Re: How do you deal with your feelings?

[Guest guest]

Dianne,

We are at the point now where we really only go to doctors every couple of

months. I find that I feel much better in between appointment cycles than I do

when we're in the middle of one. I hate hearing anything other than, " Ma'am

this is totally great! " And of course both of my boys are a little different, so

I can be very sensitive in discussions about " normal " kids. I think worrying

about their cognitive ability is the hardest for me too. And sometimes I

wonder why they tell you anything about life expectancy at all. I mean does it

help

anything? They are so often wrong, and then you spend so much time waiting

for the end of your child's life. No parent should have to do that. I mean, we

aren't set up that way. I can't imagine what a blackness that would bring

around. No wonder you panic. I'm sure that some of the amazing people on here

who've suffered a loss can help you maybe find some peace.

I agree with about the trauma. I still freak out in hospitals, to the

point of physical symptoms. 's heart surgery was a terrible experience.

Even though it was 9 months ago, I still have a hard time letting doctors near

him unless I am right there. Which, by the way, we have a sedated BAER today

that I am dreading.

I am actually looking for a counselor now, and may go back on meds myself.

(Let me know how you work all of this through Tricare!) From most of what I have

read, post partum depression can extend well into the first year or beyond,

and therapy AND medication are the most effective treatment. And I think that

for me, I may need some time just to experience the greif that is lingering.

It's kind of a triple whammy, I'm still sad for the life/child we thought we

would have and didn't, and then I'm sad for everything my son has to go through,

and on top of it all, worried if he'll even make it.

Luckily, is at a shore site now, so he's not been deployed for any of

this. But he's still usually not there when I get any news, good or bad. He's

still trying to bond with , and tends to distance himself from all the

medical stuff. I feel pretty alone sometimes too, very similar to when you try

and keep up a cheery deployment front. Does your EFMP have a support group?

They have one here that I think I would go to if wasn't home.

There is something I saw on Oprah the other day. Don't laugh, I'm serious!

This beautiful girl had been terribly burned and disfigured in a car accident.

And she said that she gives herself five minutes a day to be angry and sorry

for herself, but the rest of the time she has to make her life enjoyable or she

may as well have died. That really hit home with me. So, for a few minutes a

day, I hate CHARGE, and I feel like crap. Then I try and enjoy my kids. I'm not

real good at it yet!

I'm thinking about you guys! I hope your ship comes in soon!

[Guest guest]

Dianne,

We are at the point now where we really only go to doctors every couple of

months. I find that I feel much better in between appointment cycles than I do

when we're in the middle of one. I hate hearing anything other than, " Ma'am

this is totally great! " And of course both of my boys are a little different, so

I can be very sensitive in discussions about " normal " kids. I think worrying

about their cognitive ability is the hardest for me too. And sometimes I

wonder why they tell you anything about life expectancy at all. I mean does it

help

anything? They are so often wrong, and then you spend so much time waiting

for the end of your child's life. No parent should have to do that. I mean, we

aren't set up that way. I can't imagine what a blackness that would bring

around. No wonder you panic. I'm sure that some of the amazing people on here

who've suffered a loss can help you maybe find some peace.

I agree with about the trauma. I still freak out in hospitals, to the

point of physical symptoms. 's heart surgery was a terrible experience.

Even though it was 9 months ago, I still have a hard time letting doctors near

him unless I am right there. Which, by the way, we have a sedated BAER today

that I am dreading.

I am actually looking for a counselor now, and may go back on meds myself.

(Let me know how you work all of this through Tricare!) From most of what I have

read, post partum depression can extend well into the first year or beyond,

and therapy AND medication are the most effective treatment. And I think that

for me, I may need some time just to experience the greif that is lingering.

It's kind of a triple whammy, I'm still sad for the life/child we thought we

would have and didn't, and then I'm sad for everything my son has to go through,

and on top of it all, worried if he'll even make it.

Luckily, is at a shore site now, so he's not been deployed for any of

this. But he's still usually not there when I get any news, good or bad. He's

still trying to bond with , and tends to distance himself from all the

medical stuff. I feel pretty alone sometimes too, very similar to when you try

and keep up a cheery deployment front. Does your EFMP have a support group?

They have one here that I think I would go to if wasn't home.

There is something I saw on Oprah the other day. Don't laugh, I'm serious!

This beautiful girl had been terribly burned and disfigured in a car accident.

And she said that she gives herself five minutes a day to be angry and sorry

for herself, but the rest of the time she has to make her life enjoyable or she

may as well have died. That really hit home with me. So, for a few minutes a

day, I hate CHARGE, and I feel like crap. Then I try and enjoy my kids. I'm not

real good at it yet!

I'm thinking about you guys! I hope your ship comes in soon!

[Guest guest]

Dianne,

We are at the point now where we really only go to doctors every couple of

months. I find that I feel much better in between appointment cycles than I do

when we're in the middle of one. I hate hearing anything other than, " Ma'am

this is totally great! " And of course both of my boys are a little different, so

I can be very sensitive in discussions about " normal " kids. I think worrying

about their cognitive ability is the hardest for me too. And sometimes I

wonder why they tell you anything about life expectancy at all. I mean does it

help

anything? They are so often wrong, and then you spend so much time waiting

for the end of your child's life. No parent should have to do that. I mean, we

aren't set up that way. I can't imagine what a blackness that would bring

around. No wonder you panic. I'm sure that some of the amazing people on here

who've suffered a loss can help you maybe find some peace.

I agree with about the trauma. I still freak out in hospitals, to the

point of physical symptoms. 's heart surgery was a terrible experience.

Even though it was 9 months ago, I still have a hard time letting doctors near

him unless I am right there. Which, by the way, we have a sedated BAER today

that I am dreading.

I am actually looking for a counselor now, and may go back on meds myself.

(Let me know how you work all of this through Tricare!) From most of what I have

read, post partum depression can extend well into the first year or beyond,

and therapy AND medication are the most effective treatment. And I think that

for me, I may need some time just to experience the greif that is lingering.

It's kind of a triple whammy, I'm still sad for the life/child we thought we

would have and didn't, and then I'm sad for everything my son has to go through,

and on top of it all, worried if he'll even make it.

Luckily, is at a shore site now, so he's not been deployed for any of

this. But he's still usually not there when I get any news, good or bad. He's

still trying to bond with , and tends to distance himself from all the

medical stuff. I feel pretty alone sometimes too, very similar to when you try

and keep up a cheery deployment front. Does your EFMP have a support group?

They have one here that I think I would go to if wasn't home.

There is something I saw on Oprah the other day. Don't laugh, I'm serious!

This beautiful girl had been terribly burned and disfigured in a car accident.

And she said that she gives herself five minutes a day to be angry and sorry

for herself, but the rest of the time she has to make her life enjoyable or she

may as well have died. That really hit home with me. So, for a few minutes a

day, I hate CHARGE, and I feel like crap. Then I try and enjoy my kids. I'm not

real good at it yet!

I'm thinking about you guys! I hope your ship comes in soon!

[Guest guest]

In a message dated 7/19/2004 6:24:53 AM Pacific Standard Time,

ShKendra@... writes:

But he's still usually not there when I get any news, good or bad. He's

still trying to bond with , and tends to distance himself from all the

medical stuff. I feel pretty alone sometimes too, very similar to when you

try

and keep up a cheery deployment front.

I understand how you feel. goes to as many appointments as he can, but

wants me to deal with all the medical and explain what he needs to know to

him. Even at his own cardiology appointments (I have been to all but one).

Concerning the postpartum, I agree with you. Dianne, you haven't had a

chance to just sit. Since Em was born, you have been going, going, going, and

must

think you are almost gone. Your not though. In addition to Em, you have to

worry about military moves and deployment, as well as her sissy's. You are

hoping so much for Em and it must seem that each appointment dashes those hopes.

Yet, is still here and she knows how much you love her. And so does

everyone else. Be angry, cry, even yell if you must. We are here to listen.

You are doing a great job as mother and military wife. Hang in there! Take a

BIG deep breathe! Talk to someone!!!

Praying for you, Em, her sissy's and her deployed daddy,

Carolyn

Mother of Tanis 2 CHARGE and Denny 3 months

[Guest guest]

In a message dated 7/19/2004 6:24:53 AM Pacific Standard Time,

ShKendra@... writes:

But he's still usually not there when I get any news, good or bad. He's

still trying to bond with , and tends to distance himself from all the

medical stuff. I feel pretty alone sometimes too, very similar to when you

try

and keep up a cheery deployment front.

I understand how you feel. goes to as many appointments as he can, but

wants me to deal with all the medical and explain what he needs to know to

him. Even at his own cardiology appointments (I have been to all but one).

Concerning the postpartum, I agree with you. Dianne, you haven't had a

chance to just sit. Since Em was born, you have been going, going, going, and

must

think you are almost gone. Your not though. In addition to Em, you have to

worry about military moves and deployment, as well as her sissy's. You are

hoping so much for Em and it must seem that each appointment dashes those hopes.

Yet, is still here and she knows how much you love her. And so does

everyone else. Be angry, cry, even yell if you must. We are here to listen.

You are doing a great job as mother and military wife. Hang in there! Take a

BIG deep breathe! Talk to someone!!!

Praying for you, Em, her sissy's and her deployed daddy,

Carolyn

Mother of Tanis 2 CHARGE and Denny 3 months

[Guest guest]

In a message dated 7/19/2004 6:24:53 AM Pacific Standard Time,

ShKendra@... writes:

But he's still usually not there when I get any news, good or bad. He's

still trying to bond with , and tends to distance himself from all the

medical stuff. I feel pretty alone sometimes too, very similar to when you

try

and keep up a cheery deployment front.

I understand how you feel. goes to as many appointments as he can, but

wants me to deal with all the medical and explain what he needs to know to

him. Even at his own cardiology appointments (I have been to all but one).

Concerning the postpartum, I agree with you. Dianne, you haven't had a

chance to just sit. Since Em was born, you have been going, going, going, and

must

think you are almost gone. Your not though. In addition to Em, you have to

worry about military moves and deployment, as well as her sissy's. You are

hoping so much for Em and it must seem that each appointment dashes those hopes.

Yet, is still here and she knows how much you love her. And so does

everyone else. Be angry, cry, even yell if you must. We are here to listen.

You are doing a great job as mother and military wife. Hang in there! Take a

BIG deep breathe! Talk to someone!!!

Praying for you, Em, her sissy's and her deployed daddy,

Carolyn

Mother of Tanis 2 CHARGE and Denny 3 months

[Guest guest]

,

Where are you stationed? We are at 32nd Street Naval Station, San Diego.

is on shore duty at Admin due to his own undiagnosed heart condition

(being seen at Balboa). We PCS'd in May and have just started the rounds of

doctors for our 2 year old Tanis (CHARGE, Tetralogy of Fallot, developmental

delays,

hearing loss (found out Friday--reevaluation in 3 months for conclusive

testing), as well as seems to be a zillion referrals for speech/language and

doctors).

Carolyn

mother of Tanis 2 CHARGE and Denny 3 months

[Guest guest]

,

Where are you stationed? We are at 32nd Street Naval Station, San Diego.

is on shore duty at Admin due to his own undiagnosed heart condition

(being seen at Balboa). We PCS'd in May and have just started the rounds of

doctors for our 2 year old Tanis (CHARGE, Tetralogy of Fallot, developmental

delays,

hearing loss (found out Friday--reevaluation in 3 months for conclusive

testing), as well as seems to be a zillion referrals for speech/language and

doctors).

Carolyn

mother of Tanis 2 CHARGE and Denny 3 months

[Guest guest]

,

Where are you stationed? We are at 32nd Street Naval Station, San Diego.

is on shore duty at Admin due to his own undiagnosed heart condition

(being seen at Balboa). We PCS'd in May and have just started the rounds of

doctors for our 2 year old Tanis (CHARGE, Tetralogy of Fallot, developmental

delays,

hearing loss (found out Friday--reevaluation in 3 months for conclusive

testing), as well as seems to be a zillion referrals for speech/language and

doctors).

Carolyn

mother of Tanis 2 CHARGE and Denny 3 months

[Guest guest]

Dianne-

Going to a therapist is a great idea. You are justified in your

feelings. While they may be " normal " for what you're going through, you

need to do get some help for them. I am taking anti-depressants and I

think there are several others on the list too. I took them before

Aubrie because we have a family history of depression. But I was off

them when I was pregnant and then didn't think I needed them after her

birth. Sure, I cried alot and was sad, but I had reason too. It wasn't

like the depression I had before with no basis. Well, finally I got

back on meds and it's made a big difference.

I've also been to counseling within the past couple years. This gal was

a good match. We didn't talk so much about Aubrie's stuff because I had

other issues on my mind. But she really helped me get past them and

think clearly.

A counselor and perhaps medication will help you to better be able to

cope with a very difficult situation. It is never easy to get bad news

about your child -- even if it's not totally " news " . Being the cheerful

strong one 24/7 for your girls with no spouse to give relief -- well,

that's just about as hard as it gets. So know that you are not crazy or

weak. You are dealing with more than the average person can manage.

Take care of yourself. Vent here as much as you need to. Sometimes I

find great relief after simply expressing something. And let us know

how your counseling session goes.

Hugs-

Michele W

Aubrie's mom

[Guest guest]

Dianne-

Going to a therapist is a great idea. You are justified in your

feelings. While they may be " normal " for what you're going through, you

need to do get some help for them. I am taking anti-depressants and I

think there are several others on the list too. I took them before

Aubrie because we have a family history of depression. But I was off

them when I was pregnant and then didn't think I needed them after her

birth. Sure, I cried alot and was sad, but I had reason too. It wasn't

like the depression I had before with no basis. Well, finally I got

back on meds and it's made a big difference.

I've also been to counseling within the past couple years. This gal was

a good match. We didn't talk so much about Aubrie's stuff because I had

other issues on my mind. But she really helped me get past them and

think clearly.

A counselor and perhaps medication will help you to better be able to

cope with a very difficult situation. It is never easy to get bad news

about your child -- even if it's not totally " news " . Being the cheerful

strong one 24/7 for your girls with no spouse to give relief -- well,

that's just about as hard as it gets. So know that you are not crazy or

weak. You are dealing with more than the average person can manage.

Take care of yourself. Vent here as much as you need to. Sometimes I

find great relief after simply expressing something. And let us know

how your counseling session goes.

Hugs-

Michele W

Aubrie's mom

[Guest guest]

-

You said that all so beautifully! I love the Oprah story. I will

remember that. It makes wonderful sense. Attitude is everthing. I'm

convinced that the difference between those who succeed in spite of

adversity and those that fail in spite of golden circumstances is

attitude. But it's hard to keep a great attitude 24/7. Scheduling 5

min of negativity is a good way to deal with it. I love it!

Michele W

Aubrie's mom 6 yrs

[Guest guest]

-

You said that all so beautifully! I love the Oprah story. I will

remember that. It makes wonderful sense. Attitude is everthing. I'm

convinced that the difference between those who succeed in spite of

adversity and those that fail in spite of golden circumstances is

attitude. But it's hard to keep a great attitude 24/7. Scheduling 5

min of negativity is a good way to deal with it. I love it!

Michele W

Aubrie's mom 6 yrs

[Guest guest]

-

You said that all so beautifully! I love the Oprah story. I will

remember that. It makes wonderful sense. Attitude is everthing. I'm

convinced that the difference between those who succeed in spite of

adversity and those that fail in spite of golden circumstances is

attitude. But it's hard to keep a great attitude 24/7. Scheduling 5

min of negativity is a good way to deal with it. I love it!

Michele W

Aubrie's mom 6 yrs

[Guest guest]

Dianne-

I think the feeling of being overwhelmed, panicked and paralyzed with grief

is normal - at least for me ) However, my reaction came much later.

The night of 's birth, I was in the non-maternity section of the OB

floor when the pediatric surgeon and hospital pediatrician came in to tell

me about the placement of the gastrostomy tube and the tracheo-esophageal

fistula, esophageal atresia, the ramifications of this condition and all the

possible outcomes of surgery. Immediately after they left, I remember my

husband standing beside my bed, giving me a hug, and I experienced a strong

feeling of falling backward into a pit as a yelp of grief started to escape

my lips - and suddenly it was all swallowed back - and seemed gone. That is

what I needed to do to deal with 's situation - our situation.

In the years that followed my husband and I were tireless in our optimism

and appreciation of every one of 's accomplishments, recoveries from

setbacks or lack of setbacks. People marveled at " how we did it " and I was

very uncomfortable being perceived as super-human or worse yet - a martyr. I

only felt the joy and gratitude of the miracle and beauty of every day of

life with , and I couldn't imagine any other possible feeling. Everyday

was a great day. " Isn't it great he can breath easier today? " - and I would

be so genuinely happy - not experiencing at all the vulnerability of such

joy.

When our second son was born, for the whole first year every simple thing

Elliot acquired easily - breathing, eating, motor achievements was greeted

with joy and a bittersweetness - " oh, this is what is could have looked like

for . " It was our first time to acknowledge the things did not

experience - the ease and fluency of life and breath - but this did not

overwhelm or incapacitate. It just made us more joyful and appreciative.

When was nine, he decided to run for vice president of his elementary

school, and he won. He also went to Space Camp in Huntsville Alabama and

was awarded the " Right Stuff Award. " I cried in gulps and heaves. I could

feel that some part of me had held my breath all these years and those fears

being released. I could feel that I always accepted him as he was, yet I

was also tremendously grateful that he was coming so far. It was my first

experience of relief so deeply felt that it looked like sadness - because I

was releasing a fear that I had already accepted - sort of the counterpart

to that sinking feeling of receiving medical or official confirmation of

something I already suspected or knew in my heart. I then became acquainted

with the idea that this was Post Traumatic Stress, and I was grateful to be

done with it.

When graduated (culminated) from sixth grade three years ago for two

hours I was sobbing as though someone had died. It was easy enough for me

to understand that this was my grief unprocessed from when he was born. Now

that he had come so far I could safely release the rest of my fears that I

swallowed whole that day. And I realized that what I felt two years prior

was only a small release. And I was grateful to be done with it.

I really thought I was done. Wow, was I wrong.

Last year when he graduated (promoted) from middle school I though nothing

of it. Middle school was only two years. Then I went into a period of deep

depression which in hindsight lasted ten weeks. I was anxious, cold,

sweaty, my heart palpitating, feeling like I had just been called to the

principal's office, fearful of the phone, of getting mail of stepping

outside. Everything I looked at felt like it could be taken away. Trying

to count my blessings or find simple joys only had me feel like I was

gripping tightly onto sand and it was only slipping through my fingers. My

husband and my father's companies were both having tremendous difficulties

at the time, and I thought perhaps my anxiety was about that. But

throughout it, I had recurrent images of that moment in the non-maternity

section of the ob floor that first night - that moment as the grief started

to escape my lips and then was swallowed. The moment I felt myself falling

back and then was suddenly back in the bed.

I thought that I was ridiculous. No financial situation could possibly be

as serious as having the life of one's child uncertain. But the image kept

replaying.

Then I got it. The image was replaying because that is what I was

experiencing. It was yet more unprocessed grief. And this grief was

tremendous. The first stage was the terrifying pure anxiety - as though my

very life were in danger - and the single recurring memory - increasing in

its scope over a few weeks. The second stage was my identifying that this

was unprocessed grief specific to the conditions of 's birth and my

experience of it. The third stage was me exploring that avenue, not having

any more detail of why the grief was there or from which events it was

built, but to simply be awestruck by the massive scope of it, and talking

about it in sobs to my closest friends who were pretty dumbstruck and

loving. The fourth stage was as sense of losing down the one fear while

acknowledging the possibility of a more intense fear. As could make out the

shape of this grief giving me the idea that I would rise above it, I had a

more terribly frightening notion that I had no idea if this was the end of

it, what more would look like and if I would be able to survive another

possibly more intense release or re-discovery of this unprocessed grief at

some unknown future time in my life. I thought I was done two years ago,

clearly I wasn't. The intensity of this experience was starting to ebb, and

yet I was intensely vulnerable and fearful - what if there is more? The

fifth stage has occurred gradually over the last year. The intensity faded,

and then suddenly daily life just came into focus full of daily joys of

gratitude and blessing, and the grief no longer called attention to itself.

I was able to experience the gratitude of having, giving and receiving. I

was no longer terrified of another experience nor having the memory haunt

me. I know I am past it now because when I talk about it I am calm and at

peace - not feeling restimulated at all. I talk about it as a simple fact -

not with a fearful grip in my heart.

I am still close enough to feel a small amount of trepidation that I got

through the summer last year at all. It's not as abstract as the physical

experience of childbirth seems now. And I now know that if I ever have

feelings like that again I might consider seeking help - I would have

definitely benefited from that kind of support -. The support of my friends

and family was incredible - but truly only two of my friends who have face

their own intense challenges in their lives were able to offer me support

that was not covered in fear. They had the certainty that I was still

myself and that I would come through. They were not afraid of the grief and

fear I was showing them, and were able to embrace it and love me with a

compassion that let me know I was still whole and would continue to be

whole. For others of my friends, they could barely look at me, for I was

showing them a possibility that was too frightening for them - just like the

way seemed to some of our friends when he was little and so

vulnerable - and still they let me know how much they cares and worried for

me. But being afraid, sad and terrified, and then seeing fear in the eyes

of your friend as they look at you is loving but not exactly comforting. I

would love to take that burden and fear off my friends - because if I have

to go through this again - seeing how the last three times have increased in

intensity logarithmically - I think someone should hang an A-frame sign on

me saying " Warning: Only Professionals Should Approach. "

I hope this helped. I know it helps me to share it )

take good care,

yuka

[Guest guest]

Dianne-

I think the feeling of being overwhelmed, panicked and paralyzed with grief

is normal - at least for me ) However, my reaction came much later.

The night of 's birth, I was in the non-maternity section of the OB

floor when the pediatric surgeon and hospital pediatrician came in to tell

me about the placement of the gastrostomy tube and the tracheo-esophageal

fistula, esophageal atresia, the ramifications of this condition and all the

possible outcomes of surgery. Immediately after they left, I remember my

husband standing beside my bed, giving me a hug, and I experienced a strong

feeling of falling backward into a pit as a yelp of grief started to escape

my lips - and suddenly it was all swallowed back - and seemed gone. That is

what I needed to do to deal with 's situation - our situation.

In the years that followed my husband and I were tireless in our optimism

and appreciation of every one of 's accomplishments, recoveries from

setbacks or lack of setbacks. People marveled at " how we did it " and I was

very uncomfortable being perceived as super-human or worse yet - a martyr. I

only felt the joy and gratitude of the miracle and beauty of every day of

life with , and I couldn't imagine any other possible feeling. Everyday

was a great day. " Isn't it great he can breath easier today? " - and I would

be so genuinely happy - not experiencing at all the vulnerability of such

joy.

When our second son was born, for the whole first year every simple thing

Elliot acquired easily - breathing, eating, motor achievements was greeted

with joy and a bittersweetness - " oh, this is what is could have looked like

for . " It was our first time to acknowledge the things did not

experience - the ease and fluency of life and breath - but this did not

overwhelm or incapacitate. It just made us more joyful and appreciative.

When was nine, he decided to run for vice president of his elementary

school, and he won. He also went to Space Camp in Huntsville Alabama and

was awarded the " Right Stuff Award. " I cried in gulps and heaves. I could

feel that some part of me had held my breath all these years and those fears

being released. I could feel that I always accepted him as he was, yet I

was also tremendously grateful that he was coming so far. It was my first

experience of relief so deeply felt that it looked like sadness - because I

was releasing a fear that I had already accepted - sort of the counterpart

to that sinking feeling of receiving medical or official confirmation of

something I already suspected or knew in my heart. I then became acquainted

with the idea that this was Post Traumatic Stress, and I was grateful to be

done with it.

When graduated (culminated) from sixth grade three years ago for two

hours I was sobbing as though someone had died. It was easy enough for me

to understand that this was my grief unprocessed from when he was born. Now

that he had come so far I could safely release the rest of my fears that I

swallowed whole that day. And I realized that what I felt two years prior

was only a small release. And I was grateful to be done with it.

I really thought I was done. Wow, was I wrong.

Last year when he graduated (promoted) from middle school I though nothing

of it. Middle school was only two years. Then I went into a period of deep

depression which in hindsight lasted ten weeks. I was anxious, cold,

sweaty, my heart palpitating, feeling like I had just been called to the

principal's office, fearful of the phone, of getting mail of stepping

outside. Everything I looked at felt like it could be taken away. Trying

to count my blessings or find simple joys only had me feel like I was

gripping tightly onto sand and it was only slipping through my fingers. My

husband and my father's companies were both having tremendous difficulties

at the time, and I thought perhaps my anxiety was about that. But

throughout it, I had recurrent images of that moment in the non-maternity

section of the ob floor that first night - that moment as the grief started

to escape my lips and then was swallowed. The moment I felt myself falling

back and then was suddenly back in the bed.

I thought that I was ridiculous. No financial situation could possibly be

as serious as having the life of one's child uncertain. But the image kept

replaying.

Then I got it. The image was replaying because that is what I was

experiencing. It was yet more unprocessed grief. And this grief was

tremendous. The first stage was the terrifying pure anxiety - as though my

very life were in danger - and the single recurring memory - increasing in

its scope over a few weeks. The second stage was my identifying that this

was unprocessed grief specific to the conditions of 's birth and my

experience of it. The third stage was me exploring that avenue, not having

any more detail of why the grief was there or from which events it was

built, but to simply be awestruck by the massive scope of it, and talking

about it in sobs to my closest friends who were pretty dumbstruck and

loving. The fourth stage was as sense of losing down the one fear while

acknowledging the possibility of a more intense fear. As could make out the

shape of this grief giving me the idea that I would rise above it, I had a

more terribly frightening notion that I had no idea if this was the end of

it, what more would look like and if I would be able to survive another

possibly more intense release or re-discovery of this unprocessed grief at

some unknown future time in my life. I thought I was done two years ago,

clearly I wasn't. The intensity of this experience was starting to ebb, and

yet I was intensely vulnerable and fearful - what if there is more? The

fifth stage has occurred gradually over the last year. The intensity faded,

and then suddenly daily life just came into focus full of daily joys of

gratitude and blessing, and the grief no longer called attention to itself.

I was able to experience the gratitude of having, giving and receiving. I

was no longer terrified of another experience nor having the memory haunt

me. I know I am past it now because when I talk about it I am calm and at

peace - not feeling restimulated at all. I talk about it as a simple fact -

not with a fearful grip in my heart.

I am still close enough to feel a small amount of trepidation that I got

through the summer last year at all. It's not as abstract as the physical

experience of childbirth seems now. And I now know that if I ever have

feelings like that again I might consider seeking help - I would have

definitely benefited from that kind of support -. The support of my friends

and family was incredible - but truly only two of my friends who have face

their own intense challenges in their lives were able to offer me support

that was not covered in fear. They had the certainty that I was still

myself and that I would come through. They were not afraid of the grief and

fear I was showing them, and were able to embrace it and love me with a

compassion that let me know I was still whole and would continue to be

whole. For others of my friends, they could barely look at me, for I was

showing them a possibility that was too frightening for them - just like the

way seemed to some of our friends when he was little and so

vulnerable - and still they let me know how much they cares and worried for

me. But being afraid, sad and terrified, and then seeing fear in the eyes

of your friend as they look at you is loving but not exactly comforting. I

would love to take that burden and fear off my friends - because if I have

to go through this again - seeing how the last three times have increased in

intensity logarithmically - I think someone should hang an A-frame sign on

me saying " Warning: Only Professionals Should Approach. "

I hope this helped. I know it helps me to share it )

take good care,

yuka

[Guest guest]

Dianne-

I think the feeling of being overwhelmed, panicked and paralyzed with grief

is normal - at least for me ) However, my reaction came much later.

The night of 's birth, I was in the non-maternity section of the OB

floor when the pediatric surgeon and hospital pediatrician came in to tell

me about the placement of the gastrostomy tube and the tracheo-esophageal

fistula, esophageal atresia, the ramifications of this condition and all the

possible outcomes of surgery. Immediately after they left, I remember my

husband standing beside my bed, giving me a hug, and I experienced a strong

feeling of falling backward into a pit as a yelp of grief started to escape

my lips - and suddenly it was all swallowed back - and seemed gone. That is

what I needed to do to deal with 's situation - our situation.

In the years that followed my husband and I were tireless in our optimism

and appreciation of every one of 's accomplishments, recoveries from

setbacks or lack of setbacks. People marveled at " how we did it " and I was

very uncomfortable being perceived as super-human or worse yet - a martyr. I

only felt the joy and gratitude of the miracle and beauty of every day of

life with , and I couldn't imagine any other possible feeling. Everyday

was a great day. " Isn't it great he can breath easier today? " - and I would

be so genuinely happy - not experiencing at all the vulnerability of such

joy.

When our second son was born, for the whole first year every simple thing

Elliot acquired easily - breathing, eating, motor achievements was greeted

with joy and a bittersweetness - " oh, this is what is could have looked like

for . " It was our first time to acknowledge the things did not

experience - the ease and fluency of life and breath - but this did not

overwhelm or incapacitate. It just made us more joyful and appreciative.

When was nine, he decided to run for vice president of his elementary

school, and he won. He also went to Space Camp in Huntsville Alabama and

was awarded the " Right Stuff Award. " I cried in gulps and heaves. I could

feel that some part of me had held my breath all these years and those fears

being released. I could feel that I always accepted him as he was, yet I

was also tremendously grateful that he was coming so far. It was my first

experience of relief so deeply felt that it looked like sadness - because I

was releasing a fear that I had already accepted - sort of the counterpart

to that sinking feeling of receiving medical or official confirmation of

something I already suspected or knew in my heart. I then became acquainted

with the idea that this was Post Traumatic Stress, and I was grateful to be

done with it.

When graduated (culminated) from sixth grade three years ago for two

hours I was sobbing as though someone had died. It was easy enough for me

to understand that this was my grief unprocessed from when he was born. Now

that he had come so far I could safely release the rest of my fears that I

swallowed whole that day. And I realized that what I felt two years prior

was only a small release. And I was grateful to be done with it.

I really thought I was done. Wow, was I wrong.

Last year when he graduated (promoted) from middle school I though nothing

of it. Middle school was only two years. Then I went into a period of deep

depression which in hindsight lasted ten weeks. I was anxious, cold,

sweaty, my heart palpitating, feeling like I had just been called to the

principal's office, fearful of the phone, of getting mail of stepping

outside. Everything I looked at felt like it could be taken away. Trying

to count my blessings or find simple joys only had me feel like I was

gripping tightly onto sand and it was only slipping through my fingers. My

husband and my father's companies were both having tremendous difficulties

at the time, and I thought perhaps my anxiety was about that. But

throughout it, I had recurrent images of that moment in the non-maternity

section of the ob floor that first night - that moment as the grief started

to escape my lips and then was swallowed. The moment I felt myself falling

back and then was suddenly back in the bed.

I thought that I was ridiculous. No financial situation could possibly be

as serious as having the life of one's child uncertain. But the image kept

replaying.

Then I got it. The image was replaying because that is what I was

experiencing. It was yet more unprocessed grief. And this grief was

tremendous. The first stage was the terrifying pure anxiety - as though my

very life were in danger - and the single recurring memory - increasing in

its scope over a few weeks. The second stage was my identifying that this

was unprocessed grief specific to the conditions of 's birth and my

experience of it. The third stage was me exploring that avenue, not having

any more detail of why the grief was there or from which events it was

built, but to simply be awestruck by the massive scope of it, and talking

about it in sobs to my closest friends who were pretty dumbstruck and

loving. The fourth stage was as sense of losing down the one fear while

acknowledging the possibility of a more intense fear. As could make out the

shape of this grief giving me the idea that I would rise above it, I had a

more terribly frightening notion that I had no idea if this was the end of

it, what more would look like and if I would be able to survive another

possibly more intense release or re-discovery of this unprocessed grief at

some unknown future time in my life. I thought I was done two years ago,

clearly I wasn't. The intensity of this experience was starting to ebb, and

yet I was intensely vulnerable and fearful - what if there is more? The

fifth stage has occurred gradually over the last year. The intensity faded,

and then suddenly daily life just came into focus full of daily joys of

gratitude and blessing, and the grief no longer called attention to itself.

I was able to experience the gratitude of having, giving and receiving. I

was no longer terrified of another experience nor having the memory haunt

me. I know I am past it now because when I talk about it I am calm and at

peace - not feeling restimulated at all. I talk about it as a simple fact -

not with a fearful grip in my heart.

I am still close enough to feel a small amount of trepidation that I got

through the summer last year at all. It's not as abstract as the physical

experience of childbirth seems now. And I now know that if I ever have

feelings like that again I might consider seeking help - I would have

definitely benefited from that kind of support -. The support of my friends

and family was incredible - but truly only two of my friends who have face

their own intense challenges in their lives were able to offer me support

that was not covered in fear. They had the certainty that I was still

myself and that I would come through. They were not afraid of the grief and

fear I was showing them, and were able to embrace it and love me with a

compassion that let me know I was still whole and would continue to be

whole. For others of my friends, they could barely look at me, for I was

showing them a possibility that was too frightening for them - just like the

way seemed to some of our friends when he was little and so

vulnerable - and still they let me know how much they cares and worried for

me. But being afraid, sad and terrified, and then seeing fear in the eyes

of your friend as they look at you is loving but not exactly comforting. I

would love to take that burden and fear off my friends - because if I have

to go through this again - seeing how the last three times have increased in

intensity logarithmically - I think someone should hang an A-frame sign on

me saying " Warning: Only Professionals Should Approach. "

I hope this helped. I know it helps me to share it )

take good care,

yuka

[Guest guest]

Yuka,

Thank you so much for what you wrote. My youngest is 3 months old and is

already in 6-9 months clothes and the size Tanis was at one year plus. Every

day

I thank God he is so healthy and fine and growing and progressing. Every day

I think, Tanis was leaving the hospital, having surgery, relapse...at this

age, this weight, this height, this development. I am so scared of what is to

come with Tanis (2, CHARGE, delays, evaluations and testing over the next 3

months) and how Denny won't have to go through any of this but I will be holding

my breathe lest anything happens.

You have given the " perfect prescription " and " warning label " of what is yet

to come. The doctor's didn't know until Tanis was born (36 weeks) that he had

Tetralogy of Fallot and other bone deficiencies or anything else. They

whisked him out of the room and soon after Children's Hospital came for him. I

can

remember crying then, and as I stood by his bed in PICU weeks later knowing

that if they didn't do surgery real soon, he would die. Sometimes, especially

now that we have Denny, I start crying because Tanis still is so far behind in

language and development delays/processing. Denny won't be, he's already

doing all he should and trying more.

My husband doesn't understand the breakdowns, because " I've been so strong

and helped get all of us through this. " Fortunately, he usually lends a

shoulder for tears and humor to make me smile. That day was the last I saw him

cry.

He refuses to cry now. Maybe I should give a copy of your letter to my

husband's cardiologist and have him evaluate for Post Traumatic Stress

Syndrome.

Thank you again. I know there are days I want to break down so much, but

keep going because there is nothing else I can do. Thank you for the examples

of

your sons. It will help, especially in the next few months, as Denny " meets

his goals " and we set new goals for Tanis.

Carolyn

Mother of Tanis 2 CHARGE and Denny 3 months (already 13 1/2 pounds and 27 " +

long

[Guest guest]

Yuka,

Thank you so much for what you wrote. My youngest is 3 months old and is

already in 6-9 months clothes and the size Tanis was at one year plus. Every

day

I thank God he is so healthy and fine and growing and progressing. Every day

I think, Tanis was leaving the hospital, having surgery, relapse...at this

age, this weight, this height, this development. I am so scared of what is to

come with Tanis (2, CHARGE, delays, evaluations and testing over the next 3

months) and how Denny won't have to go through any of this but I will be holding

my breathe lest anything happens.

You have given the " perfect prescription " and " warning label " of what is yet

to come. The doctor's didn't know until Tanis was born (36 weeks) that he had

Tetralogy of Fallot and other bone deficiencies or anything else. They

whisked him out of the room and soon after Children's Hospital came for him. I

can

remember crying then, and as I stood by his bed in PICU weeks later knowing

that if they didn't do surgery real soon, he would die. Sometimes, especially

now that we have Denny, I start crying because Tanis still is so far behind in

language and development delays/processing. Denny won't be, he's already

doing all he should and trying more.

My husband doesn't understand the breakdowns, because " I've been so strong

and helped get all of us through this. " Fortunately, he usually lends a

shoulder for tears and humor to make me smile. That day was the last I saw him

cry.

He refuses to cry now. Maybe I should give a copy of your letter to my

husband's cardiologist and have him evaluate for Post Traumatic Stress

Syndrome.

Thank you again. I know there are days I want to break down so much, but

keep going because there is nothing else I can do. Thank you for the examples

of

your sons. It will help, especially in the next few months, as Denny " meets

his goals " and we set new goals for Tanis.

Carolyn

Mother of Tanis 2 CHARGE and Denny 3 months (already 13 1/2 pounds and 27 " +

long

[Guest guest]

Yuka,

Thank you so much for what you wrote. My youngest is 3 months old and is

already in 6-9 months clothes and the size Tanis was at one year plus. Every

day

I thank God he is so healthy and fine and growing and progressing. Every day

I think, Tanis was leaving the hospital, having surgery, relapse...at this

age, this weight, this height, this development. I am so scared of what is to

come with Tanis (2, CHARGE, delays, evaluations and testing over the next 3

months) and how Denny won't have to go through any of this but I will be holding

my breathe lest anything happens.

You have given the " perfect prescription " and " warning label " of what is yet

to come. The doctor's didn't know until Tanis was born (36 weeks) that he had

Tetralogy of Fallot and other bone deficiencies or anything else. They

whisked him out of the room and soon after Children's Hospital came for him. I

can

remember crying then, and as I stood by his bed in PICU weeks later knowing

that if they didn't do surgery real soon, he would die. Sometimes, especially

now that we have Denny, I start crying because Tanis still is so far behind in

language and development delays/processing. Denny won't be, he's already

doing all he should and trying more.

My husband doesn't understand the breakdowns, because " I've been so strong

and helped get all of us through this. " Fortunately, he usually lends a

shoulder for tears and humor to make me smile. That day was the last I saw him

cry.

He refuses to cry now. Maybe I should give a copy of your letter to my

husband's cardiologist and have him evaluate for Post Traumatic Stress

Syndrome.

Thank you again. I know there are days I want to break down so much, but

keep going because there is nothing else I can do. Thank you for the examples

of

your sons. It will help, especially in the next few months, as Denny " meets

his goals " and we set new goals for Tanis.

Carolyn

Mother of Tanis 2 CHARGE and Denny 3 months (already 13 1/2 pounds and 27 " +

long

[Guest guest]

Diane, PLEASE don't feel off the wall or abnormal in any way. Almost ALL of

us (ok maybe all) have had these feelings of anxiety, depression, etc facing

the challenges we go through. It's called STRESS. Nobody other than a

robot wouldn't react with strong physical, emotional and scary mind stuff.

Don't feel guilty getting whatever help you need. I wish I had, I see now I

was kinda a zombie earlier on, and just tried to tough it out, with an

occasional valium + go to bed at 7 p.m. escape to stay sane/alive. It gets

better as they mature and accomplish new things. They advance and grow just

like all children, just on a slower time table. Good luck and treat

yourself to a massage as often as you can possibly afford!! love barbra

mousouris

[Guest guest]

Diane, PLEASE don't feel off the wall or abnormal in any way. Almost ALL of

us (ok maybe all) have had these feelings of anxiety, depression, etc facing

the challenges we go through. It's called STRESS. Nobody other than a

robot wouldn't react with strong physical, emotional and scary mind stuff.

Don't feel guilty getting whatever help you need. I wish I had, I see now I

was kinda a zombie earlier on, and just tried to tough it out, with an

occasional valium + go to bed at 7 p.m. escape to stay sane/alive. It gets

better as they mature and accomplish new things. They advance and grow just

like all children, just on a slower time table. Good luck and treat

yourself to a massage as often as you can possibly afford!! love barbra

mousouris

[Guest guest]

Diane, PLEASE don't feel off the wall or abnormal in any way. Almost ALL of

us (ok maybe all) have had these feelings of anxiety, depression, etc facing

the challenges we go through. It's called STRESS. Nobody other than a

robot wouldn't react with strong physical, emotional and scary mind stuff.

Don't feel guilty getting whatever help you need. I wish I had, I see now I

was kinda a zombie earlier on, and just tried to tough it out, with an

occasional valium + go to bed at 7 p.m. escape to stay sane/alive. It gets

better as they mature and accomplish new things. They advance and grow just

like all children, just on a slower time table. Good luck and treat

yourself to a massage as often as you can possibly afford!! love barbra

mousouris

[Guest guest]

Carolyn,

We're in Fort Meade, at the NSA, in land right now. We just moved here

from Norfolk, VA in March. has ToF too!

[Guest guest]

Yuka-

You are so insightful! I could have cried reading your post. You took

me right through the process with you. It's amazing how each of us

handles these traumas differently. I had not thought of what we go

through as leading to Post Traumatic Stress Syndrome, but now I can see

how that might be. I sure did my share of grieving in the first years.

It still comes back to haunt me ocassionally, but I think I got the

worst of it out right from the start. Let's hope :-) I still get

twangs of fear and sadness, but it's not overwhelming anymore. The

overwhelming feelings now are just that -- overwhelmed -- with all the

appts, the time it takes to stay on top of everything -- fear that I

won't be able to keep up or that I won't do a good job, etc.

Oh well-- I'm not in a time or place this afternoon to delve into it

deeply...

Michele w

Aubrie's mom 6 yrs