Re: emo changes & Camp Barnabas()

[Guest guest]

,

It does sound as though you can relate to the emotional changes Nick is going through. It sounds like you and your daughter have been through the gamete. Thanks for your support and concern for my family. You mentioning your daughter not wanting to leave your side back then. Well, I kinda only want to send Nick if his older brother Devin goes. Nick has never been away from home alone except for family, and one good buddy he spends the night with a lot. I thought having Devin there would help him ( and me.) I'm sure Devin would prolly be interested.

in MO.

son, Nick(9)liver disease 09

Subject: Re: emotional changes & Camp BarnabasTo: Date: Monday, March 30, 2009, 10:34 AM

,I feel for you watching the changes in your son. The changes in my daughter's personality in the year before diagnosis with UC were incredibly painful. She went from being a little girl (4 years old at the time) who barely noticed when I left her at the babysitter or daycare - and who was as likely to cry when I picked her up as when I dropped her off - to a clinging child who never wanted to be out of my sight because she couldn't trust anyone else to make sure she made it to the bathroom before her bowels let loose. We were very close to sending her to kindergarten in diapers - but the emotional change was almost as painful to watch as dealing with the medical issues.I haven't had any experience with Camp Barnabas - but personally think it would be a good idea. Our kids are different, and no one wants to be different.

A place like Camp Barnabas sounds like an ideal opportunity to give your son a place where he isn't different - and where the kids can commiserate with peers about what it is like out there in the real world. , Mom to 18 yo daughter UC 6/95, PSC 3/09

From: bowne <hdbowne (AT) yahoo (DOT) com>To: @ yahoogroups. comSent: Monday, March 30, 2009 10:57:09 AMSubject: emotional changes & Camp Barnabas

Hello everyone,

I have a question for you all. My son, Nick, 9years old who struggled with symptoms and problems since last fall was diagnosed with liver disease in 1/09. Since this time he has changed. But he is obviously having a bit of emotional changes.

Anyway, his teacher mentioned Camp Barnabas here in MO. Summer camp with different weeks geared towards kids with different issues. They make summer camp available to kids who would not be able to go to other summers camps without special modifications being made. They are on line and have a week for kids with chronic illness in July.

Anyone have thoughts or experiences with this issue or Camp Barnabas?

[Guest guest]

,

Thanks for your quick reply to my post. Sorry for the long delay in my reply. Been off line unexpectedly. I agree the camp is much like the equivalent to the PSC conference in May. I wonder if some people reallydo think the conference is invaluable. I do want to mention though that it is not that my husband thinks camp is invaluable. I think he is just thinking that we barely found out he's sick now we're gonna ship him off to do all kinds of this "sick" kids stuff all of a sudden. I think a lot of it is just his fears concerning the whole situation. Maybe he and I both don't really want to see and think of Nick as a "sick" kid ourselves. I just don't want to be projecting a bunch of crud on to Nick. I'm glad your program is working well for you. This helps show me that these things are worthwhile. I just figured I have a better chance at dealing and understanding his issues than he does right now, so I can onlyimagine what he and others

have gone through emotionally and all.

Thanks so much for your time,

in MO.

son, Nick(9) liver disease 09

Subject: Re: emotional changes & Camp BarnabasTo: Date: Monday, March 30, 2009, 10:28 AM

Hi ,

basically as i can see it this camp is the adults equavilent to the may conference. How many people here think that the conference is invaluable?! Although the camp isnt just made up of kids with PSC or even liver disease they will all have things in common - pain, fatigue, thoughts of their future etc..

I recently have been going to an expert patient prog here in the UK. although we all had different medical probs the amount of other things we had in common was amazing it really has helped me no end - yes ok i'm not 9 but im still a young one and have had this disease since i was 17. Plus he'll be able to have some indepence from home and have loads of fun - what could be better!!

I think the camp is a fab idea. mayb you should see what Nick thinks?Best wishes