hi everyone...my daughter will be 2 this month, diagnosed at about 3 months and doing well at present. she has had her share of "typical colds" so far but the docs say she's never had a serious lung infection and that her pft's are normal. the reason i'm here is that i'm not dealing well with the stress of just knowing that my child has a disease that will someday end her life barring something else totally unforseen. i have told myself all the right things about living one day at atime and enjoying her and soon they'll find a cure and yet everytime she coughs or starts to get a runny nose or seems especially winded etc., this rush of panic and saddness comes over me and i worry that THIS might be the time that she doesn't get well and i'll lose her. this bothers me alot on several levels...first of all it feels totally selfish because it's about me and how could i live without her; and i start to wonder if my heart is truely opened to her and how wonderful she is as Gods' creation or am i holding part of myself back thinking that will lessen the hurt if something happens to her? as she gets older and understands more about cf, i want to be 100% available to her for support not coming to some psych ward to visit her mom. i have a wonderful husband who is very supportive emotionally and who also works very hard doing all the things that we can do to keep our daughter healthy. in so many ways i see that i'm lucky and that God is blessing us so why all these bad/sad feelings? anyone else out there feel similar to the way i do? any suggestions to help? i feel alone and scared to death
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mainly for parents but everyone welcome
- Thread starter anonymous
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I could feel the same way and did when my twins got diagnosed at a couple of days old but I dont. I feel bad for them when the get sick ect and my heart is crushed but it is the same way with all my children not just them! Do you have more children? Your heart breaks for them anyways, it just normal motherly love. You have to know that the adults on here were diagnosed 20 or so years ago. That is when treatments had just begun. Your daughter is only 2. There will be some amazing treatments coming out, maybe not a cure although I pray everyday but some things to make her feel as good as a "normal" person!! Yes, this may be the death of her but there is also a very good chance that something else will be too! No one knows there life plan and when they will die of what and when and no one wants to know! My niece passed a year ago at 4 years of age from leukemia(sp?), but the thing is when she was born they treated her just like anyone else treats their kids because they thought she was perfect and healthy and did not know any better, thank god I knew so her treatments started as early as possible to keep them as healthy as possible.........................<img src="i/expressions/sun.gif" border="0">
Hello...You are not alone believe me. Our son w/cf is 9 yrs old...he is doing great really...never been hospitalized...but it is the silent nagging deep in the way back of your brain that reminds you that tomorrow everything could change...and knowing that most probably he will need a lung transplant makes me want to go belistic! But what does all of the worrying really solve...anther concern I have is my younger son w/o cf will have to loose his brother one day. I lost a sibling and it haunts me 30yrs later still..and we chose not to have more children because of the CF thing so my younger son will be all alone...morbid thinking huh...one way that I have chosen to take control over a situation I have little control of is I have decided to make a career change and become a nurse. Atleast when or if he becomes critically ill I can take care of him....and when he goes for hospital stays hopefully I will be working at that hospital so the staff will spoil him cuz he is mine ...Believe me it is a daily struggle as a mom to keep positive and push forward hoping and praying a cure is found or they will atleast find something ANYTHING! that will halt the progression of the disease.
Until then let us pray that our kids are safe and healthy....
If you really feel it is too much to take there is always anti-depressants you know...life with a critically ill child is VERY stressful...if you feel it is too much go see your Doc and weigh out your options. There is nothing to be ashamed of my dear....Taking care of yourself is just as important as taking care of her<img src="i/expressions/face-icon-small-smile.gif" border="0">
Until then let us pray that our kids are safe and healthy....
If you really feel it is too much to take there is always anti-depressants you know...life with a critically ill child is VERY stressful...if you feel it is too much go see your Doc and weigh out your options. There is nothing to be ashamed of my dear....Taking care of yourself is just as important as taking care of her<img src="i/expressions/face-icon-small-smile.gif" border="0">
I have a 11 yr old son with CF, and also decided to make a career move to nursing. It was never an area I considered when I was younger, but spending the last 11 years around the medical field, I am really drawn to it. In addition to having a better understanding of his disease as it progress, I like the idea of something positive coming from a negative disease. I would love to work with CF kids one day.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Hello...You are not alone believe me. Our son w/cf is 9 yrs old...he is doing great really...never been hospitalized...but it is the silent nagging deep in the way back of your brain that reminds you that tomorrow everything could change...and knowing that most probably he will need a lung transplant makes me want to go belistic! But what does all of the worrying really solve...anther concern I have is my younger son w/o cf will have to loose his brother one day. I lost a sibling and it haunts me 30yrs later still..and we chose not to have more children because of the CF thing so my younger son will be all alone...morbid thinking huh...one way that I have chosen to take control over a situation I have little control of is I have decided to make a career change and become a nurse. Atleast when or if he becomes critically ill I can take care of him....and when he goes for hospital stays hopefully I will be working at that hospital so the staff will spoil him cuz he is mine ...Believe me it is a daily struggle as a mom to keep positive and push forward hoping and praying a cure is found or they will atleast find something ANYTHING! that will halt the progression of the disease.
Yes you do have morbid thinking! That is a shame!!! I hope you dont be that negative around your child.
Until then let us pray that our kids are safe and healthy....
If you really feel it is too much to take there is always anti-depressants you know...life with a critically ill child is VERY stressful...if you feel it is too much go see your Doc and weigh out your options. There is nothing to be ashamed of my dear....Taking care of yourself is just as important as taking care of her<img src="i/expressions/face-icon-small-smile.gif" border="0"><hr></blockquote>
Yes you do have morbid thinking! That is a shame!!! I hope you dont be that negative around your child.
Until then let us pray that our kids are safe and healthy....
If you really feel it is too much to take there is always anti-depressants you know...life with a critically ill child is VERY stressful...if you feel it is too much go see your Doc and weigh out your options. There is nothing to be ashamed of my dear....Taking care of yourself is just as important as taking care of her<img src="i/expressions/face-icon-small-smile.gif" border="0"><hr></blockquote>
My heart goes out to you as my boy is 22 months and it is a long hard process.
However, it does get better, I have had to try hard to remember that my son is first and foremost a normal little boy and he just happens to have CF.
Easier said than done, but I had to do it for his sake.
I find I cope fine when he is doing well, and we are just in our normal routine.
But when he gets sick or the last time he was admitted to hospital my world fell apart again because I had to confront the fact that he had CF and what that may mean for the future.
I think it takes a long time to learn how to cope with aspects of having a child with CF and I am very early into my journey as are you but one thing I really do recommend is getting out and doing things, go to the park, coffee with friends etc, this was good therapy for me and for my son and did give me back that normal that I really needed to remind me that despite everything life carries on and it just drags you with it.
I wish you the best of luck
Rebekah Mother to Matt 22mths w/cf and baby on the way no/cf
However, it does get better, I have had to try hard to remember that my son is first and foremost a normal little boy and he just happens to have CF.
Easier said than done, but I had to do it for his sake.
I find I cope fine when he is doing well, and we are just in our normal routine.
But when he gets sick or the last time he was admitted to hospital my world fell apart again because I had to confront the fact that he had CF and what that may mean for the future.
I think it takes a long time to learn how to cope with aspects of having a child with CF and I am very early into my journey as are you but one thing I really do recommend is getting out and doing things, go to the park, coffee with friends etc, this was good therapy for me and for my son and did give me back that normal that I really needed to remind me that despite everything life carries on and it just drags you with it.
I wish you the best of luck
Rebekah Mother to Matt 22mths w/cf and baby on the way no/cf
<blockquote>Quote<br><hr>Yes you do have morbid thinking! That is a shame!!! I hope you dont be that negative around your child. <hr></blockquote>
To whom it may concern,
The way that person is feeling is PERFECTLY NORMAL!!!!! When a family has 2 children and 1 has CF it is normal to worry about the one w/o CF loosing their sibling to a terrible disease. SHAME ON YOU anonymous poster to make someone who is scared about what the future holds with a terminally ill child voice his/her opinion about it.
To the original post....it is normal to have all of these fleeting thoughts....hang in there and do not listen to others negative comments.....
To whom it may concern,
The way that person is feeling is PERFECTLY NORMAL!!!!! When a family has 2 children and 1 has CF it is normal to worry about the one w/o CF loosing their sibling to a terrible disease. SHAME ON YOU anonymous poster to make someone who is scared about what the future holds with a terminally ill child voice his/her opinion about it.
To the original post....it is normal to have all of these fleeting thoughts....hang in there and do not listen to others negative comments.....
It takes a long time to learn to live with CF. Eventually, it just becomes part of your daily family life and you roll with it. Worry always comes to the surface when your child is not doing well or a hospitalization is due and THAT'S NORMAL! If you didn't worry, I would be more concerned! All of the thoughts and concerns you are having for your child with CF are normal and the concerns you are having for the sibling are also normal. I worry about Emily's sister also. She's a fairly senstive, emotional young person and already dealing with depression problems......Try to ignore the poster who told you that you were morbid. The thoughts you have are NORMAL and we all know that you would not convey these thoughts to your child. What parent would do that??
I was up late last night reading messages here and simply broke down. My son is 2 and it hasn't been a year yet since he was diagnosed. I still have my break downs when I realize the tough road ahead of him and I realize that has to be normal, but still I cry for him and his 'healthy' sister. Sure he does pretty well now, but I know the that he gets older it will get tougher. It really hit me reading posts about just how hard it is to work full time or go to college. It seems so unfair for such an innocent life. I too must be a morbid thinker, because I want another child so that my daughter won't be alone and don't attack me because that is NOT the only reason. But I don't think I can take the risk of another CF child. To the original poster, YOU ARE NOT ALONE IN YOUR THINKING! I ache for my child every single day and just try to get through without it consuming me.
Barbara-if you have advice, so share. I respect you and Emily so much for your strength!
SB
Barbara-if you have advice, so share. I respect you and Emily so much for your strength!
SB
I think it's just that we are on the more "experienced" side of CF. Emily is 21 and was diagnosed at two days of age, so CF has been a part of our lives for a long time. When you first start out, everything is scary and overwhelming and you feel like crawling into a hole and hiding. As things go along, you develop a (I hate this word) tolerance for the world and its lack of CF knowledge, compassion and empathy. Hospital visits, meds, doctors, surgeries,etc., all become easier because it all becomes more routine. You have to develop a tougher skin and learn to speak up where your child is concerned. I used to be rather shy and soft-spoken until my children were born. Now, if you rub me the wrong way....look out. (you may see that in Emily also....lol). You are always going to be the best advocate for your child, so learn to speak up and question everything. Doctors are not always right and you need to be able to let them know that you know that! If necessary, switch doctors. (We switched pediatricians once right after Emily was born when she had Meconium Ileus and the first idiot told us "We may have waited to long to treat Emily's problem".) What a stupid thing to say to a new mother. Anyway, I am rambling. Feel free to ask questions and always question what you think might not be right or anything you don't understand. Dr. Tom Dolan told us when Emily was 2 that he always thought that "CF kids were cuter and brighter than healthy kids to make up for the CF." I like to hold that thought! Hang in there!
THANK YOU SO MUCH FOR YOUR REPLY... I ALSO HAVE 2 OTHER OLDER CHILDREN WHO DO NOT HAVE CF AND I TOO WORRY ABOUT HOW CHASTENS PROBLEMS AFFECT THEM. ESPECIALLY MY 8YO SON WHO IS EXTREMELY CLOSE TO HIS BABY SISTER. I GUESS WE'LL JUST HAVE TO DO THE BEST WE CAN IF AND WHEN THAT TIME COMES. BY THE WAY, NURSING IS A GREAT CAREER; I'VE BEEN A NURSE FOR 16 YEARS BUT WHEN IT COMES TO MY CHILDREN I'M NOT SURE THAT IT HELPS. SOMETIMES HAVING SOME KNOWLEDGE MAKES IT MORE STRESSFUL I THINK. HOWEVER, I HAVE TO SAY I'M THANKFUL FOR IT BECAUSE IT IS WHAT HELPED ME RECOGNIZE THAT SOMETHING WAS NOT RIGHT WITH MY CHILD WHEN MY PEDIATRICIAN SAID SHE WAS FINE SHORTLY AFTER HER BIRTH. THIS IS WHAT LEAD TO HER RAPID DIAGNOSIS. BELEIVE ME, I WISH I HAD BEEN WRONG THIS TIME. JUST ANOTHER WAY THAT I BELIEVE GOD WAS LOOKING OUT FOR HER RIGHT FROM THE BEGINNING. ANYWAY, THANKS AGAIN.
; Hello,
My 3 month old granddaugher was diagnosed with cf January 17, 2005. I have been on the internet daily to educate myself. Today I stumbled onto a web-site that caught my attention. The e-mail address is --- www. spiritoflo.com. It is about a book written by parents raising their daughter who has cf. It sounds very inspirational. I am going to order the book, read it and pass it on to my son and daughter-in-law. I believe it will help the whole family--maybe it will help you, also. Blessings.
My 3 month old granddaugher was diagnosed with cf January 17, 2005. I have been on the internet daily to educate myself. Today I stumbled onto a web-site that caught my attention. The e-mail address is --- www. spiritoflo.com. It is about a book written by parents raising their daughter who has cf. It sounds very inspirational. I am going to order the book, read it and pass it on to my son and daughter-in-law. I believe it will help the whole family--maybe it will help you, also. Blessings.
My son was diagnosed @18 months, that was three years ago and I still am consumed by fear and sadness. when he was diagnosed I didn't cry or seek emotional help, I focused my energy on learning his routine and treatments, I was numb and shoved the pain away. I am paying for that now. THat denial has slowly eaten away my spirit and I got more and more depressed . If I even heard CF my blood ran cold and I felt like passing out. One night I was watching this documentary on HBO about a lady that had adopted a lot of kids with special needs and illnesses. One of the boys had CF and had some serious emotional problems, as well. THe show was filmed over a period of nine or ten months and I watched this kid get sicker and sicker and he ended up dying from CF. That was the last straw! I had a serious breakdown--I started breaking, and throwing things, screaming, and sobbing uncontrollably (my husband and son weren't home, thank goodness) After a few hours I started to settle down and allowed myself to just grieve. The next day I felt pretty darn good, it was such a release. Ever since then I have been able to get through the rough days a little better than before. I know that my life will never be normal and I will always have this fear of my sons prognosis deep in my head. There is no time limit for how long it takes a parent to come to terms with their childs diagnosis. Talk to someone, get pissed, break something, scream, and cry--you will feel better, if only for a while. I know what you are going through and there is no easy way to deal with the emotions involved. You will have some really difficult days, but ride with it and let your emotions out. I am terrified and angry, but my love for my son is bigger than the pain. Hang in there and go break something.
THANK YOU... AS OF LATE, I'VE BEEN CRYING WHICH I HAVE NOT LET MYSELF DO MUCH SINCE THE BEGINNING. IT'S HELPING BUT I THINK YOU MAY BE RIGHT; MAYBE I DO NEED TO BREAK SOMETHING!!!! ANGER IS AN EMOTION THAT REALISTICALLY I KNOW IS NORMAL BUT A LITTLE DIFFICULT FOR ME BECAUSE THERE'S NOTHING OR NO ONE TO DIRECT IT AT. HENCE THE IDEA OF BREAKING SOMETHING! YOU MAY BE ON TO SOMETHING.
Yes, it is very hard to find a way to release this anger, especially when you are angry with a disease. It's easy to break a piece of machinery when it doesn't work (like in the movie Office Space, where they take a faulty fax machine into an empty field and go ballistic on it), but you can beat up a disease when the disease is in the one thing you love the most, your precious child. It is so important to release this anger, though or it will take over your life, like it took over mine for so long. Dishes are really fun, but dangerous to break!!
Kickboxing is great, punching bags are awesome, ripping up old books, the list is long. Just don't do this in front of your child, it will freak them out. When my son gets older and understands his CF a little better, I am going to encourage him to constructively let it out. I have already bought a pair of feather pillows for us to get crazy on when he is going through a rough time. I have a feeling we will both be rolling on the floor laughing when we are done, and I think it will make us feel better for a while!!
Anger is healthy and an important step in how you and your child will deal with CF.
Kickboxing is great, punching bags are awesome, ripping up old books, the list is long. Just don't do this in front of your child, it will freak them out. When my son gets older and understands his CF a little better, I am going to encourage him to constructively let it out. I have already bought a pair of feather pillows for us to get crazy on when he is going through a rough time. I have a feeling we will both be rolling on the floor laughing when we are done, and I think it will make us feel better for a while!!
Anger is healthy and an important step in how you and your child will deal with CF.
I have typed and cleared this out so many times. My 11 y/o was diagnosed the friday before Christmas and I thought the docs office could have waited the weekend to tell me. What a horrible thing they did to me especially since my husband was deployed out in this war and they knew that. I had to act like everything was fine, no family here for support, just me and the kids. Then it was a whirlwind of appointments that hasn't stopped, CF doc, bronch scope, ear, nose and throat doc, set up for adnoid removal and sinus flush, gastro doc, this week is another scope the gastro doc is going to do and all of these pediatric specialists are an hour away. In between all that is our daily, normal lives with school and homework and then sports. I look at my son and he is the same person he always has been. He is very healthy and so far everything looks wonderful, in fact CF doc said without the diagnosis he wouldn't have known so far with the tests he has done. My son started the vest this week, enzyme pills, and TOBI to keep his lungs the way they are now. The Air Force sent my husband home last week because he didn't handle this well at all. I think how each of us reacts and feels is totally on an individual basis. I had totally convinced myself the high sweat test was because he was going thru puberty which I read would throw the test off but the gene test threw that out completely for me. I stopped reading about the disease itself because it was starting to throw me in depression and now I directed myself towards the medications and the reading up on the trials for cures and how to keep my son healthy. DO NOT for one minute feel guilty about how you feel for your feelings are very valid. I now get sick to my stomache when I hear one of the kids cough and I immediately ask where the cough is coming from. My daughter has not been tested, long story but the military has denied it so now I sit and wonder if she has CF as well. She has not had the lung infections my son has had nor the allergies and she outweighs him by 10 pounds and is almost as tall as he is (she is 8) so I feel she is fine, but who knows?
Everyone keeps telling me how strong I am and how great I am handling all this and I wonder, am I? or when all the whirlwind of appointments end and I have a chance to sit and breath will I break down? I think the hardest for me was the fact that he most likely will not be able to produce children. He is the last male on both sides of the family and all he talks about is growing up and having children. I honestly had never heard of CF before all of this. Not one person on either side has ever had it that anyone can come up with so this all threw us for a huge loop. I was floored and knew it all was a mistake. Perhaps, too, it may very well be that because he is not sick at all the reality of it has not set in for my feelings to come out.
I know life goes on and we each have a choice, we can sit around and wait for death without accomplishing one thing or we can live our lives to the fullest and leave this world a happy person. That is easier said than done but I am sure that as time goes by and your child has more and more good days, those good days are going to be the best days of your lives. It will get easier and from what I have been reading and have been told the outcome looks really good for your child and mine. In the meantime I, like the rest, pray for a cure.
Everyone keeps telling me how strong I am and how great I am handling all this and I wonder, am I? or when all the whirlwind of appointments end and I have a chance to sit and breath will I break down? I think the hardest for me was the fact that he most likely will not be able to produce children. He is the last male on both sides of the family and all he talks about is growing up and having children. I honestly had never heard of CF before all of this. Not one person on either side has ever had it that anyone can come up with so this all threw us for a huge loop. I was floored and knew it all was a mistake. Perhaps, too, it may very well be that because he is not sick at all the reality of it has not set in for my feelings to come out.
I know life goes on and we each have a choice, we can sit around and wait for death without accomplishing one thing or we can live our lives to the fullest and leave this world a happy person. That is easier said than done but I am sure that as time goes by and your child has more and more good days, those good days are going to be the best days of your lives. It will get easier and from what I have been reading and have been told the outcome looks really good for your child and mine. In the meantime I, like the rest, pray for a cure.