Re: the emotional side of CF

[Guest guest]

,

Good question. You're gonna get the " LONG " version of my answer to

this.

Here's how we did it. My father was born with CF, so I didn't have

to explain it to that side of the family. Mostly my parents shared

it with everyone they were talking with anyway and that didn't bother

me/us. When I then saw those same people, some of them felt free to

ask about her progress. Some other people were probably curious, but

were unsure if they should bring it up. So I'd bring it up myself.

I figure it's part of our life, or at least it was a pretty big part

right after she was born and during the casting and 24/7 bracing.

Plus, at the time, there were so few people using Ponseti's method, I

felt obligated to share our experience with anyone who would listen.

I was REALLY on fire about talking about the beauty of the Ponseti

method and I'd packaged our story into about a 5 minute

speach/presentation. So, in that way, I did treat it like a big

deal; but that was mainly the treatment aspect, not the deformity

itself.

With Annika's older sister, Kirsten, we just explained to her that

Annika was born with crooked feet and later explained what clubfeet

meant. Kirsten was able to comprehend (at age 2) most of what we

told her, but it was in simple lay terms. (The doctor has to stretch

her feet. Then the doctor has to put a cast on her feet to keep them

straight....etc.)

I guess I don't feel like there's anything I've done so far, that I

wish I hadn't. Once Annika could begin comprehending " why " she was

wearing the FAB, I sat down and showed her photographs of her feet

when she was born, all of the casts she had, etc. I explained that

her feet were crooked when she was born and that the doctor said that

she needed to wear the FAB to keep her feet straight. That helped

her stop fighting us at night-time (she had only been fighting about

it for a few weeks prior to this) I've never treated her like she

couldn't do anything because of CF. I seldom intervene when she has

on the FAB and is trying to accomplish something, but is having

difficulty. I let her keep at it....and usually she doesn't want our

help if we offer it.

We have yet to deal with the " skinny calf " issue, or possible

teasing. But mostly I think we just approach it from a no-nonsense

POV. What I mean by that is: It is what it is. There's nothing we

can do to change it, so lets not cry over it. Things could have been

much worse, and in the VERY GRAND scheme of problems in this world,

being born with clubfoot is a minor nusisance. Now, that may not be

how other people want to go about it in their head, but that's what

works for me. Keeps me from feeling sorry for her because I feel

that's only unfair to her. She is otherwise a very healthy child,

but most of all, she is a child who is loved and has lots of

potential in SO MANY areas, even if her legs/feet don't (which we

don't really know, do we?)

Mostly how you deal with it will come from how you choose to let

yourselves feel about everything. Even though there were a 'few'

times that I got depressed over everything and feeling sorry for

Annika, I didn't let it show to others much. My eldest did see me

cry recently over Annika's recent relapse (shhhhh, don't tell anyone

I cried). I was just honest and told her that I was sad because

Annika's feet were having problems again and that it made me sad.

Why lie?

Strangers can be another matter entirely, especially when you're

going through the casting phase. Many parents have gotten an " evil

eye " or " whadja do to your baby.. " comment. I suggest that you think

through how you want to handle questions/comments/stares ahead of

time wether it be about the casts or eventually the FAB. Then,

you'll be prepared for whatever situation emerges. Lots of people

are just curious too, but if you're not comfortable talking about it,

work out a short/concise response that will cut the questions short.

Just ask yourself what feels right? What's most comfortable for

you? Does it bother you to discuss it with other people? Etc....

Those questions will be your cue for how to handle sharing info. with

other people.

I hope that helped some.

Lori and Annika

p.s. In the first week after Annika was born, my husband used the

word " deformity " to describe her clubbed feet. Well, I just about

decked him! No one was gonna say MY BABY was deformed!!!! Well,

chalk it up to post partum delirium. I made friends with the

word " deformity " and now I'm relatively sane about such matters.

> Our daughter was born with unilateral CF 7 weeks ago. Now that

we're

> squared away on the medical end of her treatment (we're going to

see

> Dr. Ponseti this week) We're curious about how people explain CF to

> friends, family and the curious stranger. How much information

> should we share? Whats the best way to discuss CF with older

sibs?

> We want to be open an honest, but we also want to avoid

stigmatizing

> our daughter about her " syndrome. " Is it best to deal with this

head

> on with others, or play it down, and make it a non-issue?

> Sorry i'm rambling--hope this isnt a silly question

> and Kayla )12-27-01)

[Guest guest]

,

Good question. You're gonna get the " LONG " version of my answer to

this.

Here's how we did it. My father was born with CF, so I didn't have

to explain it to that side of the family. Mostly my parents shared

it with everyone they were talking with anyway and that didn't bother

me/us. When I then saw those same people, some of them felt free to

ask about her progress. Some other people were probably curious, but

were unsure if they should bring it up. So I'd bring it up myself.

I figure it's part of our life, or at least it was a pretty big part

right after she was born and during the casting and 24/7 bracing.

Plus, at the time, there were so few people using Ponseti's method, I

felt obligated to share our experience with anyone who would listen.

I was REALLY on fire about talking about the beauty of the Ponseti

method and I'd packaged our story into about a 5 minute

speach/presentation. So, in that way, I did treat it like a big

deal; but that was mainly the treatment aspect, not the deformity

itself.

With Annika's older sister, Kirsten, we just explained to her that

Annika was born with crooked feet and later explained what clubfeet

meant. Kirsten was able to comprehend (at age 2) most of what we

told her, but it was in simple lay terms. (The doctor has to stretch

her feet. Then the doctor has to put a cast on her feet to keep them

straight....etc.)

I guess I don't feel like there's anything I've done so far, that I

wish I hadn't. Once Annika could begin comprehending " why " she was

wearing the FAB, I sat down and showed her photographs of her feet

when she was born, all of the casts she had, etc. I explained that

her feet were crooked when she was born and that the doctor said that

she needed to wear the FAB to keep her feet straight. That helped

her stop fighting us at night-time (she had only been fighting about

it for a few weeks prior to this) I've never treated her like she

couldn't do anything because of CF. I seldom intervene when she has

on the FAB and is trying to accomplish something, but is having

difficulty. I let her keep at it....and usually she doesn't want our

help if we offer it.

We have yet to deal with the " skinny calf " issue, or possible

teasing. But mostly I think we just approach it from a no-nonsense

POV. What I mean by that is: It is what it is. There's nothing we

can do to change it, so lets not cry over it. Things could have been

much worse, and in the VERY GRAND scheme of problems in this world,

being born with clubfoot is a minor nusisance. Now, that may not be

how other people want to go about it in their head, but that's what

works for me. Keeps me from feeling sorry for her because I feel

that's only unfair to her. She is otherwise a very healthy child,

but most of all, she is a child who is loved and has lots of

potential in SO MANY areas, even if her legs/feet don't (which we

don't really know, do we?)

Mostly how you deal with it will come from how you choose to let

yourselves feel about everything. Even though there were a 'few'

times that I got depressed over everything and feeling sorry for

Annika, I didn't let it show to others much. My eldest did see me

cry recently over Annika's recent relapse (shhhhh, don't tell anyone

I cried). I was just honest and told her that I was sad because

Annika's feet were having problems again and that it made me sad.

Why lie?

Strangers can be another matter entirely, especially when you're

going through the casting phase. Many parents have gotten an " evil

eye " or " whadja do to your baby.. " comment. I suggest that you think

through how you want to handle questions/comments/stares ahead of

time wether it be about the casts or eventually the FAB. Then,

you'll be prepared for whatever situation emerges. Lots of people

are just curious too, but if you're not comfortable talking about it,

work out a short/concise response that will cut the questions short.

Just ask yourself what feels right? What's most comfortable for

you? Does it bother you to discuss it with other people? Etc....

Those questions will be your cue for how to handle sharing info. with

other people.

I hope that helped some.

Lori and Annika

p.s. In the first week after Annika was born, my husband used the

word " deformity " to describe her clubbed feet. Well, I just about

decked him! No one was gonna say MY BABY was deformed!!!! Well,

chalk it up to post partum delirium. I made friends with the

word " deformity " and now I'm relatively sane about such matters.

> Our daughter was born with unilateral CF 7 weeks ago. Now that

we're

> squared away on the medical end of her treatment (we're going to

see

> Dr. Ponseti this week) We're curious about how people explain CF to

> friends, family and the curious stranger. How much information

> should we share? Whats the best way to discuss CF with older

sibs?

> We want to be open an honest, but we also want to avoid

stigmatizing

> our daughter about her " syndrome. " Is it best to deal with this

head

> on with others, or play it down, and make it a non-issue?

> Sorry i'm rambling--hope this isnt a silly question

> and Kayla )12-27-01)

[Guest guest]

Wow...you sound much healthier than me..LOL!! I haven't quite come

to terms with the word " deformity " or my doctor's favorite, " birth

defect " . I guess when you really look at the situation, that's

exactly what it is...a birth defect. One that affects one in 1000

children. I'm doing much better three weeks into the process than I

was at the first casting (talk about a breakdown...it was not a

pretty sight!)

I guess I am coming to terms with the whole process and everytime I

get down about it, I look at all these children with heart problems,

cancer, and other major problems and think to myself, wow..we're so

lucky...it could have been much worse.

But yes, I do get emotional when it comes to my son. He is my first

and only 3 weeks old. I used to feel cheated, but now I feel blessed.

Ally & (born 1-29-02 unilateral left clubfoot)

> > Our daughter was born with unilateral CF 7 weeks ago. Now that

> we're

> > squared away on the medical end of her treatment (we're going to

> see

> > Dr. Ponseti this week) We're curious about how people explain CF

to

> > friends, family and the curious stranger. How much information

> > should we share? Whats the best way to discuss CF with older

> sibs?

> > We want to be open an honest, but we also want to avoid

> stigmatizing

> > our daughter about her " syndrome. " Is it best to deal with this

> head

> > on with others, or play it down, and make it a non-issue?

> > Sorry i'm rambling--hope this isnt a silly question

> > and Kayla )12-27-01)

[Guest guest]

Wow...you sound much healthier than me..LOL!! I haven't quite come

to terms with the word " deformity " or my doctor's favorite, " birth

defect " . I guess when you really look at the situation, that's

exactly what it is...a birth defect. One that affects one in 1000

children. I'm doing much better three weeks into the process than I

was at the first casting (talk about a breakdown...it was not a

pretty sight!)

I guess I am coming to terms with the whole process and everytime I

get down about it, I look at all these children with heart problems,

cancer, and other major problems and think to myself, wow..we're so

lucky...it could have been much worse.

But yes, I do get emotional when it comes to my son. He is my first

and only 3 weeks old. I used to feel cheated, but now I feel blessed.

Ally & (born 1-29-02 unilateral left clubfoot)

> > Our daughter was born with unilateral CF 7 weeks ago. Now that

> we're

> > squared away on the medical end of her treatment (we're going to

> see

> > Dr. Ponseti this week) We're curious about how people explain CF

to

> > friends, family and the curious stranger. How much information

> > should we share? Whats the best way to discuss CF with older

> sibs?

> > We want to be open an honest, but we also want to avoid

> stigmatizing

> > our daughter about her " syndrome. " Is it best to deal with this

> head

> > on with others, or play it down, and make it a non-issue?

> > Sorry i'm rambling--hope this isnt a silly question

> > and Kayla )12-27-01)

[Guest guest]

I was a basket case when I found out. We found out at 22 weeks

pregnant. The doctor wawsnt sure, so she wanted to see us back in 6

weeks. At 28 weeks, it was confirmed. It was so hard for me. I

had my kids with me, and my husband had to work, so I was stuck

driving the car with them, crying, and trying to get home alive. I

pulled over, told the kids to excuse me and bawled for a good 5

minutes. That held me over till I got to my mothers. Then I cried

some more. My husband was devastated, and we went through the

finger pointing issue (its YOUR fault). After a few days, I made an

effort to prepare myself.

At delivery, no one remembered to tell them we knew what was coming,

so the pediatrician was kinda unsure what to say to me, considering

I kept saying " OMG...How bad is it? " I think she thought I was

nuts. I was ok, and so was he.

It seems now that so many people either

a. know someone who had to wear the FAB at night

b. IS someone who wore it

c. thinks that it is some other problem.

I think if I had heard the word deformity, I too would have gone off

the deep end. I guess I did go off the deep end, seeing what was

going on here. I have 3 kids, all them have appointments at some

place or another. Weekly casting, checkups, grocery shopping, then

it was Christmas. I lost it, and turned to my doctor in tears. It

was so busy here, I tried to free up time when I could, and one

thing I cancelled was my post-partum check up. A BIG no-no, as I

soon discovered. By this time, my PPD had gotten so bad, I needed to

go on medicine. Thankfully, I feel a lot better now. I hope that

didnt scare anyone. Just keep your Post-Partum Appointment no

matter how busy you get.

I havent been out too much since the FAB, but since

the " modification " on Mikey's shoes, I get rave reviews on his shoes.

(see my next post for more on this one.)

Jenn

P.S. As for it becoming emotionally overwhelming, we are here to

listen and I know my messanger is usually on, and I am always

willing to listen, even if it is incoherent rambling. Everyone

needs a sounding board, and I am happy to be one.

[Guest guest]

I was a basket case when I found out. We found out at 22 weeks

pregnant. The doctor wawsnt sure, so she wanted to see us back in 6

weeks. At 28 weeks, it was confirmed. It was so hard for me. I

had my kids with me, and my husband had to work, so I was stuck

driving the car with them, crying, and trying to get home alive. I

pulled over, told the kids to excuse me and bawled for a good 5

minutes. That held me over till I got to my mothers. Then I cried

some more. My husband was devastated, and we went through the

finger pointing issue (its YOUR fault). After a few days, I made an

effort to prepare myself.

At delivery, no one remembered to tell them we knew what was coming,

so the pediatrician was kinda unsure what to say to me, considering

I kept saying " OMG...How bad is it? " I think she thought I was

nuts. I was ok, and so was he.

It seems now that so many people either

a. know someone who had to wear the FAB at night

b. IS someone who wore it

c. thinks that it is some other problem.

I think if I had heard the word deformity, I too would have gone off

the deep end. I guess I did go off the deep end, seeing what was

going on here. I have 3 kids, all them have appointments at some

place or another. Weekly casting, checkups, grocery shopping, then

it was Christmas. I lost it, and turned to my doctor in tears. It

was so busy here, I tried to free up time when I could, and one

thing I cancelled was my post-partum check up. A BIG no-no, as I

soon discovered. By this time, my PPD had gotten so bad, I needed to

go on medicine. Thankfully, I feel a lot better now. I hope that

didnt scare anyone. Just keep your Post-Partum Appointment no

matter how busy you get.

I havent been out too much since the FAB, but since

the " modification " on Mikey's shoes, I get rave reviews on his shoes.

(see my next post for more on this one.)

Jenn

P.S. As for it becoming emotionally overwhelming, we are here to

listen and I know my messanger is usually on, and I am always

willing to listen, even if it is incoherent rambling. Everyone

needs a sounding board, and I am happy to be one.

[Guest guest]

Hi and Kayla,

Well, reading Lori's answers to you is basically the same way we felt about

's clubfeet when she was born. I really did'nt have a problem with

people asking questions, in fact it made me feel better when they asked

instead of the many that just stared. I felt they were interested and even

though she had these huge casts on (she was'nt casted in the Ponseti method

until she was 5 months through to her 7th month) they still saw this

adorable, smiling chubby baby girl and that always made me (and her!) smile.

We had some uncomfortable outings, but we learned to deal with the looks and

after awhile, if people were still looking, I don't think we even noticed

anymore.

As for her big sister, (just turned three when was born) she

was our little godsend for her sister. She put everything into perspective

from the day she was born. " That's my baby sister , she was born with

silly feet and the doctor is fixing them for her. " She used to play dolly's

and her dolls would most of the time have socks on their legs that

would call casts. I actually think for awhile there she thought all babies

wore casts when they were born! We told that was born with

special feet that needed some help to be straightened like hers so that

would be able to do all the things that she could do when she was

bigger. That was good enough for her then and still now. Of course now at 5

years old she's pretty much a " pro " with her sisters feet and can answer

just about any question anyone throws her way. She has DEFINITELY made the

situation that was born in soooooo much easier for , there's a

bond there that can't ever be broken.

Anyway, just like Lori said, tell what you're comfortable with. I learned to

be much more forgiving of some of the stares, comments because I realized

that those people were just ignorant about my daughter's situation and it

really did'nt matter what they thought anyway.

As for the future.........................I'm just thrilled that is

otherwise healthy and happy and beam a huge smile every time I see her run

and play!

Holly and

the emotional side of CF

>Our daughter was born with unilateral CF 7 weeks ago. Now that we're

>squared away on the medical end of her treatment (we're going to see

>Dr. Ponseti this week) We're curious about how people explain CF to

>friends, family and the curious stranger. How much information

>should we share? Whats the best way to discuss CF with older sibs?

>We want to be open an honest, but we also want to avoid stigmatizing

>our daughter about her " syndrome. " Is it best to deal with this head

>on with others, or play it down, and make it a non-issue?

>Sorry i'm rambling--hope this isnt a silly question

> and Kayla )12-27-01)

>

>

>

>

[Guest guest]

Hi and Kayla,

Well, reading Lori's answers to you is basically the same way we felt about

's clubfeet when she was born. I really did'nt have a problem with

people asking questions, in fact it made me feel better when they asked

instead of the many that just stared. I felt they were interested and even

though she had these huge casts on (she was'nt casted in the Ponseti method

until she was 5 months through to her 7th month) they still saw this

adorable, smiling chubby baby girl and that always made me (and her!) smile.

We had some uncomfortable outings, but we learned to deal with the looks and

after awhile, if people were still looking, I don't think we even noticed

anymore.

As for her big sister, (just turned three when was born) she

was our little godsend for her sister. She put everything into perspective

from the day she was born. " That's my baby sister , she was born with

silly feet and the doctor is fixing them for her. " She used to play dolly's

and her dolls would most of the time have socks on their legs that

would call casts. I actually think for awhile there she thought all babies

wore casts when they were born! We told that was born with

special feet that needed some help to be straightened like hers so that

would be able to do all the things that she could do when she was

bigger. That was good enough for her then and still now. Of course now at 5

years old she's pretty much a " pro " with her sisters feet and can answer

just about any question anyone throws her way. She has DEFINITELY made the

situation that was born in soooooo much easier for , there's a

bond there that can't ever be broken.

Anyway, just like Lori said, tell what you're comfortable with. I learned to

be much more forgiving of some of the stares, comments because I realized

that those people were just ignorant about my daughter's situation and it

really did'nt matter what they thought anyway.

As for the future.........................I'm just thrilled that is

otherwise healthy and happy and beam a huge smile every time I see her run

and play!

Holly and

the emotional side of CF

>Our daughter was born with unilateral CF 7 weeks ago. Now that we're

>squared away on the medical end of her treatment (we're going to see

>Dr. Ponseti this week) We're curious about how people explain CF to

>friends, family and the curious stranger. How much information

>should we share? Whats the best way to discuss CF with older sibs?

>We want to be open an honest, but we also want to avoid stigmatizing

>our daughter about her " syndrome. " Is it best to deal with this head

>on with others, or play it down, and make it a non-issue?

>Sorry i'm rambling--hope this isnt a silly question

> and Kayla )12-27-01)

>

>

>

>

[Guest guest]

This is not a silly question!! I hated explaining it

to people at first (but you will get used to it), and

after a while, I stopped explaining it to strangers.

My son used to wear a single shoe 24 hrs a day and

when we were out EVERYONE would stop me to inform me

that he was missing a shoe. rather than explain to

strangers that he only has one, and why, I just

started saying " yes, I have the other one, thank you. "

Close family on the other hand know the whole story,

and I get several phone calls after each doctor's

appointment...I am just so happy we have a family that

has so much interest in he development. good luck!!

--- morahsuri2001 wrote:

> Our daughter was born with unilateral CF 7 weeks

> ago. Now that we're

> squared away on the medical end of her treatment

> (we're going to see

> Dr. Ponseti this week) We're curious about how

> people explain CF to

> friends, family and the curious stranger. How much

> information

> should we share? Whats the best way to discuss CF

> with older sibs?

> We want to be open an honest, but we also want to

> avoid stigmatizing

> our daughter about her " syndrome. " Is it best to

> deal with this head

> on with others, or play it down, and make it a

> non-issue?

> Sorry i'm rambling--hope this isnt a silly question

> and Kayla )12-27-01)

>

>

__________________________________________________