Re: daughter

[Guest guest]

Lucille,

Sorry that your daughter has joined the rest of us with this

disease. My advise is to let your daughter lead the way as far as

when she wants to discuss her condition and as to what she wants to

share with you. Don't tell her that things will be okay etc. This is

not an easy disease and things won't be okay, life will be more of a

rollercoaster ride for her now depending on how far along she is.

There will be Down days, tired days, itchy days, frustrating days,

emotional days, and yes the okay days... when you actually get to

forget for awhile that you are sick and just get to enjoy yourself

and your friends and family. So instead of things being okay, things

will be different from life before PSC.

Let her lead the way with how much she wants to do and when. If she

is uncomfortable about going out at times, even if it is last minute,

you have to understand and don't push.

I'd say most of all don't hover. That only makes someone (at least

me) feel worse. For me I don't want to be treated differently, I

just want people to understand that sometimes and some days, I'm just

not up to doing some things.

My husband does a wonderful job in his support of me. He is a sports

fanantic and we could be at any important playoff game (hockey,

basketball... whatever) and if he looks at me and sees I'm

struggling. He always says let's go... this game is not as important

as you are. Usually, I try my best to hang in there, cause I like

the games too, but it is such a comfort knowing that without a doubt,

my well being comes first.

Good luck finding your way to support your daughter.

[Guest guest]

LucilleI have not checked my email for a long time so I know this is very late in answer to your question. How old is your daughter? My son was diagnosed at 11. I am a nurse and did extensive research into this disease when he was diagnosed. I did not find this website until he was 19 and had his tx. always asked me to be honest with him so I was. When I look back I realize I was too honest. Because he knew how bad this was he did not have the opportunity to be a child. After he had his tx and went back to college he became a handful all of a sudden. He finally said to me that he did not know what to do with his life because he did not plan to be alive. I realize that we were not optimistic as he was growing up. Allow her to vent, talk or be silent. It is like teach sex education. Do not give more than she can handle. Make sure you take care of

yourself as well. This disease is not your fault but you will feel like it is. Every time she sneezes you will want to smother her. If did something that he should be disciplined for I made sure he was so I was not raising a monster. Good luck.Marti Subject: daughterTo: Date: Friday, March 28, 2008, 6:48 PM

I would like to sign up for your support group. My daughter has recently been diagnosed with PSC. She has joined the group and has gotten some very halpful info and support. I as a mother am very concerned for her but I don't really know what to say to her. She is going through so many different emotions and it seems I never say the right things. Some of you have had more time to deal with this diagnosis. What could your families do to be more supportive? I am sorry any of you have this desease. My prayers are with you anf for a cure.

Thank you,

Lucille ( a very concerned mom) ldeblieck (AT) prodigy (DOT) net