Re: My Dyeing Daughters Wish, I pray someone can help me make it a rea...

[Guest guest]

Hi Tammy:

I've read through your entire letter. Now that I've stopped crying, I'd like

to share a few things with you. First & foremost, I think you are one of the

most wonderful, caring, thoughtful & selfless people I've ever heard from,

always thinking of others & their needs & wants. You want to give, give & then

give more, all to others, never once mentioning yourself & it screams from the

roof tops. I admire your strength & courage tremendously.

~~~~~~~~~~~~~~~~~

I also must comment on one thing you said & that really got to me, it was,

" As much as i hate to admit it i feel like I'm a bad parent at times. "

~~~~~~~~~~~~~~~~~

Tammy, from the way you've described your wonderful daughters, their

willingness to help each other (I.E., Your younger daughter helping Crystal) &

even

Crystal doing things when you aren't around, so that you don't get mad at her

for doing things that she knows that you don't want her doing, so clearly shows

what a wonderful parent you are & have always been. I'm sure any parent can

tell you that at times, they have felt the same way. When things go wrong,

those of us that truly care, always think of ourselves first, as the reason that

whatever it is, is going wrong, is happening. It's the one's who aren't, who

look to put the blame or the reason on someone or something else, that aren't.

So, please, please try to put those feeling behind you.

~~~~~~~~~~~~~~~~~

It's sounds as if you have an excellent medical support team & a doctor who

truly cares about you & your children, much more so than most. And you should

truly consider yourself very fortunate that you have this. It is truly very

rare & you can also thank yourself for having it. I say this because, there

are many medical people out there that might do this, but many patient's &/or

their families turn them off or wear them down & they eventually walk away. But

somehow you've managed to " keep them in your corner " & you should feel both

blessed & be commended for it.

~~~~~~~~~~~~~~~~~

As far as Crystal, I do believe that at some point in time, I may have spoken

with her a bit & I recall her being a very strong, tough young lady, sweet,

sensitive, giving & caring. I can now understand her much more, as I now see

where her support team is & you can feel very proud that she is the woman that

she has become. Oddly & often sadly & ironically, adversity in life can make

you a much better, stronger & tougher, yet a more sensitive & caring person.

It seems as though either you go one way & hide from the world & become a very

distant & bitter person, or the delightful young lady, that I recall Crystal,

to be. And again, I believe the origin of all of this, has been the steady &

strong sense of caring & support that you have provided for her.

~~~~~~~~~~~~~~~~~

And, oh, how I wish all of her hopes & dreams could & would come true & in

fact it makes me quite happy that she still clings to all of these things, as

many people would have long since abandoned all of these things, feeling that

since they were unlikely to happen, why even dream at all? So, keeping these

things alive for her, is probably the best thing you could do for her. I have

though, one serious concern about all of this, no matter how idealistic I can

be. And that may come from the more realistic side of me, as I am both a mother

& an RN. And, were Crystal to have to wonderful chance to live " on her own "

in " her own home, " yet be right on your property, it would likely be a dream

come true for you all. And even if someone, thinking completely

idealistically, just gave it to you, I would still have some serious concerns.

And that

would be, that even if she were 1/4 of an acre from you, in an emergency, I

personally, as a mother (this is the Mom in me talking now) would have concerns

that being even that short a distance away, might be too far away, in a true

emergency. Please remember, this is simply my instinct & I truly don't know the

day to day going's on in your home, nor the exact nature, on a daily basis, of

Crystal's situation. But, being very objective, even from your standpoint,

would you lie awake nights wondering if she was OK? Would she fear, after the

initial thrill of being " on her own " eventually get to her? The idea of

exactly this.... of being alone & being so close to you, yet so far. But,

perhaps,

in today's day & age of electronics/technology,perhaps you could put in some

type of emergency call system or " walkie talkie " , in case of an emergency. I'm

not a " technical person " , but I'm sure there must be several types of ways to

deal with this issue. And. the could both give her a sense of independence,

as well as the security of you, being " right there " if needed.

~~~~~~~~~~~~~~~~~

Again, not to be pessimistic, nor optimistic, but being realistic, would

Crystal physically be able to care for a home of her own physically, maintain it

financially & would she be comfortable living by herself, especially since it

sounds as though all their lives, it's been " the 3 of you against the world! " .

And might I remind you that I believe that you have done a wonderful job of

leading yourself & 2 lovely, caring young ladies through this world of ours.

~~~~~~~~~~~~~~~~~

Can you give her a husband, her own family with children & all of that? No.

Can you give her a home of her own? Maybe, just perhaps........ but I think

that before you make that jump or even begin to seriously consider it, it

would be my thinking that both you & Crystal, as well as all 3 of you and then

all

of you & your medical team & perhaps a family counselor of some sort, should

take some serious time & go through all of the pros & cons of making such a

life changing event & then decide whether or not this is truly something you

should seriously consider.

~~~~~~~~~~~~~~~~~

Back to being a mother, I know the feeling of wanting to give everything you

have & don't have, to your children. I myself, along with my husband, built

a custom home, about 19 years ago, that allowed for my husband, myself & our 2

children. yet gave us the ability to utilize the house for just the 2 of us

when our children grew up & moved on to college & so forth (the time which has

since come & gone... they are both graduating from college & going on to grad

school & law school). It was completely handicapped accessible, with many

features built in, that were done for my needs & potential needs, yet were done

in such a way, that truly no one would have noticed, unless it was all pointed

out. It was in a lovely area, just 2 miles from our prior home & was simply

everything a person could want. I loved the house, the area/Our neighbors were

more like family, as it was one of 23 new homes, all built at the same time,

on a dead end street. There was nothing more that a person could dream of.

BUT, and this is the big BUT. As time went by & the economy soured & my EDS

truly began to " blossom " (I was not symptomatic AT ALL, until my late 20's & had

no clue there was anything wrong with me & wasn't even diagnosed until @ 12

years ago, nor had ever even heard of EDS) and then by 1998 I couldn't even work

anymore. And though my husband does decently, his income & my SSDI couldn't

even come close to keeping the house up & also care for my children as I felt

I needed to. So, I simply had no choice & when the taxes hit a number that

would blow anyone away & the upkeep of the house became astronomical & it was

time for the kids to go to college, I/we had no choice, but to sell the house.

(I can still cry about it & realize how stupid that truly is, but I love it

so. After all, it was just a house & a house is the home, where your family

is.) So when our oldest (our daughter who is about to turn 24) was already up &

out & then youngest (our son), who is now about to turn 21 was going to

graduate from High School, we felt we had no choice, but to do what we had to &

that

was to sell the house & downsize, so that we could give all we had to our

children & give them the education, we so desperately wanted them to have.

They've always worked so hard & contributed & somehow God smiled down on us so

graciously & neither of them are affected by EDS, so I felt, just as you do,

that

you had to do what was best for your children & nothing was/is more important.

~~~~~~~~~~~~~~~~~

But sometimes, that desire can be so strong & that's what I'm hearing from

you now, that you can be literally blinded by what might really & truly,

ultimately be the best for all of you now & in the future. And this is why I

felt

compelled to write. I surely don't mean to, nor would ever put the slightest

" damper " on your hopes & dreams for your children & I'd sooner jump off a

bridge, then do that to Crystal, but I just felt that I had to bring up this

issue

of really & truly researching every pro & con, before making any decisions, one

way or the other.

~~~~~~~~~~~~~~~~~

I truly hope that you are able to accept this in the manner in which it is

being sent to you. And, that it with admiration, respect & above all, love &

hope that you consider this & whatever else you may hear through CEDA, as well

as any other sources that I hope you consult & I'm sure it will lead you to do

whatever is best for all of you. And then once you do come to a decision...

stick with it. Never look back & know that whatever decision you ultimately

come to, is the right one. Never question yourself, nor doubt it & always

remember that you made the decision after doing much research & considering all

options & did so for a reason. Doubting yourself at a later time would truly

not

be to anyone's benefit, as you must remember that you've made the decision

with the information & the situation that was real & true at the time you made

it. Never second guess yourself. You've done an amazing job until now &

there's a good reason for it, so never feel differently about what you do it the

future.

~~~~~~~~~~~~~~~~~

Finally, please always know that this is what CEDA is all about. We are a

loving, caring, nonjudgmental & supportive group & one can always feel free to

be

themselves here. I might also suggest that you consult the EDNF website as

well, at Ehlers Danlos National Foundation (this is the link). And if that

doesn't work for you, you can always just type into your browser ednf.org

And, if you aren't a member of the EDNF, no worry. Anyone & I mean anyone

can become a full member of the foundation, even if you are unable to pay the

yearly dues. You simply contact the main office in L.A. & explain that you wish

to be a member but are unable, at this time, to pay the membership fee, if

that is the case. No one is questioned & everyone is taken at their word. If

you are unable to pay it, you are gifted your annual membership. At this time,

for a single yearly membership, the fee is $20 a year & a family membership

is $25 a year, but as I said, to some, that is not doable. Some years one can

pay it & some they can't. We do realize that many people are living on fixed

incomes & are barely scraping by & belonging to the EDNF is much more

important to those who created it & have kept it going then the membership fee.

Does

it help? You bet. But, is it more important than a family having access to

all that we can provide for you? Not a chance!!!!

~~~~~~~~~~~~~~~~~

I shall close by wishing you all of the love I have to give & if you choose

to share this with Crystal, please send her my love, I am quite sure that she

will recognize my email address & perhaps my name. And, on a personal note,

please always fell at anytime, for any reason, I personally will be here for

you, for Crystal & anyone else in your life, if you need me for anything.

~~~~~~~~~~~~~~~~~

I hope I have helped you, in at least some small way & please know that I

send you all my love & as we say, " Gentle hugs " . Wishing you all the best,

Schoenberg

President & Founder

North/Central NJ Chapter EDNF

P.S. Where are you located?

In a message dated 7/6/2004 12:06:14 AM Eastern Daylight Time,

caw1984@... writes:

Hi my name is Tammy I think some of you know my daughter

Crystal. She had told me about this group. I'm not big on knowing

much about computers so Crystal showed me how to use her email

address. She doesnt know why i'm writing though but I am going to

talk to her as soon as I'm done here. Crystal is 19 she'll be 20 in

November she has had to fight her whole life like i'm sure most of

you have. Her EDS has been diagnosed by 3 genetic Dr's as one of a

kind, She fought cancer when she was 5 years old and had a year of

radiation and chemotherapy. She has had numerous surgeries and is

schedualed to have 3 more comming up here in the next few months.

However i have been taking her for several tests and today her DR

called me in alone and wanted to talk to me. I had been telling him

how i notice Crystal is exausted all the time and tries her best to

keep moveing but it's hard for her. She is also in constant pain. Her

Dr tried to expliane to me her condition he said the easiest way is

to just say is is aging very fast. He said her body is in the

Physical condition of a run down woman in her late 60's or so. Her

EDS is effecting her internal organs and there is not much more they

can do she is not strong enough to undergo many surgeries especially

major ones. Then the worst thing he told me and it was difficult for

him to tell me because he has fallowed up ith Crystal since she was

born. But he said she will be very lucky if she lives andother 3 to 5

years. I never wanted to admit that crystal was wearing down but i

can see it more in her every day. My biggest question and I am

desperate for answers for my dyeing daughter. Crystal has always been

as independent as possible she takes care of herself as much as she

can there are just certaint days she needs help. she drives wich may

have to stop soon as she gets worse. But when i'm gone she soes

chores even she does them when I'm gone so i dont get mad at her

because i dont let her do to much. Crystal has always told me of her

dream she has just graduated high school in May. She is not able to

work and she is recieving SSI. Her dream has always been to have a

fmily and live in her own home. She does not have a boyfriend i wish

i could give her that but i cant. But i feel i could at least try to

get her her own home. Problem is i do good as a singel parent i can

barely afford my own home. My situation is I live on 1and a half acer

lot in the country. Crystal loves it here and I feel there is foom on

this lot to put in her own place where that way she could live

independently and I could still be right here if she needs me. See we

live in a mobil home Crystal helped me pay for it with her SSI. But

it's not easy for her to get arond she needs space and deserves so

much more i mean of shes not going to have a long life is there no

way i cant give her what she wants as far as independance. i dont

know where to turn though where can i get help is there any programs

that could maybe get my daughter a doublewide or even a larger

trailer even and set it out here where we are? I want this so much

for her and i dont know where to turn does anyone have any

suggestions. Ovrall i think it would be for t he best. I work as an

EMT but my 16 yearold daughter helps crystal thankfully there is

nothing wrong with her. But i ruptured 3 disks at work and have to

have surgery to get those fixed. As much as i hate to admit it i feel

luike I'm a bad parent at times. I am tring to get some help i just

have a bad temper and go off alot on Crystal i say awful things i

call her lazy and many other things forgetting why she is that way.

Crystal is tense when I'm home because i do get angery when things

get messed up. i dont want Crystal spending the rest of her short

life like that. i want her to have her own home if a t all possible

and i want it out here in the country where she loves it the most. i

want to do this now while there is still time because her time is

running out. If ANYONE can help me with a suggestion I'd be so

greatful.

Thank you

Tammy

[Guest guest]

Tammy

I would like to echo what wote you. We all (as Moms) would like to give

our children the sun , moon & stars, but as I found out after my precious

boy passed on last year, that sometimes it is not possible. Just know youe

are being a terrific Mom to Crystal which I am sure she knows is good enough

.. You love & care for her and that counts for alot. I would worry like Lis,

that if there were an emergency of some sort and how far away Crystal would

be(a totally Mom thing). I hope & pray that Crystal & the rest of your

family can get through this .

My thoughts & prayers are with you.

Betty

Re: My Dyeing Daughters Wish, I pray someone can help me

make it a rea...

> Hi Tammy:

> I've read through your entire letter. Now that I've stopped crying, I'd

like

> to share a few things with you. First & foremost, I think you are one of

the

> most wonderful, caring, thoughtful & selfless people I've ever heard from,

> always thinking of others & their needs & wants. You want to give, give &

then

> give more, all to others, never once mentioning yourself & it screams from

the

> roof tops. I admire your strength & courage tremendously.

> ~~~~~~~~~~~~~~~~~

> I also must comment on one thing you said & that really got to me, it was,

> " As much as i hate to admit it i feel like I'm a bad parent at times. "

> ~~~~~~~~~~~~~~~~~

> Tammy, from the way you've described your wonderful daughters, their

> willingness to help each other (I.E., Your younger daughter helping

Crystal) & even

> Crystal doing things when you aren't around, so that you don't get mad at

her

> for doing things that she knows that you don't want her doing, so clearly

shows

> what a wonderful parent you are & have always been. I'm sure any parent

can

> tell you that at times, they have felt the same way. When things go

wrong,

> those of us that truly care, always think of ourselves first, as the

reason that

> whatever it is, is going wrong, is happening. It's the one's who aren't,

who

> look to put the blame or the reason on someone or something else, that

aren't.

> So, please, please try to put those feeling behind you.

> ~~~~~~~~~~~~~~~~~

> It's sounds as if you have an excellent medical support team & a doctor

who

> truly cares about you & your children, much more so than most. And you

should

> truly consider yourself very fortunate that you have this. It is truly

very

> rare & you can also thank yourself for having it. I say this because,

there

> are many medical people out there that might do this, but many patient's

&/or

> their families turn them off or wear them down & they eventually walk

away. But

> somehow you've managed to " keep them in your corner " & you should feel

both

> blessed & be commended for it.

> ~~~~~~~~~~~~~~~~~

> As far as Crystal, I do believe that at some point in time, I may have

spoken

> with her a bit & I recall her being a very strong, tough young lady,

sweet,

> sensitive, giving & caring. I can now understand her much more, as I now

see

> where her support team is & you can feel very proud that she is the woman

that

> she has become. Oddly & often sadly & ironically, adversity in life can

make

> you a much better, stronger & tougher, yet a more sensitive & caring

person.

> It seems as though either you go one way & hide from the world & become a

very

> distant & bitter person, or the delightful young lady, that I recall

Crystal,

> to be. And again, I believe the origin of all of this, has been the

steady &

> strong sense of caring & support that you have provided for her.

> ~~~~~~~~~~~~~~~~~

> And, oh, how I wish all of her hopes & dreams could & would come true & in

> fact it makes me quite happy that she still clings to all of these things,

as

> many people would have long since abandoned all of these things, feeling

that

> since they were unlikely to happen, why even dream at all? So, keeping

these

> things alive for her, is probably the best thing you could do for her. I

have

> though, one serious concern about all of this, no matter how idealistic I

can

> be. And that may come from the more realistic side of me, as I am both a

mother

> & an RN. And, were Crystal to have to wonderful chance to live " on her

own "

> in " her own home, " yet be right on your property, it would likely be a

dream

> come true for you all. And even if someone, thinking completely

> idealistically, just gave it to you, I would still have some serious

concerns. And that

> would be, that even if she were 1/4 of an acre from you, in an emergency,

I

> personally, as a mother (this is the Mom in me talking now) would have

concerns

> that being even that short a distance away, might be too far away, in a

true

> emergency. Please remember, this is simply my instinct & I truly don't

know the

> day to day going's on in your home, nor the exact nature, on a daily

basis, of

> Crystal's situation. But, being very objective, even from your

standpoint,

> would you lie awake nights wondering if she was OK? Would she fear, after

the

> initial thrill of being " on her own " eventually get to her? The idea of

> exactly this.... of being alone & being so close to you, yet so far. But,

perhaps,

> in today's day & age of electronics/technology,perhaps you could put in

some

> type of emergency call system or " walkie talkie " , in case of an emergency.

I'm

> not a " technical person " , but I'm sure there must be several types of ways

to

> deal with this issue. And. the could both give her a sense of

independence,

> as well as the security of you, being " right there " if needed.

> ~~~~~~~~~~~~~~~~~

> Again, not to be pessimistic, nor optimistic, but being realistic, would

> Crystal physically be able to care for a home of her own physically,

maintain it

> financially & would she be comfortable living by herself, especially since

it

> sounds as though all their lives, it's been " the 3 of you against the

world! " .

> And might I remind you that I believe that you have done a wonderful job

of

> leading yourself & 2 lovely, caring young ladies through this world of

ours.

> ~~~~~~~~~~~~~~~~~

> Can you give her a husband, her own family with children & all of that?

No.

> Can you give her a home of her own? Maybe, just perhaps........ but I

think

> that before you make that jump or even begin to seriously consider it, it

> would be my thinking that both you & Crystal, as well as all 3 of you and

then all

> of you & your medical team & perhaps a family counselor of some sort,

should

> take some serious time & go through all of the pros & cons of making such

a

> life changing event & then decide whether or not this is truly something

you

> should seriously consider.

> ~~~~~~~~~~~~~~~~~

> Back to being a mother, I know the feeling of wanting to give everything

you

> have & don't have, to your children. I myself, along with my husband,

built

> a custom home, about 19 years ago, that allowed for my husband, myself &

our 2

> children. yet gave us the ability to utilize the house for just the 2 of

us

> when our children grew up & moved on to college & so forth (the time which

has

> since come & gone... they are both graduating from college & going on to

grad

> school & law school). It was completely handicapped accessible, with many

> features built in, that were done for my needs & potential needs, yet were

done

> in such a way, that truly no one would have noticed, unless it was all

pointed

> out. It was in a lovely area, just 2 miles from our prior home & was

simply

> everything a person could want. I loved the house, the area/Our neighbors

were

> more like family, as it was one of 23 new homes, all built at the same

time,

> on a dead end street. There was nothing more that a person could dream

of.

> BUT, and this is the big BUT. As time went by & the economy soured & my

EDS

> truly began to " blossom " (I was not symptomatic AT ALL, until my late 20's

& had

> no clue there was anything wrong with me & wasn't even diagnosed until @

12

> years ago, nor had ever even heard of EDS) and then by 1998 I couldn't

even work

> anymore. And though my husband does decently, his income & my SSDI

couldn't

> even come close to keeping the house up & also care for my children as I

felt

> I needed to. So, I simply had no choice & when the taxes hit a number

that

> would blow anyone away & the upkeep of the house became astronomical & it

was

> time for the kids to go to college, I/we had no choice, but to sell the

house.

> (I can still cry about it & realize how stupid that truly is, but I love

it

> so. After all, it was just a house & a house is the home, where your

family

> is.) So when our oldest (our daughter who is about to turn 24) was already

up &

> out & then youngest (our son), who is now about to turn 21 was going to

> graduate from High School, we felt we had no choice, but to do what we had

to & that

> was to sell the house & downsize, so that we could give all we had to our

> children & give them the education, we so desperately wanted them to have.

> They've always worked so hard & contributed & somehow God smiled down on

us so

> graciously & neither of them are affected by EDS, so I felt, just as you

do, that

> you had to do what was best for your children & nothing was/is more

important.

> ~~~~~~~~~~~~~~~~~

> But sometimes, that desire can be so strong & that's what I'm hearing from

> you now, that you can be literally blinded by what might really & truly,

> ultimately be the best for all of you now & in the future. And this is

why I felt

> compelled to write. I surely don't mean to, nor would ever put the

slightest

> " damper " on your hopes & dreams for your children & I'd sooner jump off a

> bridge, then do that to Crystal, but I just felt that I had to bring up

this issue

> of really & truly researching every pro & con, before making any

decisions, one

> way or the other.

> ~~~~~~~~~~~~~~~~~

> I truly hope that you are able to accept this in the manner in which it is

> being sent to you. And, that it with admiration, respect & above all,

love &

> hope that you consider this & whatever else you may hear through CEDA, as

well

> as any other sources that I hope you consult & I'm sure it will lead you

to do

> whatever is best for all of you. And then once you do come to a

decision...

> stick with it. Never look back & know that whatever decision you

ultimately

> come to, is the right one. Never question yourself, nor doubt it & always

> remember that you made the decision after doing much research &

considering all

> options & did so for a reason. Doubting yourself at a later time would

truly not

> be to anyone's benefit, as you must remember that you've made the decision

> with the information & the situation that was real & true at the time you

made

> it. Never second guess yourself. You've done an amazing job until now &

> there's a good reason for it, so never feel differently about what you do

it the

> future.

> ~~~~~~~~~~~~~~~~~

> Finally, please always know that this is what CEDA is all about. We are a

> loving, caring, nonjudgmental & supportive group & one can always feel

free to be

> themselves here. I might also suggest that you consult the EDNF website

as

> well, at Ehlers Danlos National Foundation (this is the link). And if

that

> doesn't work for you, you can always just type into your browser

ednf.org

> And, if you aren't a member of the EDNF, no worry. Anyone & I mean

anyone

> can become a full member of the foundation, even if you are unable to pay

the

> yearly dues. You simply contact the main office in L.A. & explain that

you wish

> to be a member but are unable, at this time, to pay the membership fee, if

> that is the case. No one is questioned & everyone is taken at their word.

If

> you are unable to pay it, you are gifted your annual membership. At this

time,

> for a single yearly membership, the fee is $20 a year & a family

membership

> is $25 a year, but as I said, to some, that is not doable. Some years one

can

> pay it & some they can't. We do realize that many people are living on

fixed

> incomes & are barely scraping by & belonging to the EDNF is much more

> important to those who created it & have kept it going then the membership

fee. Does

> it help? You bet. But, is it more important than a family having access

to

> all that we can provide for you? Not a chance!!!!

> ~~~~~~~~~~~~~~~~~

> I shall close by wishing you all of the love I have to give & if you

choose

> to share this with Crystal, please send her my love, I am quite sure that

she

> will recognize my email address & perhaps my name. And, on a personal

note,

> please always fell at anytime, for any reason, I personally will be here

for

> you, for Crystal & anyone else in your life, if you need me for anything.

> ~~~~~~~~~~~~~~~~~

> I hope I have helped you, in at least some small way & please know that I

> send you all my love & as we say, " Gentle hugs " . Wishing you all the

best,

>

>

> Schoenberg

> President & Founder

> North/Central NJ Chapter EDNF

>

> P.S. Where are you located?

>

>

>

> In a message dated 7/6/2004 12:06:14 AM Eastern Daylight Time,

> caw1984@... writes:

> Hi my name is Tammy I think some of you know my daughter

> Crystal. She had told me about this group. I'm not big on knowing

> much about computers so Crystal showed me how to use her email

> address. She doesnt know why i'm writing though but I am going to

> talk to her as soon as I'm done here. Crystal is 19 she'll be 20 in

> November she has had to fight her whole life like i'm sure most of

> you have. Her EDS has been diagnosed by 3 genetic Dr's as one of a

> kind, She fought cancer when she was 5 years old and had a year of

> radiation and chemotherapy. She has had numerous surgeries and is

> schedualed to have 3 more comming up here in the next few months.

> However i have been taking her for several tests and today her DR

> called me in alone and wanted to talk to me. I had been telling him

> how i notice Crystal is exausted all the time and tries her best to

> keep moveing but it's hard for her. She is also in constant pain. Her

> Dr tried to expliane to me her condition he said the easiest way is

> to just say is is aging very fast. He said her body is in the

> Physical condition of a run down woman in her late 60's or so. Her

> EDS is effecting her internal organs and there is not much more they

> can do she is not strong enough to undergo many surgeries especially

> major ones. Then the worst thing he told me and it was difficult for

> him to tell me because he has fallowed up ith Crystal since she was

> born. But he said she will be very lucky if she lives andother 3 to 5

> years. I never wanted to admit that crystal was wearing down but i

> can see it more in her every day. My biggest question and I am

> desperate for answers for my dyeing daughter. Crystal has always been

> as independent as possible she takes care of herself as much as she

> can there are just certaint days she needs help. she drives wich may

> have to stop soon as she gets worse. But when i'm gone she soes

> chores even she does them when I'm gone so i dont get mad at her

> because i dont let her do to much. Crystal has always told me of her

> dream she has just graduated high school in May. She is not able to

> work and she is recieving SSI. Her dream has always been to have a

> fmily and live in her own home. She does not have a boyfriend i wish

> i could give her that but i cant. But i feel i could at least try to

> get her her own home. Problem is i do good as a singel parent i can

> barely afford my own home. My situation is I live on 1and a half acer

> lot in the country. Crystal loves it here and I feel there is foom on

> this lot to put in her own place where that way she could live

> independently and I could still be right here if she needs me. See we

> live in a mobil home Crystal helped me pay for it with her SSI. But

> it's not easy for her to get arond she needs space and deserves so

> much more i mean of shes not going to have a long life is there no

> way i cant give her what she wants as far as independance. i dont

> know where to turn though where can i get help is there any programs

> that could maybe get my daughter a doublewide or even a larger

> trailer even and set it out here where we are? I want this so much

> for her and i dont know where to turn does anyone have any

> suggestions. Ovrall i think it would be for t he best. I work as an

> EMT but my 16 yearold daughter helps crystal thankfully there is

> nothing wrong with her. But i ruptured 3 disks at work and have to

> have surgery to get those fixed. As much as i hate to admit it i feel

> luike I'm a bad parent at times. I am tring to get some help i just

> have a bad temper and go off alot on Crystal i say awful things i

> call her lazy and many other things forgetting why she is that way.

> Crystal is tense when I'm home because i do get angery when things

> get messed up. i dont want Crystal spending the rest of her short

> life like that. i want her to have her own home if a t all possible

> and i want it out here in the country where she loves it the most. i

> want to do this now while there is still time because her time is

> running out. If ANYONE can help me with a suggestion I'd be so

> greatful.

> Thank you

> Tammy

>

>

>

[Guest guest]

Re: My Dyeing Daughters Wish, I pray someone can help me make

it a rea...

I took Crystal today and got her signed up for Medicaid I am hoping to get

her a scooter chair or something to help her get around she is having more

trouble moving. We have been trying to get one but have had no luck yet. Well

it's late i better go I'll give Crystal your love and i thank you guys for your

support and encourage meant for Crystal she can use it and I'll give her you

love.

Tammy

Tammy - good luck with the w/c or scooter. Has Crystal applied for SSD???

Both my daughter, age 15, and I have EDS Variant. We have symptoms from

several types of EDS.

Bonnie