Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 That's great Joan. Now you know why I am working so hard for this foundation. So that for people like your son, there is a chance that we can change the course of this disease through research. You and I will turn our anxieties into proactive work while your son and mine handle the attitude they need while they take care of their own health. Lee > Just wanted to share a very special moment with all of you, especially > those of you who are parents to pscers. > Last night over dinner my eighteen year old son and I got to talking > about stuff and somehow I mentioned (foolishly) how his sister ought > to be taking good care of her liver just in case he might need it some > day. He rolled his eyes and registered irritation and I lapsed into > my usual concern that he is in denial. He looked at me and told me > that I need to get a grip and be less obsessed with " his " problem > which he informed me he did indeed understand the gravity of. He > calmly explained to me that he knew that his future was uncertain but > that he also understands that nothing bad is imminent and that > although he plans to live his life fully, he also plans to manage his > illness well while keeping it in the backgound for as long as > possible. He also emphasized that there is no point in focusing on > the problem when no one knows what science may bring. All of this > from a teenager who has shared so little up to this point as to how he > was really dealing with psc! I feel that I can let go and launch him > as he goes off to college and that he is taking adult ownership of his > disease and its management. He hasn't been in denial after all; he > was just being mature and demonstrating a positive outlook on life. I > am relieved and proud. > Joan >> Many Thanks >> >> Hi all, >> I probably won't be posting much before surgery. I have so many loose >> ends to tie up and so many people with whom I need to spend time. (My >> father is throwing a tantrum this very minute because he feels hurt >> about how I've chosen to line up help for this thing...I'm already >> irritating people and I haven't even started the mega-doses of >> prednisone. Lookout world!!!) >> >> Anyway, I just wanted to say a great big thank you to each and every >> one of you for all your help and support. For every one of you who >> have expressed how I've helped you over the past year or so, I've >> received that same kind of support ten-fold from this group. Without >> this group, I wouldn't have multi-listed, I would have been more >> reluctant to allow Mike to be my living donor, and I would probably >> have remained the big, grumpy chicken I so often have felt like >> inside. You all have given me the strength and inspiration to embark >> on what I know will be a difficult journey with both hope and lots of >> positive energy. >> >> The complements on the poem were nice to hear, too. Thank >> (MO) for convincing me to share it. When I shared it with Mike, it >> was the one time since we started the living donor transplant journey >> that I've seen him tear up. He really is my big teddy bear! Although >> he hasn't joined this group, Mike also has benefitted from your >> experiences, too. I'm forever saying how each of you is handling a >> different aspect of the disease, and of course, he's the first to ask >> me about the new research I've read on here. Thank you from both of >> us. >> >> I know each of you will be praying for us - I'll keep your thoughts >> and prayers next to my heart this entire week. I'll also be praying >> for each of you as I always do! >> >> Love, >> Deb in VA () >> PSC 1998, UC 1999, Listed Ltx 2001, HE 1/2005, MELD 19, LDLTX >> scheduled this Thursday! >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 Joan, You should be so proud of 's incredible maturity and postive outlook. What a special guy he must be! Hopefully, after that conversation, you'll be able to not worry so much when he goes off to college next fall. He is certainly doing a fantastic job of dealing with PSC. Ricky Many Thanks Hi all,I probably won't be posting much before surgery. I have so many loose ends to tie up and so many people with whom I need to spend time. (My father is throwing a tantrum this very minute because he feels hurt about how I've chosen to line up help for this thing...I'm already irritating people and I haven't even started the mega-doses of prednisone. Lookout world!!!) Anyway, I just wanted to say a great big thank you to each and every one of you for all your help and support. For every one of you who have expressed how I've helped you over the past year or so, I've received that same kind of support ten-fold from this group. Without this group, I wouldn't have multi-listed, I would have been more reluctant to allow Mike to be my living donor, and I would probably have remained the big, grumpy chicken I so often have felt like inside. You all have given me the strength and inspiration to embark on what I know will be a difficult journey with both hope and lots of positive energy. The complements on the poem were nice to hear, too. Thank (MO) for convincing me to share it. When I shared it with Mike, it was the one time since we started the living donor transplant journey that I've seen him tear up. He really is my big teddy bear! Although he hasn't joined this group, Mike also has benefitted from your experiences, too. I'm forever saying how each of you is handling a different aspect of the disease, and of course, he's the first to ask me about the new research I've read on here. Thank you from both of us.I know each of you will be praying for us - I'll keep your thoughts and prayers next to my heart this entire week. I'll also be praying for each of you as I always do!Love,Deb in VA ()PSC 1998, UC 1999, Listed Ltx 2001, HE 1/2005, MELD 19, LDLTX scheduled this Thursday! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 Joan Sounds like a winning plan to me.Glad to hear it. All the Bestjd, 44UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3ston City, ILkrmpotich@... wisdom of the young Just wanted to share a very special moment with all of you, especially those of you who are parents to pscers. Last night over dinner my eighteen year old son and I got to talking about stuff and somehow I mentioned (foolishly) how his sister ought to be taking good care of her liver just in case he might need it some day. He rolled his eyes and registered irritation and I lapsed into my usual concern that he is in denial. He looked at me and told me that I need to get a grip and be less obsessed with "his" problem which he informed me he did indeed understand the gravity of. He calmly explained to me that he knew that his future was uncertain but that he also understands that nothing bad is imminent and that although he plans to live his life fully, he also plans to manage his illness well while keeping it in the backgound for as long as possible. He also emphasized that there is no point in focusing on the problem when no one knows what science may bring. All of this from a teenager who has shared so little up to this point as to how he was really dealing with psc! I feel that I can let go and launch him as he goes off to college and that he is taking adult ownership of his disease and its management. He hasn't been in denial after all; he was just being mature and demonstrating a positive outlook on life. I am relieved and proud. Joan Quote Link to comment Share on other sites More sharing options...
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