My young daughter has Ulcerative Colitis

HFD - so sorry for you and your daughter to go thru this.

I had a cancer with a similar surgery to the one you want to avoid.....but, even if it comes to that, your daughter can handle it....the world isn't always fair but you gotta do what you gotta do.

hang tough!

Wow, have been reading this throughout and thinking of your daughter & family since you started updating again. Really feel for you all and cannot imagine the courage for an 8 year old to approach this continuing fight with such bravery. You have no option other than to keep being the great dad you are -- I hope that all of you find a period of relative peace soon to recharge and catch your collective breath. Best wishes Paul/HFD/RockStarOfAdad.

paulonious said:

F Me In The Brain said:

Wow, have been reading this throughout and thinking of your daughter & family since you started updating again. Really feel for you all and cannot imagine the courage for an 8 year old to approach this continuing fight with such bravery. You have no option other than to keep being the great dad you are -- I hope that all of you find a period of relative peace soon to recharge and catch your collective breath. Best wishes Paul/HFD/RockStarOfAdad.

thanks. means a lot. things are tense, to be sure. not easy to keep our sanity. I just keep saying "it could be worse....it could be worse". But it's hard when you haven't actually DEALT with worse.

kids aren't supposed to be sick. they are supposed to be kids. But hey, shit happens. hopefully it will get under control and we can forget about it for a while.

Yeah I can really relate to what you said. I, like everyone else it seems, have my own family health issues right now and they are very impacting. Nobody is dying and things will get better....but I also say 'it could be worse!' frequently....even though I haven't dealt with worse. I know there are worse issues...I can look elsewhere in our family or look to someone like you and draw strength from how well you deal with things. I read your other post about how you are looking for inspiration and have broken your bass and a door. Hell man, as I wrote above, you (and others like you who share the things they are going through on this forum) are an inspiration to us all.

Is it possible to take strength or inspiration from the fact that others find you to be strong and inspiring?

When my father was dying and we had our last phone conversation before I got "the call" we were discussing something and found ourselves on opposite sides of the issue. We just approached things from a completely different viewpoint and personality. His last words to me were...."You are (said my full name)...you are (said my full name) and you know what is right. You are (said my full name) and you will do what is right. Do what is right Brett, I know you can and will."

I have replayed that in every single moment in the last five years when I have questioned what I should do...what the right thing to do was. That single discussion set me up with inspiration for the rest of my life...and that inspiration was to look inside myself and to do what I think is right....to do what I would be able to sit with my father and explain why it was right for me/my family/who I want to be....
I know how calculating a man he was and feel strongly that he thought on that conversation some before we had it and the consequences of our conversation were intended.



For what it is worth, I (we) find strength and inspiration in what you do and in how you support your daughter. Keep it up.....because you will, because you want to, because you have to...and because it is right.

paulonious said:

I didn't think breaking things was a good way of dealing with things. LOL. I honestly don't find myself to be strong in this at all. I was, in the beginning. But I feel like I'm falling apart. I'm not dealing with it well at this point in time. Maybe it seems like it from what I write here, I don't know.

It seems like it to me -- to imagine that you could absorb all of that with/for your family and not have stuff boil over is crazy. Finding a way to share about it here is also strong, even if it is for venting or telling us how you vent. Keep finding a way to be the rock that you certainly appear to be for your family. The only thing to do when someone depends on you and stuff is going wrong is to find a way to make the best out of it and that is what I read you to be doing. That is strength!

paulonious said:

hedonist said:

It's understandable. Hope there's a sense of relief for you and her being back at home.

this past weekend was probably the worst in the history of our family. tantrums and refusing medication and yelling and crying. being in the hospital was a breeze compared to this right now.

"this too shall pass.......this too shall pass........."

paulonious - I am so sorry that you and your daughter and your family are going through this. I would see refusing medication and yelling as a good sign, even though it certainly doesn't feel like it when you are in the midst of it. For her to put her foot down and refuse meds and yell about it, she had to feel strong enough to do it, which means she is probably getting better, at least a bit. Of course, she wouldn't have that fit in the hospital, because she didn't feel well enough, and because she was in an uncomfortable environment. She is back home and completely comfortable with you and she was going to let that anger and frustration out. Her stress level had hit its peak, poor girl. At least that was the way that it worked with my son. He was sick off and on, and hospitalized several times for two years before the docs finally diagnosed him and put him on the right path.

I am so aware of the frustration and despair that you are feeling right now. During that two year stretch, when we didn't know what was causing his problems, it was so hard to imagine things improving. I felt like I was in a deep, black hole that I wasn't sure I could get out of. I would suggest finding a picture of you and your family when things were good. Some event or time when you were all happy and healthy and having a great time. Carry that around with you to focus on when life is just overwhelming, and keep reminding yourself that you will have good days again. There may be times when you think that you can't do this one day at a time thing any more. That was when I had to start breaking it down into one hour at a time, or even one minute at a time. I can endure anything for one minute.

Getting some family counseling is never a bad idea. Having someone so sick is a huge stressor for the whole family. It was a good healthy place to vent for ours.

It truly sucks to have a sick child. Keep us updated, and vent when you need to. Know that we are rooting for you and especially for her.

paulonious said:

she was actually doing the same thing (refusing meds) in the hospital. the nursing staff were at their wits end. one of them said "this stubbornness will work in her favour one day, but now.....ARGH". So true. I was thinking the same thing at the time, trying to take anything positive out of it, like "one day, when a boy (or girl) is insisting she do something she doesn't want to, she'll be strong".

LOL! Good for her, and good for you for looking for the positive. Keep doing that. Have you tried bribery? Some kind of sweet treat that she doesn't ordinarily get, but really likes. Just a little somethin? Worked for my kiddo - - and truly some of those meds taste horrible.