Re: Re: My Guardian column on limb-lengthening

December 4, 2008

Hi Dan! We are all great. Our daughter Maeve is 14 months and keeping

us on our toes. Our primary challenge these days is keeping things out

of her reach, but accessible for us.

No, there was no photo of Dahlia. I made the comment in the chat, and

the reporter said that she was photographed, but none of the photos made it

into print due to lack of space. Still don't see why some of them

couldn't have been added to the online gallery though.

Cara

________________________________

From: Dan Kennedy <dkennedy56@...>

Cara Egan Reynolds <egan921@...>

Cc: dwarfism

Sent: Thursday, December 4, 2008 10:12:02 AM

Subject: Re: Re: My Guardian column on limb-lengthening

Hi, Cara --

Great to hear from you, and I hope all is well with you and your family.

You make an excellent point about Dahlia. Did anyone see the print edition? Is

is possible that there was a photo of Dahlia there?

Like you, I have my own suspicions about the " totally up to Caitlin " angle. Yes,

I'm sure Caitlin got the final say, but this is after absorbing a certain

attitude in the home, no exposure to LPA, etc. The fact that she's decided to

stop after one round of surgery speaks to a certain ambivalence as well. As Dr.

Paley says, that's really unheard-of.

Dan

On Thu, Dec 4, 2008 at 10:00 AM, Cara Egan Reynolds <egan921@...> wrote:

Great essay Dan. Thanks so much for sharing.

I'm posting a link to a Washington Post online chat with Caitlin, her mother,

and the reporter.

http://www.washingtonpost.com/wp-dyn/content/discussion/2008/11/24/DI20081124018\

18.html

At one point in the chat the mother makes a comment that she was terrified of

Caitlin falling from a stool--so I assume then that stools weren't used in the

house to help her gain some freedom and independence. I think if my mother had

coddled me to that point, I probably would have opted for the surgery too.

I was extremely disappointed that the article didn't show any photos of Dahlia.

(You can see my comment about that in the chat transcript.)

Cara

________________________________

From: " dwarfism " <dwarfism >

dwarfism

Sent: Wednesday, December 3, 2008 1:32:53 PM

Subject: Digest Number 4198

Dwarfism List

Messages In This Digest (11 Messages)

1a.

Re: Reminder Ch13 D4 From: Grady

2a.

Fan of Matt's get tattoo From: Grady

2b.

Fan of Matt's get tattoo From: Grady

3a.

My Guardian column on limb-lengthening From: Dan Kennedy

3b.

Re: My Guardian column on limb-lengthening From: irish_p_butter@...

3c.

Re: My Guardian column on limb-lengthening From: Jennings Family

3d.

Re: My Guardian column on limb-lengthening From: Bill Bradford

3e.

Re: My Guardian column on limb-lengthening From: Grady

4.

Little People book website From: Dan Kennedy

5.

Test from Cincinnati, Ohio From: smmas

6.

Here is an online broadcast of Caitlin's ELL surgery From: Grady View All

Topics | Create New Topic

Messages

1a.

Re: Reminder Ch13 D4

Posted by: " Grady " gradysir@... gradysir

Tue Dec 2, 2008 11:41 am (PST)

Don't forgot to hang up the Dwarf Mistletoe, it's the most potent out

of them all, no joke. Everyone will be kissing everyone! haha

Google, " dwarf mistletoe " , just as I have it here in quotes, if you

don't believe me!

Have fun:), wish I could be there, but then if I was you wouldn't need

the mistletoe.

grady, the 'hi and kiss' botanist {}

> Hey Folk's This Saturday!

>

> We welcome you and your family to a

>

> Holiday/Christmas Party!

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Messages in this topic (2)

2a.

Fan of Matt's get tattoo

Posted by: " Grady " gradysir@... gradysir

Tue Dec 2, 2008 12:10 pm (PST)

I was thinking of all the lp men on here that I'd want a tattoo on my

body, anywhere, and sorry my fellow male shorties I drew a blank!!!!!

Ewwwwwwww!!! !!!! NO THANKS!!!!!! !!! YOU COULDN " T PAY ME ENOUGH TO GET

ONE OF ANY OF YOU!!!!!!!!! !!!!!!!!! ! OK, maybe Bill or Fred. haha

JUST KIDDING, not even them!!!!!!!! !!!! And sorry, not to burst

anyone's hope of seeing their likeness on me, that's just me.

I like being my own canvas, not yours, thank you!!! haha

To each their own tho:).

And yessssss, I know I am a big time fan to many on here as well...

but brothers and sisters, both small and tall, save yer money

and don't waste it on the likeness of me on you!!!!

Remember me more in your dreams... OK? haha

http://www.oleantim esherald. com/articles/ 2008/11/22/ news/doc49277bfe 6b88

4704185569.txt

enjoy, grady:P

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Messages in this topic (2)

2b.

Fan of Matt's get tattoo

Posted by: " Grady " gradysir@... gradysir

Tue Dec 2, 2008 12:11 pm (PST)

I was thinking of all the lp men on here that I'd want a tattoo on my

body, anywhere, and sorry my fellow male shorties I drew a blank!!!!!

Ewwwwwwww!!! !!!! NO THANKS!!!!!! !!! YOU COULDN " T PAY ME ENOUGH TO GET

ONE OF ANY OF YOU!!!!!!!!! !!!!!!!!! ! OK, maybe Bill or Fred. haha

JUST KIDDING, not even them!!!!!!!! !!!! And sorry, not to burst

anyone's hope of seeing their likeness on me, that's just me.

I like being my own canvas, not yours, thank you!!! haha

To each their own tho:).

And yessssss, I know I am a big time fan to many on here as well...

but brothers and sisters, both small and tall, save yer money

and don't waste it on the likeness of me on you!!!!

Remember me more in your dreams... OK? haha

http://www.oleantim esherald. com/articles/ 2008/11/22/ news/doc49277bfe 6b88

4704185569.txt

enjoy, grady:P

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Messages in this topic (2)

3a.

My Guardian column on limb-lengthening

Posted by: " Dan Kennedy " dkennedy56@... dk56

Tue Dec 2, 2008 2:56 pm (PST)

Hello, everyone --

You probably already know that the Washington Post Magazine this past Sunday

published a long, very well-done article on a teenage girl with dwarfism who

undergoes limb-lengthening. I write a weekly column for the Guardian, and I

decided to offer some further thoughts this week. Please have a look:

http://tinyurl. com/5q79yn

(Fred: I write for Guardian America, which is online-only, so no need to run

out and find a copy!)

Thanks,

Dan Kennedy

Author, " Little People "

http://www.littlepe oplethebook. com*

*

December 4, 2008

Hello all,

I read the chat as well. I agree with your point Cara, falling off a stool?

Any child of any height could fall of a stool. I have met parents who have come

to me for info about their dwarf child and have made sheltering statements to

the point that one parent did not want their child to attend school outside of

the home because it would be afraid for them.

I really do wonder if Caitlyn was in an LPA environment growing up she would

have made the same decision? I feel that parent's fears, worries, and ignorance

can inadvertantly be placed upon the child where they start feeling like there

is something " wrong " with them and they need to be changed? Did Caitlyn ever

have the fear of falling off the stool?? It makes me laugh because I see how

the little lp kids are at conferences, my gosh, if those kids want something,

they will find a way! I think LP's are more creative because we've had to think

on our feet to be able to accomplish things. I think that's a great trait.

I will just never understand making a painful decision with many risks just for

a few inches of height to reach a shelf??? There are many average height people

in the five foot range that cannot reach shelves or their clothes don't fit

perfectly. I guess I could take the opposite view and think of those

individuals who are exceptionally tall, should part of their bones be cut out to

make them shorter?

I will never support limb lengthening in terms of gaining height, but I could

understand the decisions more if children like Caitlyn were exposed to LPA or

others with their height and after being in the community then made the

decision.

-

December 4, 2008

Hello, --

Great post. I am also 52, and, to be fair, most of the dinosaurs had died

off when we were kids. We had a huge tar pit in our back yard into which

several stegasauruses were slowly turning into oil.

Interestingly enough, Dr. Goldberg, who is not at all enthusiastic

about ELL, has nevertheless advocated surgery on the arms -- correcting the

elbow problem that makes it impossible for people with achondroplasia to

straighten their arms, and adding maybe an inch or two of length. This is

not for cosmetic purposes at all -- it's for functioning, personal hygiene,

etc.

You could make the case that Caitlin chose the wrong part of her body to be

altered.

Dan

On Thu, Dec 4, 2008 at 4:02 PM, M <petite_isla@...> wrote:

> Hi folks,

>

> I was ambivalent about participating in this thread, but since it's

> going so well I'll throw in my 5 cents.

>

> I walked in Caitlin's shoes in the sense of having a life at that age

> which had no dwarf influence, other than my own experiences. (Mind you

> I am 52 and those were different times when we still had dinasours

> walking around.) I strongly suspect (or know in moments of

> introspection) that if I had been given the option offered to her I

> would have made a similar choice and for similar reasons. Although I

> lived in a household and was part of a family that was way too

> conscious of the physical (imagine living w/3 beauticians), I'm not

> sure it was about the physical 'beautification' change associated with

> the increase in height. Perhaps that's because the physical aspects of

> my dwarfism are more evident than Caitlin's. Or at least to me they

> seem so, comparing what I looked like at that age, to her pictures. I

> also for the most part would have also appreciated the freedom that a

> few more inches gave me and even more as I age and become less stool

> secure. We did have a stool or 2 in the house and at that point that

> was all I needed. And many a times heard the " be careful there "

> warning from adults. We won't talk about climbing on other less secure

> items like high chairs with wheels! A few accomodations were made for

> me in school, but honestly not until my freshman year in college and

> for a photography class involving darkroom work. Maybe more could have

> been done, but I was resistant and chose to go with minimum

> intervention (and dangerous high chairs). Now I can see that I wanted

> to blend in as much as possible. As if we can hide the dwarfism or we

> ever blend in climbing on precarious furniture.

>

> It is unfortunate that the decision for such great change has to be

> made at such a young age. Bottom line, the 'now or never' window of

> opportunity is rather small and exacerbates the situation. Even now at

> 52 I hate when I find myself pushed up against a hard wall and have to

> weigh out the consequences of a life altering decision. One lives life

> at that age in a situation where it's all about the mirror and

> perception, whereas at the age of 52 I've learned to look at it from

> the inside out. And yet, I find myself having moments now, as I age

> and the disability affects my mobility even more, where I'd sacrifice

> enormously to change that which I know cannot be changed. I'm calling

> this my 'mid-life crisis', no cute expensive car involved!

>

> I will say that I am astounded that her parents, in this day and age

> of Internet access, did not make more of an effort to expose

> themselves to the 'community' and at least let Caitlin see other

> possibilities or solutions. For that (in my humble opinion) they

> should have made time and effort. As we all know it is difficult being

> different and expecially at an age when we want to blend in. And it

> helps enormously to see that there are others like us who may also

> struggle to adapt, but do none the less.

>

> And I was more appaled at the doctor's insistance of follow-up surgery

> for her arms. Or at least to me it seemed that he was more insistant

> that the mother. I am glad that Caitlin chose to discontinue further

> enhancements and also that she is doing so well with the outcome of

> the surgery she did have. Hopefully this is a story with a good ending

> and it does give her what she needed; whatever that may turn out to

> be. Everyone has their own threshold for inner strength and hopefully

> we find our own way of coping without being judged too much by the

> 'community' we will always belong to, if not join.

>

> Interesting discussion folks,

>

> =====post below edited to include only relevant information, for space

> purposes ================

>

> At one point in the chat the mother makes a comment that she was

> terrified of Caitlin falling from a stool--so I assume then that

> stools weren't used in the house to help her gain some freedom and

> independence. I think if my mother had coddled me to that point, I

> probably would have opted for the surgery too.

> >

> > I was extremely disappointed that the article didn't show any photos

> of Dahlia. (You can see my comment about that in the chat transcript.)

> >

> > Cara

>

December 4, 2008

Hi Gillian and all,

Honestly, there are a lot of things LPA does not provide just because it lacks

resources or funding. Speaking for myself, I really have no desire to go to a

conference and celebrate with people with the same uniqueness like myself then

have a booth or pamphlet about limb lengthening, in my mind that seems very

warped, and against the mission of LPA (of what I view it to be).

If people want to have the proceedure done, I am sure they are able to find the

appropriate people, like Caitlin's family to do it. Also, I am sure the MAB

would provide recommendations if approached.

I can say that as a little girl my family brought it up to me. I think now they

do not do ELL on pseudos because of our issues, but at the time I was asked. My

family asked me, thought about it for a minute, and said no. Maybe I'm being a

mean future parent, but my child will not have the choice. Out of high school

they can do whatever they like, and if it would be too late, then so be

it. Surgery that is needed is hard enough with it's own risks,

stresses, sacrifices of patience, time, and money, I would never let my child do

it for purely cosmetic reasons of gaining a few inches. The less surgeries my

future child will have, the happier I will be. If that makes me a bad future

parent, then that's alright by me, can't be perfect 24/7 lol.

Here's my thought: If I had it done and became 4'0 instead of 3'3, so 7

inches, how much different would my life be? I still would have gone to college,

I still would have majored in the same thing, I still would be working at the

same place, living in the same apartment, I'd still have the same friends with

the same ex's lol. I'd still need pedal extenders and stools, I'd still have

arthritis, and I'd still need my joints replaced in about 15 years. What would

really change? Reaching a shelf at a store?

I guess I will just never really understand.

-

December 4, 2008

Gillian!

Thanks ever so much for this posting. I am VERY glad that you participated in

this discussion. I am saying this without commenting on my opinion on the

procedure discussed.

Bless you,

Re: My Guardian column on limb-lengthening

I'm late in joining this discussion, but feel there are a few things

I needed to add. Most people participating are long familiar with my

story and Dan mentions it briefly. I am the first LP in North

America to complete all three stages of ELL for dwarfism and gained

almost a foot. I started this procedure in 1988 so this past June

marked twenty years and finished in 1992 so my completed results are

over 15 years old. To date I have no problems. I lead a very active

and busy life. That's a very quick synopsis.

Two things I wanted to mention though. First I know of no one who

has died from this procedure. I know Dr. Ain likes to say it can

happen, and it can with any surgery, but to my knowledge, that has

never happened with Dr. Paley.

Second, most (all?) of the LPs who undergo ELL are not trying

to " fix " ourselves. Dan's right, we're not broken. Accordingly

there is nothing to fix. We're not raised to think there is

something wrong with us. I certainly was not. I chose to have this

procedure because I understood it would make my life functionally

easier.

ELL is a personal choice for each LP and thier family to make amongst

themselves. That's the bottom line. I must say I have found the

discussion about changing society interesting. I certainly don't

disagree with the idea. I think the most we can change society to

become more accepting and accommodating the better. And the same can

be said for LPA and ELL. Why are members not provided complete

information on ELL? Why has the LPA MAB not separated the wheat from

the chaff among surgeons so those LPs who do want this know where to

go. Over half the links on the website concerning ELL do not even

work and have not in a long time. LPs should be provided with as

much information as possible so they can make the most informed

decisions possible.

Just my two cents. As always, I'm happy to answer any questions.

Gillian.

>

> Hello, everyone --

>

> You probably already know that the Washington Post Magazine this

past Sunday

> published a long, very well-done article on a teenage girl with

dwarfism who

> undergoes limb-lengthening. I write a weekly column for the

Guardian, and I

> decided to offer some further thoughts this week. Please have a

look:

>

> http://tinyurl.com/5q79yn

>

> (Fred: I write for Guardian America, which is online-only, so no

need to run

> out and find a copy!)

>

> Thanks,

>

> Dan Kennedy

> Author, " Little People "

> http://www.littlepeoplethebook.com*

> *

>

December 5, 2008

Good points .

I also think of the pychological aspect ...Caitlin has spent the first 14

or so years of her life having short stature and dealing with LP issues which

most likely effected her self image. Also dealing with societies viewpoint

of her with all of the stares, comments etc....that is baggage that will be

with you the rest of your life whether you are short or taller. I hope I am

making sense.

I think if " Mom " had a totally different outlook, more positive

emotions, etc....(allowing her to use stools, ) It is unfortunate the surgery

can not

be done " as safely " at an older age when the she was an adult, making adult

decisions.

I don't know if anyone has mentioned how beautiful and attractive Caitlin

is.

Carole

**************Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

December 5, 2008

I thought of having the arm straightening surgery when I was a teenager

because my elbows are significantly bent so it would have added inches

to my reach. But after having the leg straightening surgery at ages 15

and 17 (it had to be redone on 1 leg), I decided it simply was not worth

it to have it done on my arms. I've never regretted that decision.

One thing I found, and I think many other people on this list have

found, is that being an adult with dwarfism is so much easier than being

a child or teenager with dwarfism. I think this has a lot to do with

emotional maturity and having a lot more control over the physical and

social environment. And yet, this would have been incomprehensible to

me as a teenager.

Judy

Dan Kennedy wrote:

> Hello, --

>

> Great post. I am also 52, and, to be fair, most of the dinosaurs had died

> off when we were kids. We had a huge tar pit in our back yard into which

> several stegasauruses were slowly turning into oil.

>

> Interestingly enough, Dr. Goldberg, who is not at all enthusiastic

> about ELL, has nevertheless advocated surgery on the arms -- correcting the

> elbow problem that makes it impossible for people with achondroplasia to

> straighten their arms, and adding maybe an inch or two of length. This is

> not for cosmetic purposes at all -- it's for functioning, personal hygiene,

> etc.

>

> You could make the case that Caitlin chose the wrong part of her body to be

> altered.

>

> Dan

>

> On Thu, Dec 4, 2008 at 4:02 PM, M <petite_isla@...> wrote:

>

>> Hi folks,

>>

>> I was ambivalent about participating in this thread, but since it's

>> going so well I'll throw in my 5 cents.

>>

>> I walked in Caitlin's shoes in the sense of having a life at that age

>> which had no dwarf influence, other than my own experiences. (Mind you

>> I am 52 and those were different times when we still had dinasours

>> walking around.) I strongly suspect (or know in moments of

>> introspection) that if I had been given the option offered to her I

>> would have made a similar choice and for similar reasons. Although I

>> lived in a household and was part of a family that was way too

>> conscious of the physical (imagine living w/3 beauticians), I'm not

>> sure it was about the physical 'beautification' change associated with

>> the increase in height. Perhaps that's because the physical aspects of

>> my dwarfism are more evident than Caitlin's. Or at least to me they

>> seem so, comparing what I looked like at that age, to her pictures. I

>> also for the most part would have also appreciated the freedom that a

>> few more inches gave me and even more as I age and become less stool

>> secure. We did have a stool or 2 in the house and at that point that

>> was all I needed. And many a times heard the " be careful there "

>> warning from adults. We won't talk about climbing on other less secure

>> items like high chairs with wheels! A few accomodations were made for

>> me in school, but honestly not until my freshman year in college and

>> for a photography class involving darkroom work. Maybe more could have

>> been done, but I was resistant and chose to go with minimum

>> intervention (and dangerous high chairs). Now I can see that I wanted

>> to blend in as much as possible. As if we can hide the dwarfism or we

>> ever blend in climbing on precarious furniture.

>>

>> It is unfortunate that the decision for such great change has to be

>> made at such a young age. Bottom line, the 'now or never' window of

>> opportunity is rather small and exacerbates the situation. Even now at

>> 52 I hate when I find myself pushed up against a hard wall and have to

>> weigh out the consequences of a life altering decision. One lives life

>> at that age in a situation where it's all about the mirror and

>> perception, whereas at the age of 52 I've learned to look at it from

>> the inside out. And yet, I find myself having moments now, as I age

>> and the disability affects my mobility even more, where I'd sacrifice

>> enormously to change that which I know cannot be changed. I'm calling

>> this my 'mid-life crisis', no cute expensive car involved!

>>

>> I will say that I am astounded that her parents, in this day and age

>> of Internet access, did not make more of an effort to expose

>> themselves to the 'community' and at least let Caitlin see other

>> possibilities or solutions. For that (in my humble opinion) they

>> should have made time and effort. As we all know it is difficult being

>> different and expecially at an age when we want to blend in. And it

>> helps enormously to see that there are others like us who may also

>> struggle to adapt, but do none the less.

>>

>> And I was more appaled at the doctor's insistance of follow-up surgery

>> for her arms. Or at least to me it seemed that he was more insistant

>> that the mother. I am glad that Caitlin chose to discontinue further

>> enhancements and also that she is doing so well with the outcome of

>> the surgery she did have. Hopefully this is a story with a good ending

>> and it does give her what she needed; whatever that may turn out to

>> be. Everyone has their own threshold for inner strength and hopefully

>> we find our own way of coping without being judged too much by the

>> 'community' we will always belong to, if not join.

>>

>> Interesting discussion folks,

>>

>> =====post below edited to include only relevant information, for space

>> purposes ================

>>

>> At one point in the chat the mother makes a comment that she was

>> terrified of Caitlin falling from a stool--so I assume then that

>> stools weren't used in the house to help her gain some freedom and

>> independence. I think if my mother had coddled me to that point, I

>> probably would have opted for the surgery too.

>>> I was extremely disappointed that the article didn't show any photos

>> of Dahlia. (You can see my comment about that in the chat transcript.)

>>> Cara

>>

>

December 6, 2008

I don't know...

I think that I somehow understood, even as a child, that the uneducated

inexperienced comments made by imature children were quite different than those

made by adults who should know better. Being locked in a locker by classmates,

and missing part of class, was different than being physically picked up by a

greasy garage attendant. Yes, the children were doing something horribly wrong

but...what the garage attendant did, in my humble opinion was criminal. I could

easily list other stuff, but... my fingers would tire listing them all.