Re: Continual Mindgame-'s Mom

[Guest guest]

Dearest " Jozann " ...Thank you for putting so honestly, so eloquently what so

many of us feel ... it will get better... the crazy, irrational guilt

part...really.

You will be an even more wonderful parent for allowing yourself to

acknowledge the mourning that goes along with discovering we are vulnerable as

are our

kids. It is very tough. But you will be OK. You are too in touch (hate

that psychobabble term...forgive) not to be just AOK and therefore your

daughter will be too.

In the meanwhile, vent away, girl...this is the place to do it and you speak

for so many of us.

Hugs,

randee

[Guest guest]

Jozann,

I am sorry you are going thru such a tough time. My daughter is going

to be 1 year in November, and I was devastated when the diagnosis of

the tethered cord came. She was asymptomatic and every doctor said

that she was the mildest case of tethered cord known to humans (or

something like that).

We had the surgery , she did great. She is now walking, and talking.

But, I put her thru a microscope and found that one calf is slightly

different size (diameter) than other. I pulled out the measuring tape,

and measured and found a less than half cm difference. Enough to drive

me crazy. I did cyber therapy too, and wrote to a whole lot of people

and groups about my fears. I still dont know what her leg differences

mean, it is so slight , can it just be normal? Ive had 2 physical

therapists evaluate her, and am going to take her to one developmental

specialist. Well, her ankles pronates a little, maybe her right leg

has more tone, instead of left leg having less tone - all theories.

The truth is we just have to wait and see. We can do some stretching,

and careful watching, but we will not know for sure now.

My poor baby has started taking some steps, and while taking out the

camcorder, i am secretly checking out her gait. Is she putting more

weight on one leg? Is her right shoulder lower than left? Why is she

curling her toes? Can I not just enjoy her baby walk?

And then I feel that her diaper is not heavy enough some day and start

worrying about her bladder. Or she goes poopy too many times, or too

less times...you get the picture!

I read this group, and wonder if I should have done the surgery or not

because her lipoma was just a strand, and it was so small and the

tether didnt include nerves, and she was asymptomatic. We went with

the doctor who did the surgery in the least invasive manner, but he

also cut the filum even though there was no fatty filum. He said that

it was right within reach, and if it had a problem he would have to go

in again another time, so why not just cut it. We sent it to

pathology, and it came back as just fine, no problem with the filum.

But he cut it. Can it cause more tether? I know they say chances are

less with a filum, but he did it when it wasnt even necessary. So, he

removed the lipoma and the filum. Did he overdo it? There is

absolutely no way for me to know.

For your information, I took all the folic acid required, even before

pregnancy. I took 800mg (400 is recommended, but my prenatal had 800).

About coffee, I dont even think that is necessarily true. In india

where I come from pregnant ladies always drink coffee. coffee is a big

thing there. When my mom was here during my pregnancy, every time I

complained about being tired, she would offer me coffee. And no, I

didnt drink coffee during my pregnancy. I, my sister, my cousins, my

whole generation was born to coffee drinking moms and all of us are

totally fine. I did EVERYTHING right during my pregnancy - started

prenatals before becoming pregnant, no hot tubs or spas, no coffee,no

alcohol, no flying, no xrays, moderate exercise, lots of water etc. I

was 33 when Riya was born, so while not really young, not very old

either. My AFPs came back fantastic. So, yeah, I did everything right

and my daughter still had tethered cord. Dont beat yourself up.

I am finally getting to terms that there is a lot in this world that I

have absolutely no control of. My daughter is special, and she will do

her best with what she has been endowed with, and I will make sure

that she will get the best chance at having all her physical and

mental faculties work at her peak. Now I just want to enjoy my baby

as she is growing too fast. She senses when I am tensed, and she is

not as happy when I am tense or worried or always checking her out.

And really, if she didnt have the tethered cord diagnosis, I would

have thought she was doing perfectly fine and not noticed any of the

above. I just have to hope for the best, and worry about things as and

if they come along. It is not easy, but I am dealing a little bit

better than before, for my daughter's sake.

You are not alone, I think every mom goes through this phase. Feel

free to write to me or vent, because I have been called

" over-reacting " , " worry-worm " , " cant enjoy anything you have " by

everyone including (and mainly) my parents, husband, pediatrician and

neurosurgeon.

Hope your little one is doing okay. Does she have any symptoms that

you are watching for, or is she asymptomatic?

Take care, Abby.

During times like this, I really wish I had more faith in god than

what I have. But I am what I am, very scientific in nature, and it is

hard for me to not feel responsible, and believe that someone else can

take care of it for me. But I wish I could think that way because it

would be so much easier.

>

> Please feel free to ignore my posts. I think, when I'm having a hard

> time I turn here. Its cyber-therapy for me.

>

> I just had to follow up my last post with this. First thank you

> everyone for the positive support and feedback. I realize I'm naive

> and truly the only way for me to stay sane is to assume that she is

> going to be that lucky person that is untethered and never has

> another day of problem.

>

> Here's what I'm finding is so difficult to handle, before having the

> surgery I didn't feel like it was my fault. I had read some posts

> that stated how guilty some parents felt and I didn't get it. I just

> thought what an awful diagnosis, why her/why her/her. I felt sorry

> for us as a family and for her struggles but never took that guilt

> role.

>

> Now, post surgery, it seems I can't escape the guilt I feel. I'm

> constantly hearing about Folic Acid intake. Could that be a factor?

> I was so sick for the first 12 weeks I threw everytime I took the

> pill, heck I threw up everything no matter what it was. I was

> horrible at taking it, its a huge pill/it would stick in my throat

> and I'd gag. I did take it but not as much as I should. Now...I

> feel tremendous guilt. If I could only turn back the clock, I would

> have taken that damn pill no matter what...Okay I know that there is

> still no actual solid proof that low folic acid is the 'cause' of TSC

> but " What if I had sucked it up and taken it? " For that I feel guilt.

>

> I just heard on the news that lab rats, while pregnant, given just

> the slightest bit of coffee caused a higher birth defect rate than

> those rats not given any caffiene. Coffee was the one 'vice' I had.

> I went half-calf or decalf MOST of the time, but there were days

> especially when you are just dragging that I ran to the nearest

> Starbucks for a fix! " What if I didn't? " Again, I know that not

> everything you hear in the news is that black and white and I'm sure

> there were several others factors, but that's not what my mind

> hears. I hear, " Damn it, why'd I drink that coffee? If I could go

> back in time...I wouldn't have. It's my fault. "

>

> I've heard it said numerous times that the older you get the risks

> are higher for birth-defects. I'm 37, I waited, I wanted to be

> married, establish a home, travel, finish school, be selfish and just

> enjoy 'couplehood'. My husband didn't want another child, I pushed

> him for her, he was worried about my age and truly did say " What if

> something's wrong? " No way, not to me...not to us...we have it all,

> we're doing it right, what could happen? " What if I didn't wait so

> long to start a family? " When I look at my husband, I feel guilty

> for the pain I caused him. I will never be able to erase the look in

> his eyes when they took her out of my arms and walked down the hall

> to surgery...I will never forget seeing my husband bawl for the first

> time. I will never forget how bleak the world seemed when I realized

> that my indestructable 'rock' of a husband was for the first time in

> his life, not in control. I did this, I pushed this, I created

> this...I feel guilty.

>

> You see the silly part of it is, my rational side says " Don't do this

> to yourself. That little girl needs a strong mother to support her

> not someone having a pity party for herself. " My rational side knows

> that I will never know 'what if' so why do I beat myself up about

> it? My rational side says to look and stay as positive as you can

> about the situation, I mean does my husband share an ounce of the

> guilt? No, he doesn't feel a personal 'guilt' I mean he's as worried

> for her as I am but not guilt. But I can't escape the internal

> finger-pointing that I do everyday. 's scar is a daily

> reminder of " what if " and a silent battle of guilt I have with myself

> all the time.

>

> Before the surgery I didn't feel this way. Its crazy that now that

> it is past us, this overwhelming sensation has occured. I go from

> being extremely optimistic one day to feeling like the world is ready

> to crash down on me the next. I don't how, as parents of children

> that have gone through this, deal with this constant anxiety. How do

> you face them without that feeling of shame for that stupid cup of

> coffee you had to have!? I am not trying to make this about me and

> it angers me that I do feel like I'm trying to take some of this for

> myself. Maybe that's why I'm holding so much guilt? The want for

> someone to feel sorry for me? I really don't think so, that's not my

> character at all. But if it isn't, why? It is a continual mindgame

> that I can't drop. I find my temper has become shorter, my mood

> changes so rapidly and God I've become so emotional.

>

> I feel ill-equipted to be this kind of a parent. How do you handle

> this? Dang, I think this turned into a blog...sorry.

>

[Guest guest]

Here's a thought that went through my mind, then I

thought " Gee, maybe this would be interesting! "

Abby, measure your own calves. See if they are

different in diameter. I'm curious to know how normal

a centimeter's difference is. Anyone else who has a

child with this, if you would like to measure and see

how symmetrical your legs are, I think it would be

interesting. Maybe it will answer a question about

how normal is normal!

--- subub_98 wrote:

>

> We had the surgery , she did great. She is now

> walking, and talking.

> But, I put her thru a microscope and found that one

> calf is slightly

> different size (diameter) than other. I pulled out

> the measuring tape,

> and measured and found a less than half cm

> difference. Enough to drive

> me crazy. I did cyber therapy too, and wrote to a

> whole lot of people

> and groups about my fears. I still dont know what

> her leg differences

> mean, it is so slight , can it just be normal?

__________________________________________________

[Guest guest]

,

I could be institutionalized...I already did. As soon as I found my

daughter's difference, I measured myself and my other daughter. They

were all perfectly symmetrical to the dot :=(. Even if they werent, I

have heard that once you have a preference (right handedness vs left

handedness), it is ok for a slight difference to appear because of

more usage/exercising of muscles. But in a baby less than one year

old, that would not be normal.

The difference is really so slight, that it is not a problem. Everyone

acknowledges the difference. The bigger issue is what is causing it,

and can it be progressive, and that is the cause for worry.

I just cant seem to stop worrying. I go to a doctor, or PT and feel

relieved for one day, and then the worry and anxiety starts all over

again within a couple of days. I am really trying hard to pull myself

together, and I am better than how I was a couple of months ago, but

it seems to be a personality thing. I am so glad that summer is over

because my daughter is fully clothed now and I dont have the

opportunity to keep looking at her bare calves all the time. I am

wondering if counseling will help - never done that, used to think I

was a strong person.

Abby.

>

> >

> > We had the surgery , she did great. She is now

> > walking, and talking.

> > But, I put her thru a microscope and found that one

> > calf is slightly

> > different size (diameter) than other. I pulled out

> > the measuring tape,

> > and measured and found a less than half cm

> > difference. Enough to drive

> > me crazy. I did cyber therapy too, and wrote to a

> > whole lot of people

> > and groups about my fears. I still dont know what

> > her leg differences

> > mean, it is so slight , can it just be normal?

>

>

> __________________________________________________

>

[Guest guest]

Oh sweetie, all parents feel that way about all the silly things we do. Please

don't beat yourself up. Back when I was pregnant, we didn't even know not to

drink caffeine. We didn't have car seats for the kids in those days, let alone

seat belts. We let the kids stand in the seat and put our arms out when we had

to hit the brakes. There is always something in life that you can feel guilty

over; the hard part is forgiving yourself and going on, but you have to do it.

Keep talking about it here if you need to and we'll keep you going. Hugs, Diane

V.

Continual Mindgame-'s Mom

Please feel free to ignore my posts. I think, when I'm having a hard

time I turn here. Its cyber-therapy for me.

.

[Guest guest]

,

Did you use to be a cheerleader?????

Hugs, and thanks for the pep rally!!!!

Tommi

--- Weaver wrote:

> Oh, you poor thing. Don't do this to yourself. By

> the time most women know they're pregnant, SB has

> already happened. TCS has already happened. You can

> what if yourself to tears. What if you had

> conceived

> her with a different sperm cell, or if the

> conception

> had happened 15 minutes (or even seconds) later? It

> is futile to try to figure out what went wrong. In

> most cases, nothing could be done. It's just a

> fluke,

> and coffee, smoking, alcohol, remember how many

> women

> used to do those things while pregnant with US, and

> so

> many of us didn't have the issues those substances

> can

> cause. In fact, the majority of women who smoke,

> drink alcohol on occassion, or drink caffeine have

> perfectly normal babies. That isn't a license to go

> do those things while pregnant (except coffee - that

> one is very up for debate!), because many women who

> do

> those things have babies with problems. But not the

> majority.

>

> There is most likely nothing you could have done to

> prevent something like this. Instead of beating

> yourself up over what you did or didn't do, look

> forward to what your daughter has going for her.

> TCS

> isn't her whole being. It's just a small part, and

> regardless of how many problems it causes her, she

> will have many more blessings. Count those. They're

> nicer to count.

>

> Oh, and forgive yourself, even if there is nothing

> to

> forgive. Guilt is wasted energy. It will get you

> nowhere.

>

> Hugs,

>

>

>

> --- jozann18 wrote:

>

> > Please feel free to ignore my posts. I think,

> when

> > I'm having a hard

> > time I turn here. Its cyber-therapy for me.

> >

> > I just had to follow up my last post with this.

> > First thank you

> > everyone for the positive support and feedback. I

> > realize I'm naive

> > and truly the only way for me to stay sane is to

> > assume that she is

> > going to be that lucky person that is untethered

> and

> > never has

> > another day of problem.

> >

> > Here's what I'm finding is so difficult to handle,

> > before having the

> > surgery I didn't feel like it was my fault. I had

> > read some posts

> > that stated how guilty some parents felt and I

> > didn't get it. I just

> > thought what an awful diagnosis, why her/why

> > her/her. I felt sorry

> > for us as a family and for her struggles but never

> > took that guilt

> > role.

> >

> > Now, post surgery, it seems I can't escape the

> guilt

> > I feel. I'm

> > constantly hearing about Folic Acid intake. Could

> > that be a factor?

> > I was so sick for the first 12 weeks I threw

> > everytime I took the

> > pill, heck I threw up everything no matter what it

> > was. I was

> > horrible at taking it, its a huge pill/it would

> > stick in my throat

> > and I'd gag. I did take it but not as much as I

> > should. Now...I

> > feel tremendous guilt. If I could only turn back

> > the clock, I would

> > have taken that damn pill no matter what...Okay I

> > know that there is

> > still no actual solid proof that low folic acid is

> > the 'cause' of TSC

> > but " What if I had sucked it up and taken it? "

> For

> > that I feel guilt.

> >

> > I just heard on the news that lab rats, while

> > pregnant, given just

> > the slightest bit of coffee caused a higher birth

> > defect rate than

> > those rats not given any caffiene. Coffee was the

> > one 'vice' I had.

> > I went half-calf or decalf MOST of the time, but

> > there were days

> > especially when you are just dragging that I ran

> to

> > the nearest

> > Starbucks for a fix! " What if I didn't? " Again,

> I

> > know that not

> > everything you hear in the news is that black and

> > white and I'm sure

> > there were several others factors, but that's not

> > what my mind

> > hears. I hear, " Damn it, why'd I drink that

> coffee?

> > If I could go

> > back in time...I wouldn't have. It's my fault. "

> >

> > I've heard it said numerous times that the older

> you

> > get the risks

> > are higher for birth-defects. I'm 37, I waited, I

> > wanted to be

> > married, establish a home, travel, finish school,

> be

> > selfish and just

> > enjoy 'couplehood'. My husband didn't want

> another

> > child, I pushed

> > him for her, he was worried about my age and truly

> > did say " What if

> > something's wrong? " No way, not to me...not to

> > us...we have it all,

> > we're doing it right, what could happen? " What if

> I

> > didn't wait so

> > long to start a family? " When I look at my

> husband,

> > I feel guilty

> > for the pain I caused him. I will never be able

> to

> > erase the look in

> > his eyes when they took her out of my arms and

> > walked down the hall

> > to surgery...I will never forget seeing my husband

> > bawl for the first

> > time. I will never forget how bleak the world

> > seemed when I realized

> > that my indestructable 'rock' of a husband was for

> > the first time in

> > his life, not in control. I did this, I pushed

> > this, I created

> > this...I feel guilty.

> >

> > You see the silly part of it is, my rational side

> > says " Don't do this

> > to yourself. That little girl needs a strong

> mother

> > to support her

> > not someone having a pity party for herself. " My

> > rational side knows

> > that I will never know 'what if' so why do I beat

> > myself up about

> > it? My rational side says to look and stay as

> > positive as you can

> > about the situation, I mean does my husband share

> an

> > ounce of the

> > guilt? No, he doesn't feel a personal 'guilt' I

> > mean he's as worried

> > for her as I am but not guilt. But I can't escape

> > the internal

> > finger-pointing that I do everyday. 's

> scar

> > is a daily

> > reminder of " what if " and a silent battle of guilt

> I

> > have with myself

> > all the time.

> >

> > Before the surgery I didn't feel this way. Its

> > crazy that now that

> > it is past us, this overwhelming sensation has

> > occured. I go from

> > being extremely optimistic one day to feeling like

> > the world is ready

> > to crash down on me the next. I don't how, as

> > parents of children

> > that have gone through this, deal with this

> constant

> > anxiety. How do

> > you face them without that feeling of shame for

> that

> > stupid cup of

> > coffee you had to have!? I am not trying to make

> > this about me and

> > it angers me that I do feel like I'm trying to

> take

>

=== message truncated ===

Tommi

's Mom

Chicago, IL. USA

__________________________________________________

[Guest guest]

Oh, Tommi, you made me laugh! No. I never was a

cheerleader. I'm not peppy or perky or any of those

things cheerleaders are. I'm actually pretty

fatalistic when it comes to things. They are what

they are. What I am is a firm believer in putting my

energy to where it does me the most good. I don't do

guilt. Complete and utter waste of time. I worry,

but only because I heard once that 98% of things we

worry about don't ever come to fruition, so I figure

if I worry about 100 things, only two will actually

happen and I have a good chance they'll be two silly

things. )

My mom has a serious guilt trip going on about me, and

it breaks my heart whenever she says she's sorry to

me. We all have burdens to bear. Mine happen to be

mostly physical, but I think I'm doing way better than

the person with paranoid schizophrenia who has a

rockin' hard body with no physical complaints. I'll

take what I have. It really isn't so bad when you

think about it.

Rah, rah, rah!

--- tommi wrote:

> ,

> Did you use to be a cheerleader?????

> Hugs, and thanks for the pep rally!!!!

> Tommi

>

__________________________________________________

[Guest guest]

Weaver said the following on 10/19/2006 6:37 PM:

> What I am is a firm believer in putting my energy to where it does me the most

good.

That's what cheerleaders do, put all their energy out there to inspire the team

(meaning the rest of us).

Somewhere I have a quote about optimism vs pessimism, when I find it I will post

it. Thank you from all of us.

Rick