Partner's son has cf?? looking for advice

T

totallynew30

New member
<span class="postbody">Hi, and I really appreciate you reading this post. I'm at a bit of a loss as I don't really know where to turn. Even if you just read this that will help me to know my feelings are normal. I hope xxxxI have recently fell in love. My partners son has CF and was diagnosed as a baby. He is 7 now and such a brilliant, wonderful active kid, and I adore him. To be honest I didn't have any clue what cf was about until I met him, then I started reading up about it. Many long days/night trying to find out as much information as I could. I adore my partner, I've actually never met anyone like him and we make each other happy. We both have families and want to build a life together. Basically, I will do everything I can to support him and his son. I also have a son of my own who's 12. The thing is, I need to ask questions. We do talk about everything but I'm getting the feeling that he really feels so hopeless about his son's condition and feels that he may deteriorate very quickly. He is estranged from his ex but he sees his kids a few times a week and is the most wonderful dad I've ever seen. He totally breaks down and thinks his son is gong to die. He's only 7. My partner 's outlook seems so bleak for his son, and I have no idea if this is normal or fact. He keeps saying his son's cf is worse than normal and he has recently been told to see a gastroeterologist as his liver may be deteriorating. Is anyone else in my shoes? I'd love to talk to others, or just anyone who can talk to me and give me more information.
<span class="postbody">Lots of love xxx
 
T

totallynew30

New member
<span class="postbody">Hi, and I really appreciate you reading this post. I'm at a bit of a loss as I don't really know where to turn. Even if you just read this that will help me to know my feelings are normal. I hope xxxxI have recently fell in love. My partners son has CF and was diagnosed as a baby. He is 7 now and such a brilliant, wonderful active kid, and I adore him. To be honest I didn't have any clue what cf was about until I met him, then I started reading up about it. Many long days/night trying to find out as much information as I could. I adore my partner, I've actually never met anyone like him and we make each other happy. We both have families and want to build a life together. Basically, I will do everything I can to support him and his son. I also have a son of my own who's 12. The thing is, I need to ask questions. We do talk about everything but I'm getting the feeling that he really feels so hopeless about his son's condition and feels that he may deteriorate very quickly. He is estranged from his ex but he sees his kids a few times a week and is the most wonderful dad I've ever seen. He totally breaks down and thinks his son is gong to die. He's only 7. My partner 's outlook seems so bleak for his son, and I have no idea if this is normal or fact. He keeps saying his son's cf is worse than normal and he has recently been told to see a gastroeterologist as his liver may be deteriorating. Is anyone else in my shoes? I'd love to talk to others, or just anyone who can talk to me and give me more information.
<span class="postbody">Lots of love xxx
 
W

welshwitch

Guest
It's really easy to overreact/get scared about CF, especially when you are surrounded by bad news and scary stories all the time! Does your partner have CONCRETE information about what's going on? What does the doctor say? Could you go to a doctor appointment next time and ask some questions?

Realizing reality vs. "what could happen" is very important for managing CF. I admit , everyone's parents, including mine, were scared. The problem is, I took cues from them and got really scared too. It wasn't until I was an adult and really took control of educating myself about what was going on did I get over that.

"What ifs" are going to wear you down. I refuse to live as a slave to that mentality. I am a healthy adult with CF who isn't going anywhere any time soon....as are many people on this site ! Feel free to ask any questions, but education is key, and not giving into the fear/statistics/outdated websites (stay away from Google too....dangerous) <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

welshwitch

Guest
It's really easy to overreact/get scared about CF, especially when you are surrounded by bad news and scary stories all the time! Does your partner have CONCRETE information about what's going on? What does the doctor say? Could you go to a doctor appointment next time and ask some questions?

Realizing reality vs. "what could happen" is very important for managing CF. I admit , everyone's parents, including mine, were scared. The problem is, I took cues from them and got really scared too. It wasn't until I was an adult and really took control of educating myself about what was going on did I get over that.

"What ifs" are going to wear you down. I refuse to live as a slave to that mentality. I am a healthy adult with CF who isn't going anywhere any time soon....as are many people on this site ! Feel free to ask any questions, but education is key, and not giving into the fear/statistics/outdated websites (stay away from Google too....dangerous) <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
I have a relative who we see a couple times a year who gets so very wrapped up in the statistics, websites, what ifs that she never seems to see DS for what he is -- a wild, entertaining, normal, loveable little boy and instead sees him as a sickly child. And she misses out because she really doesn't get to know him for who he is.

It's so easy to get carried away with the worrying and what ifs, especially if one is waiting for test results or if something seems a little off. As a parent I'm always waiting for the other shoe to drop, worried about getting to complacent or comfortable... One of DS' doctors early on told us to try to allow ourselves to worry about CF a few minutes of each day -- otherwise to enjoy our child, focus on keeping him happy and healthy.

DS is a normal, active child who just happens to have CF. We do vest and neb treatments, give him medication to keep him that way. And I do have my moments where I'm absolutely terrified -- usually it's if he's gotten a fever, throws up out of the blue, develops a little cough --- but for the most part keep it together.

All you can really do is take cues from your partner in terms of what he wants to share with you and how active he wants you to be in his child's life and care.
 
R

Ratatosk

Administrator
Staff member
I have a relative who we see a couple times a year who gets so very wrapped up in the statistics, websites, what ifs that she never seems to see DS for what he is -- a wild, entertaining, normal, loveable little boy and instead sees him as a sickly child. And she misses out because she really doesn't get to know him for who he is.

It's so easy to get carried away with the worrying and what ifs, especially if one is waiting for test results or if something seems a little off. As a parent I'm always waiting for the other shoe to drop, worried about getting to complacent or comfortable... One of DS' doctors early on told us to try to allow ourselves to worry about CF a few minutes of each day -- otherwise to enjoy our child, focus on keeping him happy and healthy.

DS is a normal, active child who just happens to have CF. We do vest and neb treatments, give him medication to keep him that way. And I do have my moments where I'm absolutely terrified -- usually it's if he's gotten a fever, throws up out of the blue, develops a little cough --- but for the most part keep it together.

All you can really do is take cues from your partner in terms of what he wants to share with you and how active he wants you to be in his child's life and care.
 
S

Shelly43

Guest
Hello,

I'm gad to hear your exploring and learning more, instead of taking everything at face value...I spent the first two years after my son Dx grieving and being overwhelmed.

My son is 13 and when he was diagnosed at age 3 1/2 we we're given a book from the CF foundation..... and had a doctors helper who was to explain everything. But to be honest she was a very down person and gave us all negative information..... I spoke to one of the nurses later who said that she thought this woman had tried to scare us badly so we would take our sons illness seriously... She said she had seen too many parents who didn't seem to think it was a big deal and ignored the treatments...All the nurses said it was very disturbing to watch children die knowing no one had given them proper care early. It took me years to learn that it's not all that negative stuff was quite as real as the woman told me...It can happen but taking care helps....Lots of time exploring the net and talking to respitatory therapists and nurses gave me a bigger, clearer insight. Like that by age 16 he would have to have a lung transpant no matter what and we should start figuring out how to fund it now? My son is 13.. I'm not saying he won't catch a bug and need that by age 16 but right now? I'm say I don't think so...

CF can rule your partner and his childs life if they allow it too. Or they can fight it and make the most of every good day they have, insuring more good days with good care.....Consistant and proactive care is the best....But don't forget to live. There are some wonderful new drugs for CF being delevoped and our doctor assures us the cure is coming in my sons life time....

There are hard days and harder days, there is fear around every corner...But I'm not scared every time someone coughs in the store behind us or he falls asleep before supper. Every hospital visit scared me, now I see an oppertunity to learn. His coughing blood still scares me, peeing blood makes my blood run cold. But we've gotten through it and moved on... And the next time it's not so scary... Life is never boring with my son around. But there's lots of joy in the good times....
 
S

Shelly43

Guest
Hello,

I'm gad to hear your exploring and learning more, instead of taking everything at face value...I spent the first two years after my son Dx grieving and being overwhelmed.

My son is 13 and when he was diagnosed at age 3 1/2 we we're given a book from the CF foundation..... and had a doctors helper who was to explain everything. But to be honest she was a very down person and gave us all negative information..... I spoke to one of the nurses later who said that she thought this woman had tried to scare us badly so we would take our sons illness seriously... She said she had seen too many parents who didn't seem to think it was a big deal and ignored the treatments...All the nurses said it was very disturbing to watch children die knowing no one had given them proper care early. It took me years to learn that it's not all that negative stuff was quite as real as the woman told me...It can happen but taking care helps....Lots of time exploring the net and talking to respitatory therapists and nurses gave me a bigger, clearer insight. Like that by age 16 he would have to have a lung transpant no matter what and we should start figuring out how to fund it now? My son is 13.. I'm not saying he won't catch a bug and need that by age 16 but right now? I'm say I don't think so...

CF can rule your partner and his childs life if they allow it too. Or they can fight it and make the most of every good day they have, insuring more good days with good care.....Consistant and proactive care is the best....But don't forget to live. There are some wonderful new drugs for CF being delevoped and our doctor assures us the cure is coming in my sons life time....

There are hard days and harder days, there is fear around every corner...But I'm not scared every time someone coughs in the store behind us or he falls asleep before supper. Every hospital visit scared me, now I see an oppertunity to learn. His coughing blood still scares me, peeing blood makes my blood run cold. But we've gotten through it and moved on... And the next time it's not so scary... Life is never boring with my son around. But there's lots of joy in the good times....
 
P

pozzy

New member
I am a very positive person but sometimes reality really hits and the reality is that this is a scary disease because you never know what tomorrow is going to bring. He is morning and scared. The best thing to do is to just be there for him. It is often difficult to share with others those fears and it is a good thing he is sharing with you. The important thing is to allow him to grieve and be scared with you so he doesn't show it in front of his son. He needs to have a positive outlook in front of him and never restrict his ability to live a full life.
 
P

pozzy

New member
I am a very positive person but sometimes reality really hits and the reality is that this is a scary disease because you never know what tomorrow is going to bring. He is morning and scared. The best thing to do is to just be there for him. It is often difficult to share with others those fears and it is a good thing he is sharing with you. The important thing is to allow him to grieve and be scared with you so he doesn't show it in front of his son. He needs to have a positive outlook in front of him and never restrict his ability to live a full life.
 
S

SunnyK

New member
Itoo am dating a man who's daughter age 9 has CF...I knew a little about cf because I have been an LPN for 12 years but nothing could have prepared me for help to parent a child with CF. He has joint custody so she is with us half the time. learn as much as you can about his treatments and meds. The more you know the less scary it becomes! This site has helped me so much to see how other parents do things and connect with others in our situation!
 
S

SunnyK

New member
Itoo am dating a man who's daughter age 9 has CF...I knew a little about cf because I have been an LPN for 12 years but nothing could have prepared me for help to parent a child with CF. He has joint custody so she is with us half the time. learn as much as you can about his treatments and meds. The more you know the less scary it becomes! This site has helped me so much to see how other parents do things and connect with others in our situation!
 
M

MamaDee

Guest
I am so glad you came to this site. I don't post a lot, but just by reading I have learned a ton! My son has CF and is 2.5, he has been super healthy, thank god! The advice I can give is to go to some of the child's appointments with your partner and ask questions. Also encourage your partner to ask all questions, even if they're hard to ask. Knowledge really is power. I know all that COULD happen, but the face is that the what ifs can drown you and you have to focus on what's real at this moment. liver problems are common, but they don't mean the end of the world, or end stage CF either. There are lots of kids who take meds to control liver enzymes and they do very well! It's really hard to balance being hopeful and not letting the darkness take over. Maybe have 10 mins a day where you amd your partner can have fearful time, but then when that time is up, its time to return to normal. I've heard of people doing this and it seems to help. It's like a mini therapy session where all your fears and anxieties get released for the day.
 
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