Looking for teens who like to talk about her CF

[Guest guest]

Hi,

I usually don't forward messages from Cystic-L, but the one below is worth

it. So if your teen wcf likes to write to another teen, please send Tammie a

note. And please do that privately, she's not (yet) a member of CFparents.

Peace

Torsten, dad of Fiona 6wcf

e-mail: torstenkrafft@...

Subject: little update on

I rarely send updates on my daughter because overall, she goes =

through the " normal " stuff all of you do. Well, right now, she's going =

through a little extra and I thought it might be nice if a couple of you =

who have been through the ringer could send her an email. She doesn't =

really communicate with anyone else with CF, just a couple she runs into =

when she's in the hospital but since we do a lot of home IV, she doesn't =

even see them very often.

She just got off a month of IVs. She missed almost 3 weeks of school. =

She's back at school now but this week she starts donating her blood for =

her upcoming scoliosis surgery. She has it on April 24th. So, Feb. 17 =

to March 17th, IVs; April 22 (whole day at the hospital doing the pre- =

stuff) everything starts up again. She's getting about a 3 week =

reprieve here and even it's full of dr. appts. I know there are a LOT =

of you going through even worse. It's just she's 13, she keeps her chin =

up, doesn't ever complain and I worry sometimes she's just holding it =

in. She's the type kid that always worries about everyone else so she's =

not about to be down or negative or any of that for fear she'd upset =

someone and make them sad. I was hoping that if a few of you in your =

early teens or 20s could email just so she knows it's cool to talk about =

it with someone sometime, you know? I don't want to post her email to =

the list but if you'll email me, I'll get you her personal email. She =

doesn't check hers every day but almost every day. She's too busy on =

AIM.

And, only a kid like would come away from the meeting with the =

docs after hearing the complete recovery from this surgery will take a =

year; the first 3 months she's going to be really restricted, yada, =

yada, yada and what is 's first comment, " HA, HA MOM, I'm going to =

be TALLER than you ARE!! " . I loved it! Her sense of humor is awesome =

as is her compassion for others. I truly believe that's why she does =

handle things so well. =20

My only comment on the whole list deal right now is I believe sometimes =

people aren't looking for someone to " fix " their problems when they come =

here - they're just looking for a place to " dump " because for so many, =

there isn't anywhere you can go to do that where you'll be understood. =

The problem is, with email and reading the written word, the readers =

don't know if this is the email that you want to have help getting your =

problems fixed (get advice) or the email where you just want to dump. =

So, we all need to remember we're not psychic (well, some of us might =

be! and be a little more understanding of the nature of the written =

word. Verbal cues are one of the most helpful things in clear =

communications and since we are missing those through email, we just =

have to be a little more open and understanding on all this.

Thanks in advance to anyone who might want to open up a line of =

communication with . If you've been through the scoliosis =

surgery, even better!

Thanks,=20

Tammie