We didn't schedule any therapies

and had minimal doctor appts (if any). I figured that we could meet all of her

therapy goals and more by having a normal active summer. As it turned out, it

was a wonderful blessing. Aubrie thrived and our family felt " normal " . This

summer, I didn't have to plan to take off -- it just happened naturally. She

had summer school, but no other therapies. I just happened to avoid making any

doctor appt and no illnesses came up requiring them. Now we're a bit behind on

some checkups she needs -- but we've come so far that they don't even seem

critical.

At your stage in the game, my biggest hope was that Aubrie --by kindergarten

--would appear to eat normal during the day but still have tube feedings at

home; would walk and not crawl into the classroom; and would sign fluently. As

it is -- she is in her last year of preschool before kindgergarten -- she is a

totally oral eater; she runs and jumps and manages the playground equipment with

relative mastery; she is beginning to speak clearly enough for her classmates to

understand her; and she is even beginning to read!!!!!!! I was so afraid to

hope for too much and she has far exceeded my wildest dreams!

I hope that will improve in this next year enough for you to begin to feel

relief from the stress. It may help you to know that I spent many (maybe even

most) of her early therapy sessions in tears. The therapists were my

counselors, friends, and supporters. Thank goodness we were blessed with some

angels because they really got me through tough times. I think their therapy

did me as much or more good than it did Aubrie :-) I even cried on the massage

therapist's table -- I got a gift certificate from my husband for a year's worth

and had respite care so that I could do it.

Having an older son helped keep us from going too insane. We had to have a

Christmas tree that first year even though Aubrie spent it in the hospital. We

had to do fun things with him even when we didn't feel like it. We had to get

on with as normal a life as possible for his sake. We also found respite care

that allowed me to take naps here and there and allowed my husband and I to go

on dates. If you can find a source for respite care -- use it! I remember once

when Aubrie was very little -- I was so tired that I literally could not get

through the day. I called every friend but they all were working or whatever.

Finally, through our small town grapevine, I was put in contact with an older

lady I had never met before who was more than willing to come sit with my sick

baby while I slept upstairs. I could never have made it through that day

without her.

Oh -- and one night in the first weeks when we were on a 2-hr feeding schedule

-- I woke up to find myself sleeping with a soggy diaper, Aubrie didn't get her

heart meds, and she didn't get her feeding. Apparently, I'd changed her in my

sleep, threw the diaper in the bed, and curled back up to sleep. That was when

I knew we couldn't keep up the pace.

Try to keep your chin up. Remember that you can only do so much. Your best

will be good enough for . There aren't enough hours in the day to do every

single thing that every therapist " suggests " that you do. You will have to

prioritize and pick and choose what you can really get done. I think we all go

through periods of focusing on one critical issue at a time while leaving the

rest on the back burner til later. Our kids have so much going on that it's

nearly impossible to handle it all at once.

Pace yourself. Allow yourself to be a bit selfish occassionally so you can have

a moment of peace or whatever you need to rejuvinate. And try to find an

opportunity for you and your husband to have a date. I know it's all easier

said than done, but you will get through this. Really, you will. Hang in there

and share your frustrations with us whenever you need to. That's what we are

here for!

Oh, and you will love the conference!!! I didn't realize how important it would

be for me. The first night, we went to the welcome reception and met all of the

families. There was a huge ballroom full of people affected by CHARGE --

professionals, parents, siblings, and CHARGERs. When we went back up to our

room, I cried-- in relief, I think. It was so amazing to see all of these

wonderful competent families who were living with CHARGE -- really living -- not

just getting by or suffering through or whatever. It was indescribable. Then

when you go to the sessions and hear the professionals speak who are working so

hard for our kids -- and they don't have a kid with CHARGE of their own --

they've chosen to do this for their work. It's awe-inspiring. If you need

financial support to attend, check into state early intervention funds and local

organizations like Lions Club and Rotary. There are other families from FL who

might be able to fill you in on any state money available.

I guess I should end this book and get to bed. I wish you could meet some of us

face-to-face before next summer. It might make you feel much better. Just know

that there is a whole world of folks here in " CHARGEland " who are on this

journey with you.

Michele W

mom to Aubrie (4.5 yrs) CHaRgE and (10 yrs)

[Guest guest]

Get out of my head ...I think it is safe to say ou are normal You have

just wrote exactly how I have been feeling ........

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

[Guest guest]

THANK YOU ALL SO MUCH. I just got done reading everyones emails. I can't

tell you how much I appreciate everyones support.

and I took yesterday off and we are going to take today off and do

NOTHING. I didn't even get out of pj yesterday. I feel guilty for

cancelling appointments but I can't do it today. Plus my husband is off

today and he would like to have a movie marathon and order chinese for

dinner. The weekend is coming and we never have any appointments on the

weekend but I cant make it till then.

Actually today won't be a complete off day. 's visual teacher and some

other guy from the Florida school of deaf and blind is coming to evaluate

. We know can see but not to what extent (his left eye has been

doing it's own thing the last 2 weeks--it really has been crossing and

wandering more than ever--I guess it's time to patch again) and his hearing

is unknown. He just isn't consistent with responses and he vocals very

little (just aahh sounds). I've started to learn sign language. It's

actually fun but I wonder if I'm ever going to learn it good enough to be

fluent.

Well, thanks again everyone. I'll let ya know for sure when he's surgery is

going to be and all the other procedures. I so look forward to meeting you

all in Cleveland. I do wish there was some way to meet before. Sounds like

we would all have so much fun hanging out together. Does anyone live here in

Cape Coral, Florida. (just by Ft. Myers)???????????

That's amazing how many of us have and are going thru all the same feelings.

I think what disturbs me the most is the unknown. There is so much with

chargers that is just wait and see?????? I don't like that at all. I want

to know now. I love my son more than I could ever love someone. I

just get those overwhelming feeling of why?? why?? why?? He doesn't deserve

any of this. The life I lived before was (how should I put it) very

undesirable (down right disgusting at times) and I blame myself a lot. I

straightened up when I got pregnant but I feel because all the nastiness that

I was involved in before lead to all this. I should be the one punished not

!!!!!!!! I really hate myself at times when I think back but people

that know me then and now keep reminding me how much I've changed.

I'm running on again. Sorry. I will end this now. Thanks a lot. God bless

you all I will keep all of you in my prayers.

Lynda Dean, mom of charger, and wife to Dean

[Guest guest]

THANK YOU ALL SO MUCH. I just got done reading everyones emails. I can't

tell you how much I appreciate everyones support.

and I took yesterday off and we are going to take today off and do

NOTHING. I didn't even get out of pj yesterday. I feel guilty for

cancelling appointments but I can't do it today. Plus my husband is off

today and he would like to have a movie marathon and order chinese for

dinner. The weekend is coming and we never have any appointments on the

weekend but I cant make it till then.

Actually today won't be a complete off day. 's visual teacher and some

other guy from the Florida school of deaf and blind is coming to evaluate

. We know can see but not to what extent (his left eye has been

doing it's own thing the last 2 weeks--it really has been crossing and

wandering more than ever--I guess it's time to patch again) and his hearing

is unknown. He just isn't consistent with responses and he vocals very

little (just aahh sounds). I've started to learn sign language. It's

actually fun but I wonder if I'm ever going to learn it good enough to be

fluent.

Well, thanks again everyone. I'll let ya know for sure when he's surgery is

going to be and all the other procedures. I so look forward to meeting you

all in Cleveland. I do wish there was some way to meet before. Sounds like

we would all have so much fun hanging out together. Does anyone live here in

Cape Coral, Florida. (just by Ft. Myers)???????????

That's amazing how many of us have and are going thru all the same feelings.

I think what disturbs me the most is the unknown. There is so much with

chargers that is just wait and see?????? I don't like that at all. I want

to know now. I love my son more than I could ever love someone. I

just get those overwhelming feeling of why?? why?? why?? He doesn't deserve

any of this. The life I lived before was (how should I put it) very

undesirable (down right disgusting at times) and I blame myself a lot. I

straightened up when I got pregnant but I feel because all the nastiness that

I was involved in before lead to all this. I should be the one punished not

!!!!!!!! I really hate myself at times when I think back but people

that know me then and now keep reminding me how much I've changed.

I'm running on again. Sorry. I will end this now. Thanks a lot. God bless

you all I will keep all of you in my prayers.

Lynda Dean, mom of charger, and wife to Dean

[Guest guest]

THANK YOU ALL SO MUCH. I just got done reading everyones emails. I can't

tell you how much I appreciate everyones support.

and I took yesterday off and we are going to take today off and do

NOTHING. I didn't even get out of pj yesterday. I feel guilty for

cancelling appointments but I can't do it today. Plus my husband is off

today and he would like to have a movie marathon and order chinese for

dinner. The weekend is coming and we never have any appointments on the

weekend but I cant make it till then.

Actually today won't be a complete off day. 's visual teacher and some

other guy from the Florida school of deaf and blind is coming to evaluate

. We know can see but not to what extent (his left eye has been

doing it's own thing the last 2 weeks--it really has been crossing and

wandering more than ever--I guess it's time to patch again) and his hearing

is unknown. He just isn't consistent with responses and he vocals very

little (just aahh sounds). I've started to learn sign language. It's

actually fun but I wonder if I'm ever going to learn it good enough to be

fluent.

Well, thanks again everyone. I'll let ya know for sure when he's surgery is

going to be and all the other procedures. I so look forward to meeting you

all in Cleveland. I do wish there was some way to meet before. Sounds like

we would all have so much fun hanging out together. Does anyone live here in

Cape Coral, Florida. (just by Ft. Myers)???????????

That's amazing how many of us have and are going thru all the same feelings.

I think what disturbs me the most is the unknown. There is so much with

chargers that is just wait and see?????? I don't like that at all. I want

to know now. I love my son more than I could ever love someone. I

just get those overwhelming feeling of why?? why?? why?? He doesn't deserve

any of this. The life I lived before was (how should I put it) very

undesirable (down right disgusting at times) and I blame myself a lot. I

straightened up when I got pregnant but I feel because all the nastiness that

I was involved in before lead to all this. I should be the one punished not

!!!!!!!! I really hate myself at times when I think back but people

that know me then and now keep reminding me how much I've changed.

I'm running on again. Sorry. I will end this now. Thanks a lot. God bless

you all I will keep all of you in my prayers.

Lynda Dean, mom of charger, and wife to Dean

[Guest guest]

Lynda,

Good for you for taking a day or two off! You just HAVE to do it sometimes and

you are NOT a bad mom for cancelling appointments. Your sanity must come first!

Regarding your last post to Casey about never going to a conference, I am going

to add my 2 cents here, I have been to both conferences since Kennedy was born

('99 in Houston & '01 in Indianapolis) and I can't even express to you how

wonderful an experience they were. It is just such an amazing experience to

meet so many other families who are " living your life " . I really hope you can

make it, I will be bringing Kennedy for the first time to this conference in

2003 and we would love to meet you!

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

Re: re: surgery

THANK YOU ALL SO MUCH. I just got done reading everyones emails. I can't

tell you how much I appreciate everyones support.

and I took yesterday off and we are going to take today off and do

NOTHING. I didn't even get out of pj yesterday. I feel guilty for

cancelling appointments but I can't do it today. Plus my husband is off

today and he would like to have a movie marathon and order chinese for

dinner. The weekend is coming and we never have any appointments on the

weekend but I cant make it till then.

Actually today won't be a complete off day. 's visual teacher and some

other guy from the Florida school of deaf and blind is coming to evaluate

. We know can see but not to what extent (his left eye has been

doing it's own thing the last 2 weeks--it really has been crossing and

wandering more than ever--I guess it's time to patch again) and his hearing

is unknown. He just isn't consistent with responses and he vocals very

little (just aahh sounds). I've started to learn sign language. It's

actually fun but I wonder if I'm ever going to learn it good enough to be

fluent.

Well, thanks again everyone. I'll let ya know for sure when he's surgery is

going to be and all the other procedures. I so look forward to meeting you

all in Cleveland. I do wish there was some way to meet before. Sounds like

we would all have so much fun hanging out together. Does anyone live here in

Cape Coral, Florida. (just by Ft. Myers)???????????

That's amazing how many of us have and are going thru all the same feelings.

I think what disturbs me the most is the unknown. There is so much with

chargers that is just wait and see?????? I don't like that at all. I want

to know now. I love my son more than I could ever love someone. I

just get those overwhelming feeling of why?? why?? why?? He doesn't deserve

any of this. The life I lived before was (how should I put it) very

undesirable (down right disgusting at times) and I blame myself a lot. I

straightened up when I got pregnant but I feel because all the nastiness that

I was involved in before lead to all this. I should be the one punished not

!!!!!!!! I really hate myself at times when I think back but people

that know me then and now keep reminding me how much I've changed.

I'm running on again. Sorry. I will end this now. Thanks a lot. God bless

you all I will keep all of you in my prayers.

Lynda Dean, mom of charger, and wife to Dean

[Guest guest]

Lynda,

Good for you for taking a day or two off! You just HAVE to do it sometimes and

you are NOT a bad mom for cancelling appointments. Your sanity must come first!

Regarding your last post to Casey about never going to a conference, I am going

to add my 2 cents here, I have been to both conferences since Kennedy was born

('99 in Houston & '01 in Indianapolis) and I can't even express to you how

wonderful an experience they were. It is just such an amazing experience to

meet so many other families who are " living your life " . I really hope you can

make it, I will be bringing Kennedy for the first time to this conference in

2003 and we would love to meet you!

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

Re: re: surgery

THANK YOU ALL SO MUCH. I just got done reading everyones emails. I can't

tell you how much I appreciate everyones support.

and I took yesterday off and we are going to take today off and do

NOTHING. I didn't even get out of pj yesterday. I feel guilty for

cancelling appointments but I can't do it today. Plus my husband is off

today and he would like to have a movie marathon and order chinese for

dinner. The weekend is coming and we never have any appointments on the

weekend but I cant make it till then.

Actually today won't be a complete off day. 's visual teacher and some

other guy from the Florida school of deaf and blind is coming to evaluate

. We know can see but not to what extent (his left eye has been

doing it's own thing the last 2 weeks--it really has been crossing and

wandering more than ever--I guess it's time to patch again) and his hearing

is unknown. He just isn't consistent with responses and he vocals very

little (just aahh sounds). I've started to learn sign language. It's

actually fun but I wonder if I'm ever going to learn it good enough to be

fluent.

Well, thanks again everyone. I'll let ya know for sure when he's surgery is

going to be and all the other procedures. I so look forward to meeting you

all in Cleveland. I do wish there was some way to meet before. Sounds like

we would all have so much fun hanging out together. Does anyone live here in

Cape Coral, Florida. (just by Ft. Myers)???????????

That's amazing how many of us have and are going thru all the same feelings.

I think what disturbs me the most is the unknown. There is so much with

chargers that is just wait and see?????? I don't like that at all. I want

to know now. I love my son more than I could ever love someone. I

just get those overwhelming feeling of why?? why?? why?? He doesn't deserve

any of this. The life I lived before was (how should I put it) very

undesirable (down right disgusting at times) and I blame myself a lot. I

straightened up when I got pregnant but I feel because all the nastiness that

I was involved in before lead to all this. I should be the one punished not

!!!!!!!! I really hate myself at times when I think back but people

that know me then and now keep reminding me how much I've changed.

I'm running on again. Sorry. I will end this now. Thanks a lot. God bless

you all I will keep all of you in my prayers.

Lynda Dean, mom of charger, and wife to Dean

[Guest guest]

Lynda,

Good for you for taking a day or two off! You just HAVE to do it sometimes and

you are NOT a bad mom for cancelling appointments. Your sanity must come first!

Regarding your last post to Casey about never going to a conference, I am going

to add my 2 cents here, I have been to both conferences since Kennedy was born

('99 in Houston & '01 in Indianapolis) and I can't even express to you how

wonderful an experience they were. It is just such an amazing experience to

meet so many other families who are " living your life " . I really hope you can

make it, I will be bringing Kennedy for the first time to this conference in

2003 and we would love to meet you!

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

Re: re: surgery

THANK YOU ALL SO MUCH. I just got done reading everyones emails. I can't

tell you how much I appreciate everyones support.

and I took yesterday off and we are going to take today off and do

NOTHING. I didn't even get out of pj yesterday. I feel guilty for

cancelling appointments but I can't do it today. Plus my husband is off

today and he would like to have a movie marathon and order chinese for

dinner. The weekend is coming and we never have any appointments on the

weekend but I cant make it till then.

Actually today won't be a complete off day. 's visual teacher and some

other guy from the Florida school of deaf and blind is coming to evaluate

. We know can see but not to what extent (his left eye has been

doing it's own thing the last 2 weeks--it really has been crossing and

wandering more than ever--I guess it's time to patch again) and his hearing

is unknown. He just isn't consistent with responses and he vocals very

little (just aahh sounds). I've started to learn sign language. It's

actually fun but I wonder if I'm ever going to learn it good enough to be

fluent.

Well, thanks again everyone. I'll let ya know for sure when he's surgery is

going to be and all the other procedures. I so look forward to meeting you

all in Cleveland. I do wish there was some way to meet before. Sounds like

we would all have so much fun hanging out together. Does anyone live here in

Cape Coral, Florida. (just by Ft. Myers)???????????

That's amazing how many of us have and are going thru all the same feelings.

I think what disturbs me the most is the unknown. There is so much with

chargers that is just wait and see?????? I don't like that at all. I want

to know now. I love my son more than I could ever love someone. I

just get those overwhelming feeling of why?? why?? why?? He doesn't deserve

any of this. The life I lived before was (how should I put it) very

undesirable (down right disgusting at times) and I blame myself a lot. I

straightened up when I got pregnant but I feel because all the nastiness that

I was involved in before lead to all this. I should be the one punished not

!!!!!!!! I really hate myself at times when I think back but people

that know me then and now keep reminding me how much I've changed.

I'm running on again. Sorry. I will end this now. Thanks a lot. God bless

you all I will keep all of you in my prayers.

Lynda Dean, mom of charger, and wife to Dean

[Guest guest]

Lynda-

Ok -- do NOT blame yourself for having CHARGE! Nothing you did in the

past led to it. There are people of all kinds who are affected by CHARGE.

CHARGE is part of the randomness of the universe. You couldn't avoid it, you

don't deserve it, doesn't deserve it, no one deserves it. It just happens

and we do our best to deal with it. Whatever you did in the past -- forget

about it. We all have things we regret. As Maya Angelou said, " When I knew

better, I did better. " Do your best and remember that your best may not always

be perfect.

You, your husband, and will be fine. It will just take time to get

through the roughest part. A book that I found therapeutic is called Changed by

a Child. If you haven't read it already, you might get a copy and see if you

find some comfort there.

As far as not knowing what the future will bring -- that too gets easier with

time. It used to drive me crazy that I didn't know if Aubrie would ever ride a

bike, rollerskate, drive a car, go to prom, be a mom... But now I'm more at

peace with that. I see that she can do much more than I anticipated she'd do at

this age. She does some things differently than others do them. But she's

happy -- deliriously so. I'm confident that she will grow into a successful,

happy woman with loved ones in her life. I can't imagine what that will look

like for her -- but she'll define it on her own as she grows. It's also helped

me to relax my expectations for my son. I truly don't think much about what he

will become or what he will do. I just know that he will be successful and

happy -- by his own definition.

Another book --- sorry. You've touched a cord. I'm not that far in front of

you so those early feelings are near the surface.

Michele W

mom to Aubrie (4.5 yrs) CHaRgE and (10 yrs)

[Guest guest]

Lynda-

Ok -- do NOT blame yourself for having CHARGE! Nothing you did in the

past led to it. There are people of all kinds who are affected by CHARGE.

CHARGE is part of the randomness of the universe. You couldn't avoid it, you

don't deserve it, doesn't deserve it, no one deserves it. It just happens

and we do our best to deal with it. Whatever you did in the past -- forget

about it. We all have things we regret. As Maya Angelou said, " When I knew

better, I did better. " Do your best and remember that your best may not always

be perfect.

You, your husband, and will be fine. It will just take time to get

through the roughest part. A book that I found therapeutic is called Changed by

a Child. If you haven't read it already, you might get a copy and see if you

find some comfort there.

As far as not knowing what the future will bring -- that too gets easier with

time. It used to drive me crazy that I didn't know if Aubrie would ever ride a

bike, rollerskate, drive a car, go to prom, be a mom... But now I'm more at

peace with that. I see that she can do much more than I anticipated she'd do at

this age. She does some things differently than others do them. But she's

happy -- deliriously so. I'm confident that she will grow into a successful,

happy woman with loved ones in her life. I can't imagine what that will look

like for her -- but she'll define it on her own as she grows. It's also helped

me to relax my expectations for my son. I truly don't think much about what he

will become or what he will do. I just know that he will be successful and

happy -- by his own definition.

Another book --- sorry. You've touched a cord. I'm not that far in front of

you so those early feelings are near the surface.

Michele W

mom to Aubrie (4.5 yrs) CHaRgE and (10 yrs)

[Guest guest]

Lynda-

Ok -- do NOT blame yourself for having CHARGE! Nothing you did in the

past led to it. There are people of all kinds who are affected by CHARGE.

CHARGE is part of the randomness of the universe. You couldn't avoid it, you

don't deserve it, doesn't deserve it, no one deserves it. It just happens

and we do our best to deal with it. Whatever you did in the past -- forget

about it. We all have things we regret. As Maya Angelou said, " When I knew

better, I did better. " Do your best and remember that your best may not always

be perfect.

You, your husband, and will be fine. It will just take time to get

through the roughest part. A book that I found therapeutic is called Changed by

a Child. If you haven't read it already, you might get a copy and see if you

find some comfort there.

As far as not knowing what the future will bring -- that too gets easier with

time. It used to drive me crazy that I didn't know if Aubrie would ever ride a

bike, rollerskate, drive a car, go to prom, be a mom... But now I'm more at

peace with that. I see that she can do much more than I anticipated she'd do at

this age. She does some things differently than others do them. But she's

happy -- deliriously so. I'm confident that she will grow into a successful,

happy woman with loved ones in her life. I can't imagine what that will look

like for her -- but she'll define it on her own as she grows. It's also helped

me to relax my expectations for my son. I truly don't think much about what he

will become or what he will do. I just know that he will be successful and

happy -- by his own definition.

Another book --- sorry. You've touched a cord. I'm not that far in front of

you so those early feelings are near the surface.

Michele W

mom to Aubrie (4.5 yrs) CHaRgE and (10 yrs)

[Guest guest]

I have to get in this one.... the day you wrote this I got on here to

write the exactly same thing no joking here at all.... went in for

a CT scan bronh scope, and sedated hearing test on 9/11 he did fine with

all that as far as putting him under but then the following monday he

got sick go to the ped... they send us to the hospital by ambulance ( a

whole block away) I try to tell them dad has a cold well thats all they

thought to after chest exray blah blah blah get admitted stay for three

days..go home Wednesday ...sunday respirations back up to 70-80 cant get

them down try all day so we call the ped get some one who has never

heard of so we go to the ER more chest exrays he has fricken

(excuse my mouth) pneumonia get admitted again he never acts sick other

then the increased respirations so he gets IV antibiotics for 48 hours

send him home respirations are close to normal ......NEXT DAY low grade

temp respirations creeping back up and this time his heart rate is going

up to all I manger to et done is have PT waste her time coming over get

a heart cath scheduled for 10/17 re-arrange all his appointments for

this week the the nurse says we need to call an ambulance and get him

in now..I say let me call the doctor first (other wise we end up at a

local hospital BLAH BLAH) and he is not that bad!!!!!!!so the doc says

take him to either there office or the ER I am all for the office but

the nurse wants ER I said what ever I am taking a shower before we do

anything get in the shower she screams I am calling 911 now so I throw

clothes on (shampoo in the hair soap all over me) go out to check him he

is giggling away having a great old time but of course here comes the

ambulance ...they were like lady he is very stable looks better then we

have ever seen him long story short they said they like coming here

because I am a very calm mom...Thank you!!!

! so we get to ER he is back to normal but they want to watch him for

the day fun fun fun sit there all day his respiration go up and down all

day but he isn't bothered so they say we can go home I call tell

him there is a list of what to bring up ok we live an hour away

.....gets all the way out there mentions some nurse called wanted to know

when we are moving heheeh didnt know I was leaving him yet throws

that in my face in the ER and in the same sentance tell me OOOPPPPSSS I

forgot the suction machine ( has a trach) (did Imention I lve an

hour away from the stupid hospital??????????) so luckly our med supply

company isnt that far away and they LOVE me called them run over there

during rush hour traffice( takes an hour and a half) come back say give

me my discharge papers I am ready to go well the home hurse that is with

me starts freaking ot cause his resperation are 70 again ( after they

explained 900000000 times that they are going to do that his lungs are

healing and someone for got he needed his stress doses of steriods that

is a whole nother story in its selve.......so the doctors says some time

we admitt kds because there parents dont feel safe bringing them

home...the nurse is like I think thats what you should do now I am going

to starngle some one I get up and say when did you become his mother

?you dont make these desions I do I am comfortable with taking him home

you get to go home tonight no matter what happens if you think I am

making a mistake then brian and I will take him home our selves and you

can find your own ride.........so the doctors starts laughing says I was

wondering when you were going to do that ..........so we go home he is

fine brian and I go to the store he goes crazy about me plannng this

move world waar three follows I had a mini break down BLAH BLAH BLAH

this is how my ife has been for the last year to oh yeah I called and

canceled all his appointments for to day left messages on every ones

machines a therapist calls me back at 11 PM wanting to know why I think

I told her to @#$#$%^^ off I dont remember cause I was sleeping........I

live for the day I am 90 years old and get to dye..... so dont for a

minute think you are the only one living in hell for the time being the

cure for me is when the ittle mosnter smiles at me it makes ever thing

worth while I would go threw yesterday every day for the rest of my life

if it would make better some times you jst gotta take the time to

feel sorry for your selve.....

As for thinkng things you did before in you life made this happen to

your child I look at it this way if I wasnt the wild child I was I would

NEVER be able to handle this ...all the bad stuff I did prepared me to

be not afraid to get as mean or forceful as I have to to get what my

child needs ....

mom to 11 months soon to be 1year next monday wwwwooooo

hhhhhoooo

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

[Guest guest]

Dear Lynda,

I hear you for sure. Living with CHARGE is incredibly difficult in most

cases. You sound like you are doing everything possible to help your son

live a good life. You are doing a great job.

All the running around does take a significant toll on everyday life. I

know as our daughter had 30 surgeries in her early years. And she is our

youngest child.

One way I tried to keep things on an even keel was to focus on ways to make

all of us happy. For myself, that meant listening to music, which is one

of my all time favorite things to do, (give me some jazz music and I am a

happy person), prayer, and trying to find fun things for all of us to do.

When Kendra was 3, she got her trach out and my husband's job took us to

Missourri for a year. To make a change from the first three years of such

stress, we did all the fun things we could think of that year. We went to

the Cardinals baseball games which our older two kids loved, and went to

different kid-friendly museums. We did something interesting and different

almost every weekend. It was one of our best years. We visited Chicago in

the snow and saw Hannibal Missouri. We put our feet in the Mississippi

River and went to that incredible arch.

It didn't have to be Missouri, it just happened to be. It was simply fun

for us to be doing and experiencing new and wonderful things and trying to

have our hearts and souls experience joy and happiness and optimism. Since

we were in a different state it was easy to remind ourselves to take

advantage of the opportunity as we only had a year to do it, but we could

have done that same thing in our own state. It could have been sitting in

bed and reading while drinking hot tea.

Now my husband and I try to focus on doing some things we really enjoy such

as learning about organic gardening and going out together. We are able to

do that several times a month now and wish we had done it years and years

earlier. It is really important. And keeping up with friends can be

difficult but is really vital as you know.

I think that eating right can help one when one is under incredible

stress. I really recommend the book: The Schwarzbein Connection and

companion cookbook. Dr. Schwarzbein has a sister-in-law whose son has

CHARGE. The book helps one eat in ways that promote good blood sugar

levels, decrease health risks for cancer and heart problems and optimize

one's overall health and weight. Following the suggestions in the book may

help with neurotransmitters and therefore moods.

I think you are extremely smart to look for solutions. It's not easy,

but it is doable. If the load doesn't feel lighter soon, I would think

talking with a professional might help. You are really important. Take

good care of yourself.

Best wishes to you,

At 04:54 PM 9/26/02 -0400, you wrote:

>Hi Lynda, My son is 7 and has a mild case of Charge--medically , nothing is

>life threatening, but all the same there have been many surgeries and will

>have at least one more in the next year. It does get easier, and yes, you

>have to be selfish sometimes. Take time for yourself--your husband and your

>sanity!!!!

>

>you are in our prayers---here's hoping it gets better sooner than later.

>

>, mom to Timmy 7 ChARGE, keegan 4.5, and liam 23 mo, wife to pat

> re: surgery

>

>

> >

> > Hello. My son, , is about to undergo another surgery for undesceded

>testicles. While in hospital, other doctors have ordered tests and blood

>draws. As you all know, our childern don't do well under anesthia. Some of

>the other test being ordered are BAER w/hearing threshold, brain MRI, and

>growth hormone blood test. That's just after talking to only two of the 11

>doctors. Wonder how many other test will be ordered??????? So

>overwhelming. All I've done is cry the last couple of days. Not because

>I'm " worried " about the test just a break down from the load. My son will

>be 1 year old. The past year I've been ripping and running from this doc to

>that doc and this therapist to that therapist, plus 3 therapist coming to

>house. Reality of all this is really starting to set in on my husband and

>I. I've been too " busy " the last year to really " think " about CHARGE and

>Klinefelter's syndrome (a chromosome anomally also called xxy syndrome).

> >

> > I need your prayers for my son . Please also include prayers for my

>husband and I who need some super natural strength to continue. I am

>feeling pretty exhausted these days. I never feel like I can ever get

>caught up (cleaning, sleep, laundry, cooking, dishes, " normal " daily

>things). My days are filled with , who I love and adore very much. I

>wouldn't have it any other way. I do wish that there was just a couple

>extra hours in the day so I could maybe, just once in a while, take a nap or

>even a massage (That sounds so incredible). Is that being selfish??? My

>husband and I literally have no friends. He is busy working (xtra hours

>because I have to " stay at home " , when and I are home). We moved from

>Cinti to Cape Coral Florida in 2001 when I got pregnant. I am an easy

>person to get along with and always had friends. It's just that I'm too

>busy. How do you all balance????

> >

> > Please, any response will be greatly appreicated.

> >

> > Lynda Dean, mom of charger, 1yr old on Oct. 7

> >

> > dean2313@...

> >

> > dean2313@...

> >

> >

[Guest guest]

Dear Lynda,

I hear you for sure. Living with CHARGE is incredibly difficult in most

cases. You sound like you are doing everything possible to help your son

live a good life. You are doing a great job.

All the running around does take a significant toll on everyday life. I

know as our daughter had 30 surgeries in her early years. And she is our

youngest child.

One way I tried to keep things on an even keel was to focus on ways to make

all of us happy. For myself, that meant listening to music, which is one

of my all time favorite things to do, (give me some jazz music and I am a

happy person), prayer, and trying to find fun things for all of us to do.

When Kendra was 3, she got her trach out and my husband's job took us to

Missourri for a year. To make a change from the first three years of such

stress, we did all the fun things we could think of that year. We went to

the Cardinals baseball games which our older two kids loved, and went to

different kid-friendly museums. We did something interesting and different

almost every weekend. It was one of our best years. We visited Chicago in

the snow and saw Hannibal Missouri. We put our feet in the Mississippi

River and went to that incredible arch.

It didn't have to be Missouri, it just happened to be. It was simply fun

for us to be doing and experiencing new and wonderful things and trying to

have our hearts and souls experience joy and happiness and optimism. Since

we were in a different state it was easy to remind ourselves to take

advantage of the opportunity as we only had a year to do it, but we could

have done that same thing in our own state. It could have been sitting in

bed and reading while drinking hot tea.

Now my husband and I try to focus on doing some things we really enjoy such

as learning about organic gardening and going out together. We are able to

do that several times a month now and wish we had done it years and years

earlier. It is really important. And keeping up with friends can be

difficult but is really vital as you know.

I think that eating right can help one when one is under incredible

stress. I really recommend the book: The Schwarzbein Connection and

companion cookbook. Dr. Schwarzbein has a sister-in-law whose son has

CHARGE. The book helps one eat in ways that promote good blood sugar

levels, decrease health risks for cancer and heart problems and optimize

one's overall health and weight. Following the suggestions in the book may

help with neurotransmitters and therefore moods.

I think you are extremely smart to look for solutions. It's not easy,

but it is doable. If the load doesn't feel lighter soon, I would think

talking with a professional might help. You are really important. Take

good care of yourself.

Best wishes to you,

At 04:54 PM 9/26/02 -0400, you wrote:

>Hi Lynda, My son is 7 and has a mild case of Charge--medically , nothing is

>life threatening, but all the same there have been many surgeries and will

>have at least one more in the next year. It does get easier, and yes, you

>have to be selfish sometimes. Take time for yourself--your husband and your

>sanity!!!!

>

>you are in our prayers---here's hoping it gets better sooner than later.

>

>, mom to Timmy 7 ChARGE, keegan 4.5, and liam 23 mo, wife to pat

> re: surgery

>

>

> >

> > Hello. My son, , is about to undergo another surgery for undesceded

>testicles. While in hospital, other doctors have ordered tests and blood

>draws. As you all know, our childern don't do well under anesthia. Some of

>the other test being ordered are BAER w/hearing threshold, brain MRI, and

>growth hormone blood test. That's just after talking to only two of the 11

>doctors. Wonder how many other test will be ordered??????? So

>overwhelming. All I've done is cry the last couple of days. Not because

>I'm " worried " about the test just a break down from the load. My son will

>be 1 year old. The past year I've been ripping and running from this doc to

>that doc and this therapist to that therapist, plus 3 therapist coming to

>house. Reality of all this is really starting to set in on my husband and

>I. I've been too " busy " the last year to really " think " about CHARGE and

>Klinefelter's syndrome (a chromosome anomally also called xxy syndrome).

> >

> > I need your prayers for my son . Please also include prayers for my

>husband and I who need some super natural strength to continue. I am

>feeling pretty exhausted these days. I never feel like I can ever get

>caught up (cleaning, sleep, laundry, cooking, dishes, " normal " daily

>things). My days are filled with , who I love and adore very much. I

>wouldn't have it any other way. I do wish that there was just a couple

>extra hours in the day so I could maybe, just once in a while, take a nap or

>even a massage (That sounds so incredible). Is that being selfish??? My

>husband and I literally have no friends. He is busy working (xtra hours

>because I have to " stay at home " , when and I are home). We moved from

>Cinti to Cape Coral Florida in 2001 when I got pregnant. I am an easy

>person to get along with and always had friends. It's just that I'm too

>busy. How do you all balance????

> >

> > Please, any response will be greatly appreicated.

> >

> > Lynda Dean, mom of charger, 1yr old on Oct. 7

> >

> > dean2313@...

> >

> > dean2313@...

> >

> >

[Guest guest]

Dear Lynda,

I hear you for sure. Living with CHARGE is incredibly difficult in most

cases. You sound like you are doing everything possible to help your son

live a good life. You are doing a great job.

All the running around does take a significant toll on everyday life. I

know as our daughter had 30 surgeries in her early years. And she is our

youngest child.

One way I tried to keep things on an even keel was to focus on ways to make

all of us happy. For myself, that meant listening to music, which is one

of my all time favorite things to do, (give me some jazz music and I am a

happy person), prayer, and trying to find fun things for all of us to do.

When Kendra was 3, she got her trach out and my husband's job took us to

Missourri for a year. To make a change from the first three years of such

stress, we did all the fun things we could think of that year. We went to

the Cardinals baseball games which our older two kids loved, and went to

different kid-friendly museums. We did something interesting and different

almost every weekend. It was one of our best years. We visited Chicago in

the snow and saw Hannibal Missouri. We put our feet in the Mississippi

River and went to that incredible arch.

It didn't have to be Missouri, it just happened to be. It was simply fun

for us to be doing and experiencing new and wonderful things and trying to

have our hearts and souls experience joy and happiness and optimism. Since

we were in a different state it was easy to remind ourselves to take

advantage of the opportunity as we only had a year to do it, but we could

have done that same thing in our own state. It could have been sitting in

bed and reading while drinking hot tea.

Now my husband and I try to focus on doing some things we really enjoy such

as learning about organic gardening and going out together. We are able to

do that several times a month now and wish we had done it years and years

earlier. It is really important. And keeping up with friends can be

difficult but is really vital as you know.

I think that eating right can help one when one is under incredible

stress. I really recommend the book: The Schwarzbein Connection and

companion cookbook. Dr. Schwarzbein has a sister-in-law whose son has

CHARGE. The book helps one eat in ways that promote good blood sugar

levels, decrease health risks for cancer and heart problems and optimize

one's overall health and weight. Following the suggestions in the book may

help with neurotransmitters and therefore moods.

I think you are extremely smart to look for solutions. It's not easy,

but it is doable. If the load doesn't feel lighter soon, I would think

talking with a professional might help. You are really important. Take

good care of yourself.

Best wishes to you,

At 04:54 PM 9/26/02 -0400, you wrote:

>Hi Lynda, My son is 7 and has a mild case of Charge--medically , nothing is

>life threatening, but all the same there have been many surgeries and will

>have at least one more in the next year. It does get easier, and yes, you

>have to be selfish sometimes. Take time for yourself--your husband and your

>sanity!!!!

>

>you are in our prayers---here's hoping it gets better sooner than later.

>

>, mom to Timmy 7 ChARGE, keegan 4.5, and liam 23 mo, wife to pat

> re: surgery

>

>

> >

> > Hello. My son, , is about to undergo another surgery for undesceded

>testicles. While in hospital, other doctors have ordered tests and blood

>draws. As you all know, our childern don't do well under anesthia. Some of

>the other test being ordered are BAER w/hearing threshold, brain MRI, and

>growth hormone blood test. That's just after talking to only two of the 11

>doctors. Wonder how many other test will be ordered??????? So

>overwhelming. All I've done is cry the last couple of days. Not because

>I'm " worried " about the test just a break down from the load. My son will

>be 1 year old. The past year I've been ripping and running from this doc to

>that doc and this therapist to that therapist, plus 3 therapist coming to

>house. Reality of all this is really starting to set in on my husband and

>I. I've been too " busy " the last year to really " think " about CHARGE and

>Klinefelter's syndrome (a chromosome anomally also called xxy syndrome).

> >

> > I need your prayers for my son . Please also include prayers for my

>husband and I who need some super natural strength to continue. I am

>feeling pretty exhausted these days. I never feel like I can ever get

>caught up (cleaning, sleep, laundry, cooking, dishes, " normal " daily

>things). My days are filled with , who I love and adore very much. I

>wouldn't have it any other way. I do wish that there was just a couple

>extra hours in the day so I could maybe, just once in a while, take a nap or

>even a massage (That sounds so incredible). Is that being selfish??? My

>husband and I literally have no friends. He is busy working (xtra hours

>because I have to " stay at home " , when and I are home). We moved from

>Cinti to Cape Coral Florida in 2001 when I got pregnant. I am an easy

>person to get along with and always had friends. It's just that I'm too

>busy. How do you all balance????

> >

> > Please, any response will be greatly appreicated.

> >

> > Lynda Dean, mom of charger, 1yr old on Oct. 7

> >

> > dean2313@...

> >

> > dean2313@...

> >

> >

[Guest guest]

,

It does sound like we are in the same spot at the same time. Our sons are

the same age too.

Parents do know best. I know what you mean about nurses. When we were in

the hospital, the nurses were constantly trying to suchion 's throat.

He has trachemalcia and subglottic stenosis (narrowing of airway). Needless

to say, when he breathes he sounds like he has the worst cold ever. I used

to laugh when I took him the store. Everyone used to look at me like I was

terrible parent for taking my poor sick child out in public. They just

didn't know that was . That's how he sounded always until a couple

months ago. He sounds a lot better know. It's at the point know, that when

I don't hear him on the monitor I take off running. As long as he snored and

made lots of noise sleeping I knew he was alive. I used to have to tell the

nurses no all the time when they came in to suchion him out. They used to

sneak in room when I would step out because they didn't think I knew what I

was talking about. But, they could never get anything to come out of his

throat--I would say " told you so!!!!!!!!! " .

Good luck. I'll be keeping you in prayer. Can't wait to meet you.

Lynda, charger mom, (11months) wife, Dean

[Guest guest]

, thanks for the words of encouragement. Can't wait to meet you.

Lynda

[Guest guest]

,

is considered Mild also. I hate to think what severe would be like.

My heart and prayers go out to you all that are affected. Thanks for your

prayers.

Lynda

[Guest guest]

,

is considered Mild also. I hate to think what severe would be like.

My heart and prayers go out to you all that are affected. Thanks for your

prayers.

Lynda

[Guest guest]

,

is considered Mild also. I hate to think what severe would be like.

My heart and prayers go out to you all that are affected. Thanks for your

prayers.

Lynda