new and need of some support

countryboy47

New member
hello my name is randy. i am 47 yrs old. my youngest daughter had cf. she died of it when she was 9 yrs old. Well this was about 9 yrs ago and i thought all the cf trouble was over and we were lucky to only have 1 child of 5 to have cf. well i was wrong. my olderst daughter who now is 22 yrs old, has been vomitting everyday for the last 6 months, has severe stomach pain, no appeite,gets very tired easy,wheezing in her sleep, consistally coughing and at time mucus comes up, and gets a lot of stomach infections and lung infections; with a few sinus infections which they called sinitus. Well 5 yrs ago when we first moved to fl she was diagnoised with asthma. shes was doing fine until this year. Well her family doctor sent her to see a GI her pancreas isnt working propertly, she has another stomach infection she has fatty stools and so on. he has diangoised her with cystic fibrosis and now she needs to get the final diagnois from the cf foundation. which we go to on the 10th of this month.i feel like its all coming back. we only had 2 daughters. they both love to live and were very kind to people. why must they be the ones who are sick? the only differnce in my 2 daughters is my oldest has a 2 yr old son. i dont want to talk to much about her problem to her. i dont want to upset her. but however i have no one to talk to. its killing me inside. my ex wife isnt really a mom for her. she isnt by her side. she isnt calling her everyday to see how she is doing. where do i go to have someone to talk to? to help me thru this. ive been thru this once. i never dreamed i had to go thru it again.. im scared. im going to lose my other daughter. my only friend passed this thanksgiving. who do i have now to talk to? i know its bad to keep things bottled up. but like i said i dont want to upset her. i just want her to live life to the fullest while she can.
please help me in any way.
my email is gooffylilcorner@aol.com
i hope i can remember how to get back here
thanks for reading
randy
 

thelizardqueen

New member
I suppose it could be a good thing that she was diagnosed so late in life - that could mean a better chance of living longer. I know it must be difficult for you not having people to talk to about this. I'm glad that you found this forum - as there are a lot of knowledgable people on here who will be able to lend an ear. I'll keep you in my thoughts and prayers.
 

JazzysMom

New member
Randy I am so sorry to hear of your news. On a good note the fact that she is dx so late is a sign of how well she has done & it can make things easier for her with the different health problems she has had. I know you are scared of loosing another daughter, but there is a good chance she will outlive you. As far as having someone to vent to that is what we are here for.
 

anonymous

New member
Randy,
Tell your daughter, "look how far you've come."
She has, as that's a good sign. Give her a little time to process this, but I encourage you to be open. Discuss this. Not disscussing this can only add to your family's stress, and especially have a negative impact on her health. We with CF have to work very hard to reduce stress in our lives, and deal with emotional and traumatic things so we can stay healthy. So talk to your daughter. And your grandchild. Let your grandchild know that there is nothing to be afraid of. I would reccomend asking your daughter's doc the name of someone you can talk to (meaning a therapist, grief counselor, ect) to help get through this.
Your child will need to be vigilant in taking care of herself. If she is, she could possibly lead a normal life! But she won't care for her disease properly unless she has accepted it.
Christian, 23, married with CF
 

anonymous

New member
Hi Randy,
I am a 28 year old female w/CF and I was diagnosed at 10.
I am so sorry to hear of the deja vu that you are going thru. Just remember that your girls are different and hopefully your older daughter will fight for her life. It sounds like she has done great so far. Just encourage her as you are. I'm so happy to hear that she has your support especially since your ex is lacking. And it's helpful to know that you are aware of CF and know how to treat it, what to do, what not to do, etc.
If you'd like to e-mail me I am more than welcome listening to you or giving my advice of what I have been through. Be strong for her and remember that even though we are strangers on this forum, we care about you and your situation!
My e-mail is kellimylove@hotmail.com please feel free to contact me with concerns, etc.
Good luck to you Randy and good luck to your daughter!
Sincerely,
KELLI
 

anonymous

New member
As I just re-read what I wrote... let me clarify.
I didn't mean to sound like the 9 year old DIDN'T fight for her life (if you read that it could sound that way.) That was not what I was trying to get across.
I just mean I hope the surviving daughter will fight for her life and give it all she's got to take care of herself and be there for her child. I hope this makes sense. I just came across as a big ididot.
So sorry,
KELLI
 

Faust

New member
Hit me up on yahoo messenger if you want man, i'm around often and i'm considered "A great person to talk to" about anything, especially CF related. I've seen and been through a ton of crap in my life, especially CF related (as im sure others here have as well), and I have a pretty different intraspective way of looking at life. I'm sorry you lost your daughter, that would just absolutely crush me to lose a child, even though i've never felt that bond of being a parent, I can imagine what it must be like. As for "Why do all the wonderful people die young" question. This question is as old as Plato, or older. For some reason in this reality, people who are human cockroaches seem to live forever, and survive everything thrown at them, and those who are pure of spirit, who want to help others and have pure empathy and caring for others, seem to almost always be struck down at a young age. My only answer for this is that those very pure people were sent back here to learn one final lesson that they hadn't learned in their previous lives, and as soon as they learned it, they were taken from us...They were "Old souls", and finally, after many times around, learned that final last part that made them "complete" within the human journey that we all have to take. Those pieces of crap human cockroaches that we seem to have WAY too many of (I personally know many) stick around because they are relatively "Young souls", and have MANY lessons left to learn. Most of those pieces of crap probably go around MANY more times, untill they start learning their lessons and start to become more pure, finally after many lives, with many lessons learned, they learn their final lesson and then in whatever life, they are stricken down also.


I'm not a religious person, but I feel our "lifeforce" has to come from somewhere, and has to go somewhere when we die. Energy is proven to be incapable of being destroyed, it just disipates to somewhere else, or "changes state", like liquid C02 turns to gas, water changes to ice, etc. While there is nothing I can say to truely understand how you are feeling because I have yet to become a parent, after 34 years of thinking, and after about 30 years of deep thinking regarding who we are, why we are here, what everything means, and why those who are so pure and caring die so young and pieces of crap stick around forever, that is my final conclusion, and to me makes the most sense. And if you are religious and believe in god, this conclusion can very well live within your belief structure, just like evolution. "God" (the force of the universe, the creator, whatever overall plan associated with everything in existance, whatever you want to call it), could very well have created evolution + my explained feelings towards reincarnation and our "lessons" we must learn, to work on their own with very little influence from "god".

This general belief helps me deal with things easier, because in the end, we all have a strong need to figure out "Why?" with relation to everything in the human condition. If you want to accept what i've explained, that your daughter was an "old soul", and she was just here for one last lesson, to continue on to whatever ultimate form of existance awaits those who have learned all their "lessons", it would mean that she is now in a MUCH better place, with no binds to her last life besides those souls she shared it with. Other variations of this belief state that everyone you have ever known in any capacity (family, friends, lovers, acquaintances, people you have passing conversations with, etc) are all souls within your "group" that will never go away untill either you or they reach their final lessons. You will never have any less nor anymore people in this group than what you are allotted at the point of your first creation (when you were literally first born into being alive). So your daughter could very well be waiting for you to finish learning your lessons, for you to join her. Just like she is waiting for her sister, her mother, and anyone else. She could very well be in her final ultimate existance with others from her group who learned their final lessons as well.


I hope I might have added a different view, and maybe it has helped you emotionally in some way. If you ever want to talk, im Faust227 on yahoo messenger. I wish you well.
 

damiensmom

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>SeanDavis</b></i><br>Hit me up on yahoo messenger if you want man, i'm around often and i'm considered "A great person to talk to" about anything, especially CF related. I've seen and been through a ton of crap in my life, especially CF related (as im sure others here have as well), and I have a pretty different intraspective way of looking at life. I'm sorry you lost your daughter, that would just absolutely crush me to lose a child, even though i've never felt that bond of being a parent, I can imagine what it must be like. As for "Why do all the wonderful people die young" question. This question is as old as Plato, or older. For some reason in this reality, people who are human cockroaches seem to live forever, and survive everything thrown at them, and those who are pure of spirit, who want to help others and have pure empathy and caring for others, seem to almost always be struck down at a young age. My only answer for this is that those very pure people were sent back here to learn one final lesson that they hadn't learned in their previous lives, and as soon as they learned it, they were taken from us...They were "Old souls", and finally, after many times around, learned that final last part that made them "complete" within the human journey that we all have to take. Those pieces of crap human cockroaches that we seem to have WAY too many of (I personally know many) stick around because they are relatively "Young souls", and have MANY lessons left to learn. Most of those pieces of crap probably go around MANY more times, untill they start learning their lessons and start to become more pure, finally after many lives, with many lessons learned, they learn their final lesson and then in whatever life, they are stricken down also.





I'm not a religious person, but I feel our "lifeforce" has to come from somewhere, and has to go somewhere when we die. Energy is proven to be incapable of being destroyed, it just disipates to somewhere else, or "changes state", like liquid C02 turns to gas, water changes to ice, etc. While there is nothing I can say to truely understand how you are feeling because I have yet to become a parent, after 34 years of thinking, and after about 30 years of deep thinking regarding who we are, why we are here, what everything means, and why those who are so pure and caring die so young and pieces of crap stick around forever, that is my final conclusion, and to me makes the most sense. And if you are religious and believe in god, this conclusion can very well live within your belief structure, just like evolution. "God" (the force of the universe, the creator, whatever overall plan associated with everything in existance, whatever you want to call it), could very well have created evolution + my explained feelings towards reincarnation and our "lessons" we must learn, to work on their own with very little influence from "god".



This general belief helps me deal with things easier, because in the end, we all have a strong need to figure out "Why?" with relation to everything in the human condition. If you want to accept what i've explained, that your daughter was an "old soul", and she was just here for one last lesson, to continue on to whatever ultimate form of existance awaits those who have learned all their "lessons", it would mean that she is now in a MUCH better place, with no binds to her last life besides those souls she shared it with. Other variations of this belief state that everyone you have ever known in any capacity (family, friends, lovers, acquaintances, people you have passing conversations with, etc) are all souls within your "group" that will never go away untill either you or they reach their final lessons. You will never have any less nor anymore people in this group than what you are allotted at the point of your first creation (when you were literally first born into being alive). So your daughter could very well be waiting for you to finish learning your lessons, for you to join her. Just like she is waiting for her sister, her mother, and anyone else. She could very well be in her final ultimate existance with others from her group who learned their final lessons as well.





I hope I might have added a different view, and maybe it has helped you emotionally in some way. If you ever want to talk, im Faust227 on yahoo messenger. I wish you well.<hr></blockquote>
 

anonymous

New member
Hi Randy,
I e-mailed you but it came back to me with an error. I don't know why. But I wanted to let you know I tried, didn't leave you hanging. I'm not sure why that didn't work. Maybe if you e-mail me I can just hit 'reply' to get back to you that way.
~Kelli
 

abloedel

New member
Randy...as a parent myself, I can't even begin to imagine your pain. I am so sorry for your loss. As someone who was dianosed late in life (just this last year), I can give you some advice on helping to support your daughter....

Be as involved as she wants you to be...listen to what she says and I know you will figure it out.
Don't sugar coat anything and allow her to be honest with what is happening, but don't treat her like she's going to "break" if you say or do the wrong thing either.
Hug her and tell her often that you love her.
Help her figure out a plan for her child should she leave this world before her time.

I think knowing all of that will really help her.

You sound like a great dad!!!!

This website is wonderful for support of all kinds...I hope you keep coming to visit!
 
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