my daughter

[Guest guest]

hi my name is gail and i have been sitting back and just

reading the mail and really taking in what everyone

talks about. for me i have never even known anybody

besides myself with nf2, it is almost like finding a

family that i never knew about. i am also only 2 weeks

on a computer and terying to teach myself i was

diagnosed with a brain tumor when i was 24 but know

doctor ever told me i had nf2 or much of anything else i

had surgery at UCSANFRANCISCO by the time they found my

tumor it was the size of a tennis ball so you can all

imagine i was left with alot of problems on my entire

right side, i had simptons starting when i was 18 but

this was before ct scans or mri, s even so i remember

going to my doctors and telling them my headaches were

so bad i would go in my closet floor to lay down it was

the only room dark enough and quiet so i could try and

rest, my doc wanted to give me anti depressants or nerve

pills, wanted to know if my husband was mean to me,

wanted me to get a job, told me i needed fresh air i was

to pale, iwent on a interview for a job and the lady

told me i looked to sick, finally i hurt my back one day

went to an er room and te dr on call noticed i had no

feeling in my right foot did a neuro exam and the next

week i was admitted for tests if i had not gone to the

er room that day i probally would have died the dr said

i was very lucky to servive, i was passing out, my

vission was blurry, ad yet none of my family dr even

tried to find the problem, i think being a woman had

alot to do with it, later i found a good neurologist at

kaiser in hayward, i also learned to live with my

disabilities, i moved to stockton in 1980 and found my

neurologist dr abad she is great with me and very honest

she also told me i had nf2, 2yrs. ago m problems were

getting worse and i had a mri and found 3 tumors in my

cervicle spine and 6months later found 2 o my thoracic

spine surgery is not an option i was told by my drs at

UCSF, LAST MONTH I HAD A SET BACK SO I AM SLOWLY GETTING

MY STRENGH BACK, WHAT I REALLY WANTED TO SAY IS THAT I

HAVE AT DIFFERENT TIMES BLAMED MY MOTHER, HER MOTHER

DIED FROM TUMORS, I HAVE BLAMED JUST ABOUT EVERYBODY AT

TIMES OF COURSE I KNOW NO ONE IS TO BLAME BUT HAVING ALL

OF TOSE FEELINGS IS PART OF BEING HUMAN, FEELINGS ARE

NOT FACTS, JUST HOW YOU FEEL AT THE MOMENT. THANK YOU

GAIL DONT TAKE IT T HEART KRI

> Kari,

>

> I have never spoken with you, but just wanted to say, on your comment about

your

> daughter being mad at you. . . I am 30 AND sas diagnosed at 14. To this day

I

> get " angry " at my parents for even conceiving me. I get angry thinking, gee

> maybe if my mom hadnt smoked when she was preganant or something like that.

> BUT.... let me tell you I realize this is dsplaced anger. I love my parents

> dearly and KNOW they would take ths disease from me if they could. So I think

> we get angry because there is no where else to put the anger on. i mean this

> whole thing is the pits, but know your daughter is jsut angry at having the

> disease and possible deafness. You sound like an awesome mom and I personally

> hope for the best for you and her.

>

> cindy

>

[Guest guest]

Kari

I used to ask my daughter why she got so angry only with me and her

reply was that, knowing I loved her, she felt safe expressing her

anger at me. She knew I wouldn't leave her or love her less. If she

was angry with anyone else, they could walk away and leave her. She

was once in hospital for a long time and I used to go in every day

but was always greeted with anger and resentment. It upset me,

obviously, so I suggested she should write a daily journal and

express her feelings on paper.

She was very reluctant to start with but it became an extraordinary

insight into the emotions of a 15 year old with Nf2. She started

aggressively but, by the time she had finished - when she came out of

hospital - she was a completely different person. She had been able

to put down the reasons for being angry - her resentment at being

cooped up in hospital, having balance problems, knowing that her

hearing was deteriorating, etc - and work out for herself a strategy

for dealing with it. After the first few days, the first thing she

wrote was 'goodmorning, diary' and ended with 'goodnight'. It became

a personal friend and, once home, she said a rather reluctant

farewell to her companion.

I have copied the journal to our Support Workers who help people with

Nf2 and they have found it useful.

Don't know if this is of any use, but it worked for Fiona.

All the best

a

[Guest guest]

Dear Crew,

As you all know this past month I've been upset over the results of my

daughters MRI's and the final proof that she has NF2. I already knew, for a

long time, but somehow her having a tumor in her head makes it more of a

reality to me. I don't know why.

Today my daughter found out that a four friends of hers were killed in an

auto accident this past Saturday. When you read about a story like this it

seems that the details happen the same way. Kids, teenagers going too fast

hit another car head on, both cars people die instantly. The one friend of

my daughers, , it was his birthday. She is so upset, so sad. She was

suppose to call him, he had left a message on her machine. Of course there is

never a good day to have an accident and die. Right now she is over at his

mothers house trying to give support as best as she can.

I've written so much about her this past month. Today I can't help but be

thankful that I have my daughter even though I know she will go through life

with NF2. We all have this awful disease, we never feel lucky to have the

disease, but we are lucky to have life. I know there are days that many don't

feel lucky to have life, but we are, just ask mother.

Kari.

[Guest guest]

Hi Kari, I am Carol, mother of Caren or the NYPeachgrl. My daughter was

diagnosed with NF2 when she was 14 yrs. old. We never had it in our family.

Not that we can trace anyway. She has been labeled " new " child. I cannot

even tell you how devistated we were to learn that My little girl had NF.. to

know that my Daughter had Brain tumors. She is a brave and very strong

girl, and she helped me get through most of her surgeries. It hurts to see

your child go through all this and all you can do is be there.. hold her hand

and give her all the love you have to give. That is what I did and still do.

If you ever want to talk .. I am here..

Smile, and please, give your daughter a mega hug.. she deserves it.. and so

do you!

Carol