My Dyeing Daughters Wish, I pray someone can help me make it a reality

[Guest guest]

Hi everyone 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