Paulonious, does the clinic/hospital that your daughter is treated at offer any help or support with this? I would hope that the hospital has at least a Child Life Specialist, whose job it is to help make medical treatments and time in hospital less traumatic and more acceptable to kids. Or perhaps your daughter could work with someone who can do some child-oriented cognitive behavioural therapy?
You are right, this too shall pass and eventually she'll be old enough to understand what needs to be done for her to stay healthy, but if there is any help you can get along the way there then give it a try.
my small self... like a book amongst the many on a shelf
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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.
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.
Flight Risk out NOW!
www.headstonesband.com
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F Me In The Brain
this knows everybody from other commets Posts: 30,617
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.
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.
Flight Risk out NOW!
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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!
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.
And the sun it may be shining . . . but there's an ocean in my eyes
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".
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.
And the sun it may be shining . . . but there's an ocean in my eyes
Some pharmacies will add flavors to the meds, but some of the meds are so bad that even that won't cover it up. My boy took one that the doctor suggested adding chocolate syrup to. She said it was what the nurses in the hospital did. I was really happy when he realized he could take pills. LOL
And the sun it may be shining . . . but there's an ocean in my eyes
yeah, the chocolate syryp thing for her prednisone is what we do now. I thought of that after nothing else worked. crush the pills into dust, add it to chocolate syryp, and voila.
I was trying the "it could always be worse" for myself but someone told me "just because it could be worse, that doesn't make what you're going through any better."
does that make sense? I don't have kids....I can only imagine how terrible this must be...sick dogs are heartbreaking enough. There are some great people on this board who will do what they can to help....I hope their words, prayers, vibes, mojo, whatever are of some comfort to you.
If I had known then what I know now...
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
I was trying the "it could always be worse" for myself but someone told me "just because it could be worse, that doesn't make what you're going through any better."
does that make sense? I don't have kids....I can only imagine how terrible this must be...sick dogs are heartbreaking enough. There are some great people on this board who will do what they can to help....I hope their words, prayers, vibes, mojo, whatever are of some comfort to you.
yeah, that's something that dawned on me too, the "well it could be worse, but I don't know THAT worse, so it's not much comfort", as much as I try to keep that mantra.
I told my wife a few minutes ago that we are getting a sitter and going out and enjoying ourselves this weekend, and I won't take no for an answer (she said no last weekend).
I told my wife a few minutes ago that we are getting a sitter and going out and enjoying ourselves this weekend, and I won't take no for an answer (she said no last weekend).
Hope she likes nachos, beer, and UFC. LOL.
UFC is full of juicers.
If I had known then what I know now...
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
Guess it is too cold in The Peg right now to do much outside. It is damn freezing in New Jersey and that is far south compared to where you are. Nachos, Beer, and UFC has to sound good to anyone right now. (At least the nachos & beer with the one you love part)
yeah, it's doubtful we'll watch ufc. she sees me watching enough of that at home on ufc fight pass. and yes, it's EFFING COLD here. I sent her an email this morning saying I was done with this weather. time to move to Canada's Florida: Vancouver!
I told my wife a few minutes ago that we are getting a sitter and going out and enjoying ourselves this weekend, and I won't take no for an answer (she said no last weekend).
I was trying the "it could always be worse" for myself but someone told me "just because it could be worse, that doesn't make what you're going through any better."
does that make sense? I don't have kids....I can only imagine how terrible this must be...sick dogs are heartbreaking enough. There are some great people on this board who will do what they can to help....I hope their words, prayers, vibes, mojo, whatever are of some comfort to you.
yeah, that's something that dawned on me too, the "well it could be worse, but I don't know THAT worse, so it's not much comfort", as much as I try to keep that mantra.
I told my wife a few minutes ago that we are getting a sitter and going out and enjoying ourselves this weekend, and I won't take no for an answer (she said no last weekend).
Hope she likes nachos, beer, and UFC. LOL.
Speedy might have some spare Barry Manilow tickets for you?
Hey, seriously, hang in there and be kind to yourselves. You have a tough row to hoe but we'll help you through and you will get through it. With some tears, no doubt, but laughter too. I know, while not having to go through what others on here have or what you're dealing with, I have seen them pull through and I have saved my sanity, more than a few times. I'll send positive Chi and healing thoughts your way and know things will work out and end up alright.
Now go drink beer, eat nachos and listen to Barry croon.
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
still planning some alone time for you and the missus?
If I had known then what I know now...
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
haha, this seems like a private conversation out in the open. but yes, we are most likely heading out saturday night. probably to see a comedian. Ian Bagg I believe.
Flight Risk out NOW!
www.headstonesband.com
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F Me In The Brain
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haha, this seems like a private conversation out in the open. but yes, we are most likely heading out saturday night. probably to see a comedian. Ian Bagg I believe.
His brother Douche is awesome. (Sorry, couldn't resist)
haha, this seems like a private conversation out in the open. but yes, we are most likely heading out saturday night. probably to see a comedian. Ian Bagg I believe.
His brother Douche is awesome. (Sorry, couldn't resist)
laughter can be good medicine. Sometimes it's true that "if I wasn't laughing, I'd be crying."
If I had known then what I know now...
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
been a while since I've updated this. She's been symptom free since the last time I posted in this thread. there have been a few times we've had to adjust her medication, but by and large, she's good. the biologic infusions work.
now it's just the horomones of a pre-teen that are our biggest hurdle.
all 4 of us are walking in the Crohn's and Colitis GUTSY Walk again June 4th. Last year she was one of the top pledge earners in the province.
her little sister, who is 7, came to her last night with $2 of her own limited cash and said she wanted to donate to her cause.
I nearly cried on the spot. My eyes are welling up as I type this.
been a while since I've updated this. She's been symptom free since the last time I posted in this thread. there have been a few times we've had to adjust her medication, but by and large, she's good. the biologic infusions work.
now it's just the horomones of a pre-teen that are our biggest hurdle.
all 4 of us are walking in the Crohn's and Colitis GUTSY Walk again June 4th. Last year she was one of the top pledge earners in the province.
her little sister, who is 7, came to her last night with $2 of her own limited cash and said she wanted to donate to her cause.
I nearly cried on the spot. My eyes are welling up as I type this.
Great news, Hugh.
Your little one has a sweet heart. Wonder where she gets it from?
Comments
You are right, this too shall pass and eventually she'll be old enough to understand what needs to be done for her to stay healthy, but if there is any help you can get along the way there then give it a try.
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.
www.headstonesband.com
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.
www.headstonesband.com
www.headstonesband.com
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.
www.headstonesband.com
I honestly cannot for the life of me figure out why they won't make these meds in some type of kid flavour. seriously, how hard would it be?
www.headstonesband.com
www.headstonesband.com
does that make sense? I don't have kids....I can only imagine how terrible this must be...sick dogs are heartbreaking enough. There are some great people on this board who will do what they can to help....I hope their words, prayers, vibes, mojo, whatever are of some comfort to you.
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
I told my wife a few minutes ago that we are getting a sitter and going out and enjoying ourselves this weekend, and I won't take no for an answer (she said no last weekend).
Hope she likes nachos, beer, and UFC. LOL.
www.headstonesband.com
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
Guess it is too cold in The Peg right now to do much outside. It is damn freezing in New Jersey and that is far south compared to where you are.
Nachos, Beer, and UFC has to sound good to anyone right now. (At least the nachos & beer with the one you love part)
www.headstonesband.com
www.headstonesband.com
Hey, seriously, hang in there and be kind to yourselves. You have a tough row to hoe but we'll help you through and you will get through it. With some tears, no doubt, but laughter too. I know, while not having to go through what others on here have or what you're dealing with, I have seen them pull through and I have saved my sanity, more than a few times. I'll send positive Chi and healing thoughts your way and know things will work out and end up alright.
Now go drink beer, eat nachos and listen to Barry croon.
Libtardaplorable©. And proud of it.
Brilliantati©
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
www.headstonesband.com
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
www.headstonesband.com
(Sorry, couldn't resist)
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
now it's just the horomones of a pre-teen that are our biggest hurdle.
all 4 of us are walking in the Crohn's and Colitis GUTSY Walk again June 4th. Last year she was one of the top pledge earners in the province.
her little sister, who is 7, came to her last night with $2 of her own limited cash and said she wanted to donate to her cause.
I nearly cried on the spot. My eyes are welling up as I type this.
www.headstonesband.com
www.headstonesband.com
Your little one has a sweet heart. Wonder where she gets it from?