Where to start...?

folione

New member
I'll cross a finger that it's not CF but that the Drs. do figure out what's causing the troubles. CF sucks, but being sick and not knowing why someone is suffering and being helpless to make them feel better is alot worse. There's no denying that my spouse and I sometimes feel pretty low that our son has CF - but most of the time we don't think about that and are happy that his diagnosis means we can give him what he needs to be healthy.
 

blopunky

New member
Hey there! I myself have been on this "journey" for a little over 6 years now and I can tell you that I was floored when we found out. I have 3 other children no cf and I know what it is to try and stay together in front of them. Not to mention trying not to let your child with cf think something is "wrong" with them. That is a very fine line to walk. But like others have said, read as much as you are able to. If it takes stopping and just letting a little sink in at a time, then do what you can. I don't think there is a "right" way to handle this, you just do what you can. I don't want to sound like a nut or anything, but I have this small room with a tiny door in a part of my mind that I have to put all the worries and fear and frustration. If I didn't I don't think I could function some days. I have times that it still gets to me to the point where I HAVE to let it out. I wait until I can just cry it out and ask the question-WHY DOES HE HAVE TO HAVE THIS? I get so mad sometimes that he has to deal with all the things he has to deal with. And then he will do something goofy and I realize that this is HIS reality and he's not thinking about the tomorrows, he's all about today. So I have to just go with it and try to make each day the best I can for him. Honestly, to think of what could be takes away from what can be and that wastes precious time. Do you ever have one of those moments where you say something and you realize that you should follow your own advice? Is that called an epiphany??? Wow-I think I'll try and take my own advice!!
blopunky's mom
 

blopunky

New member
Hey there! I myself have been on this "journey" for a little over 6 years now and I can tell you that I was floored when we found out. I have 3 other children no cf and I know what it is to try and stay together in front of them. Not to mention trying not to let your child with cf think something is "wrong" with them. That is a very fine line to walk. But like others have said, read as much as you are able to. If it takes stopping and just letting a little sink in at a time, then do what you can. I don't think there is a "right" way to handle this, you just do what you can. I don't want to sound like a nut or anything, but I have this small room with a tiny door in a part of my mind that I have to put all the worries and fear and frustration. If I didn't I don't think I could function some days. I have times that it still gets to me to the point where I HAVE to let it out. I wait until I can just cry it out and ask the question-WHY DOES HE HAVE TO HAVE THIS? I get so mad sometimes that he has to deal with all the things he has to deal with. And then he will do something goofy and I realize that this is HIS reality and he's not thinking about the tomorrows, he's all about today. So I have to just go with it and try to make each day the best I can for him. Honestly, to think of what could be takes away from what can be and that wastes precious time. Do you ever have one of those moments where you say something and you realize that you should follow your own advice? Is that called an epiphany??? Wow-I think I'll try and take my own advice!!
blopunky's mom
 

blopunky

New member
Hey there! I myself have been on this "journey" for a little over 6 years now and I can tell you that I was floored when we found out. I have 3 other children no cf and I know what it is to try and stay together in front of them. Not to mention trying not to let your child with cf think something is "wrong" with them. That is a very fine line to walk. But like others have said, read as much as you are able to. If it takes stopping and just letting a little sink in at a time, then do what you can. I don't think there is a "right" way to handle this, you just do what you can. I don't want to sound like a nut or anything, but I have this small room with a tiny door in a part of my mind that I have to put all the worries and fear and frustration. If I didn't I don't think I could function some days. I have times that it still gets to me to the point where I HAVE to let it out. I wait until I can just cry it out and ask the question-WHY DOES HE HAVE TO HAVE THIS? I get so mad sometimes that he has to deal with all the things he has to deal with. And then he will do something goofy and I realize that this is HIS reality and he's not thinking about the tomorrows, he's all about today. So I have to just go with it and try to make each day the best I can for him. Honestly, to think of what could be takes away from what can be and that wastes precious time. Do you ever have one of those moments where you say something and you realize that you should follow your own advice? Is that called an epiphany??? Wow-I think I'll try and take my own advice!!
blopunky's mom
 

mom4holly

New member
I am in fear that I am on a similiar path. I have a 4 year old which my doctor is convinced has CF for several reasons and I am so totally scared about that but I Have learned so much from this site and the internet but I agree you do have to know when to stop!!! It is very hard to keep the crying away from the children even though I do agree, I dont want my 4 year old seeing my emotional distress.
 

mom4holly

New member
I am in fear that I am on a similiar path. I have a 4 year old which my doctor is convinced has CF for several reasons and I am so totally scared about that but I Have learned so much from this site and the internet but I agree you do have to know when to stop!!! It is very hard to keep the crying away from the children even though I do agree, I dont want my 4 year old seeing my emotional distress.
 

mom4holly

New member
I am in fear that I am on a similiar path. I have a 4 year old which my doctor is convinced has CF for several reasons and I am so totally scared about that but I Have learned so much from this site and the internet but I agree you do have to know when to stop!!! It is very hard to keep the crying away from the children even though I do agree, I dont want my 4 year old seeing my emotional distress.
 

caymancf

New member
I can totaly understand your fear and pain. My first born son was diagnosed at the age of six. It took me 4 years of fighting with doctors and my own family to finally get him to Miami Childrens where he was diagnosed. He was always little for his age and the only real problem that he had was almost out of control bowl movements and a constant hunger. My husband is not very tall and so everyone kept telling me that my son would just be little like his dad. During this time I had two more little boys and they had none of the symptoms that my first son had. When I told our doctor that they were even growing differently, she told me to never compare one child against the other! It wasnt until he was 5 that she finally agreed with me that something wasnt right. From the age of 4 until he turned 5, he had not grown 1 cm or gained 1 ounce!! I was terrified and only remember praying that he didnt have to have surgery! Now of course, I'd take surgery in a heartbeat over cf. Its not easy. Thinking of tomorrow can still, 4 yrs later, bring me to tears. I still have days when I feel like my son is being punished for something I did. One thing that I have found out on this journey is that living for today is vital. My children are the centre of my life. My husband and I try very hard to make every day count for all of our children. Believe in yourself and know that you are never alone. I have also taught myself to believe that only the very strongest and best of parents are given the huge task of raising such special children as ours! If you have to cry, cry! Its not such a terrible thing for our children to see. Mummy and daddy get hurt feelings too.
On an up note, my son is 10, well adjusted and can even drive me crazy! His growth and weight gain continues to be our main concern.
Good luck to all of you and God Bless you all!
Tiffany, mother to Luca 10-cf, Matteo 7-carrier, Nicholas 6-carrier, Maddalena 15months-carrier
 

caymancf

New member
I can totaly understand your fear and pain. My first born son was diagnosed at the age of six. It took me 4 years of fighting with doctors and my own family to finally get him to Miami Childrens where he was diagnosed. He was always little for his age and the only real problem that he had was almost out of control bowl movements and a constant hunger. My husband is not very tall and so everyone kept telling me that my son would just be little like his dad. During this time I had two more little boys and they had none of the symptoms that my first son had. When I told our doctor that they were even growing differently, she told me to never compare one child against the other! It wasnt until he was 5 that she finally agreed with me that something wasnt right. From the age of 4 until he turned 5, he had not grown 1 cm or gained 1 ounce!! I was terrified and only remember praying that he didnt have to have surgery! Now of course, I'd take surgery in a heartbeat over cf. Its not easy. Thinking of tomorrow can still, 4 yrs later, bring me to tears. I still have days when I feel like my son is being punished for something I did. One thing that I have found out on this journey is that living for today is vital. My children are the centre of my life. My husband and I try very hard to make every day count for all of our children. Believe in yourself and know that you are never alone. I have also taught myself to believe that only the very strongest and best of parents are given the huge task of raising such special children as ours! If you have to cry, cry! Its not such a terrible thing for our children to see. Mummy and daddy get hurt feelings too.
On an up note, my son is 10, well adjusted and can even drive me crazy! His growth and weight gain continues to be our main concern.
Good luck to all of you and God Bless you all!
Tiffany, mother to Luca 10-cf, Matteo 7-carrier, Nicholas 6-carrier, Maddalena 15months-carrier
 

caymancf

New member
I can totaly understand your fear and pain. My first born son was diagnosed at the age of six. It took me 4 years of fighting with doctors and my own family to finally get him to Miami Childrens where he was diagnosed. He was always little for his age and the only real problem that he had was almost out of control bowl movements and a constant hunger. My husband is not very tall and so everyone kept telling me that my son would just be little like his dad. During this time I had two more little boys and they had none of the symptoms that my first son had. When I told our doctor that they were even growing differently, she told me to never compare one child against the other! It wasnt until he was 5 that she finally agreed with me that something wasnt right. From the age of 4 until he turned 5, he had not grown 1 cm or gained 1 ounce!! I was terrified and only remember praying that he didnt have to have surgery! Now of course, I'd take surgery in a heartbeat over cf. Its not easy. Thinking of tomorrow can still, 4 yrs later, bring me to tears. I still have days when I feel like my son is being punished for something I did. One thing that I have found out on this journey is that living for today is vital. My children are the centre of my life. My husband and I try very hard to make every day count for all of our children. Believe in yourself and know that you are never alone. I have also taught myself to believe that only the very strongest and best of parents are given the huge task of raising such special children as ours! If you have to cry, cry! Its not such a terrible thing for our children to see. Mummy and daddy get hurt feelings too.
On an up note, my son is 10, well adjusted and can even drive me crazy! His growth and weight gain continues to be our main concern.
Good luck to all of you and God Bless you all!
Tiffany, mother to Luca 10-cf, Matteo 7-carrier, Nicholas 6-carrier, Maddalena 15months-carrier
 

sweetwhite30

New member
I will have to say not knowing is worse then knowing itself.I had a very hard time with my sweet isaiah whom is now 4.It was hard and still is at times very hard to not cry.Kids know when something is wrong they pick up on it .It is very hard when you hear the doctor say your child has c.f but in another way it is like well finally we have a dx and now we can focus on the child getting better and treated for it.I think crying is ok kids need to see mommy is human and has feelings..This in turn will help your child understand even mommys cry too...We can not always be strong .I have learned that for sure..it takes time for all things and in time you will have more good days then bad ones.....
 

sweetwhite30

New member
I will have to say not knowing is worse then knowing itself.I had a very hard time with my sweet isaiah whom is now 4.It was hard and still is at times very hard to not cry.Kids know when something is wrong they pick up on it .It is very hard when you hear the doctor say your child has c.f but in another way it is like well finally we have a dx and now we can focus on the child getting better and treated for it.I think crying is ok kids need to see mommy is human and has feelings..This in turn will help your child understand even mommys cry too...We can not always be strong .I have learned that for sure..it takes time for all things and in time you will have more good days then bad ones.....
 

sweetwhite30

New member
I will have to say not knowing is worse then knowing itself.I had a very hard time with my sweet isaiah whom is now 4.It was hard and still is at times very hard to not cry.Kids know when something is wrong they pick up on it .It is very hard when you hear the doctor say your child has c.f but in another way it is like well finally we have a dx and now we can focus on the child getting better and treated for it.I think crying is ok kids need to see mommy is human and has feelings..This in turn will help your child understand even mommys cry too...We can not always be strong .I have learned that for sure..it takes time for all things and in time you will have more good days then bad ones.....
 

sullihs

New member
I am so sorry that you are going through this. It brings tears to my eyes. My almost 5 year old son was diagnosed one year ago today. It has been a tough year, but we made it through. My son had shown slow (almost non-existant) growth for one year although he had started growing again at a normal rate for the two years prior to his diagnosis. I was so concerned because he still was only between the 3rd and 5th percentile for height. He was hungry all the time and he was still pooping 4 times a day and he was about to turn 4. His doctor was sure it was Celiac , but tested him for CF just to rule it out. He told me there was no way he had it, the nurse that did the sweat test said there was no way either...but they were both wrong. After two positive sweat tests, his genetics tests showed he was a double delta 508. The point that I am getting to is that although it was a terrible diagnosis, at least it was a diagnosis and we were able to start treatment for him. In the last year he has grown 4 inches (he is at the 40th percentile) and has gained 10 pounds (he is at the 70th percentile). I still cry a lot. A good cry in the shower in the morning is a good way to let the pain out. I don't know if the grief I feel will ever lessen, but I know that I will never take a moment of either of my children's lives for granted. I am thankful for every day that he does well.
I will be praying that the test comes back negative and also that you are able to find out what is wrong with your child.
Our CF center has a support group that meets every other month. Although it is a few hour drive to go, it is well worth it. They also have couselors that you can talk to. I would check with your center if you get the diagnosis to see what services they have available.
 

sullihs

New member
I am so sorry that you are going through this. It brings tears to my eyes. My almost 5 year old son was diagnosed one year ago today. It has been a tough year, but we made it through. My son had shown slow (almost non-existant) growth for one year although he had started growing again at a normal rate for the two years prior to his diagnosis. I was so concerned because he still was only between the 3rd and 5th percentile for height. He was hungry all the time and he was still pooping 4 times a day and he was about to turn 4. His doctor was sure it was Celiac , but tested him for CF just to rule it out. He told me there was no way he had it, the nurse that did the sweat test said there was no way either...but they were both wrong. After two positive sweat tests, his genetics tests showed he was a double delta 508. The point that I am getting to is that although it was a terrible diagnosis, at least it was a diagnosis and we were able to start treatment for him. In the last year he has grown 4 inches (he is at the 40th percentile) and has gained 10 pounds (he is at the 70th percentile). I still cry a lot. A good cry in the shower in the morning is a good way to let the pain out. I don't know if the grief I feel will ever lessen, but I know that I will never take a moment of either of my children's lives for granted. I am thankful for every day that he does well.
I will be praying that the test comes back negative and also that you are able to find out what is wrong with your child.
Our CF center has a support group that meets every other month. Although it is a few hour drive to go, it is well worth it. They also have couselors that you can talk to. I would check with your center if you get the diagnosis to see what services they have available.
 

sullihs

New member
I am so sorry that you are going through this. It brings tears to my eyes. My almost 5 year old son was diagnosed one year ago today. It has been a tough year, but we made it through. My son had shown slow (almost non-existant) growth for one year although he had started growing again at a normal rate for the two years prior to his diagnosis. I was so concerned because he still was only between the 3rd and 5th percentile for height. He was hungry all the time and he was still pooping 4 times a day and he was about to turn 4. His doctor was sure it was Celiac , but tested him for CF just to rule it out. He told me there was no way he had it, the nurse that did the sweat test said there was no way either...but they were both wrong. After two positive sweat tests, his genetics tests showed he was a double delta 508. The point that I am getting to is that although it was a terrible diagnosis, at least it was a diagnosis and we were able to start treatment for him. In the last year he has grown 4 inches (he is at the 40th percentile) and has gained 10 pounds (he is at the 70th percentile). I still cry a lot. A good cry in the shower in the morning is a good way to let the pain out. I don't know if the grief I feel will ever lessen, but I know that I will never take a moment of either of my children's lives for granted. I am thankful for every day that he does well.
I will be praying that the test comes back negative and also that you are able to find out what is wrong with your child.
Our CF center has a support group that meets every other month. Although it is a few hour drive to go, it is well worth it. They also have couselors that you can talk to. I would check with your center if you get the diagnosis to see what services they have available.
 
I

isaacsmom

Guest
Kris,

I know exactly what you are going through!!! I have two sons, Asher age 5 without CF and Isaac age 3 with Cf. Let me tell you my story. I teach kindergarten and I had a child in my class with CF. My best friend's son, Dane, was diagnosed with CF at 6 months old. I really felt that God was trying to prepare me with dealing with a child with special needs. I found out that I was pregnant during the same year as Dane was diagnosed and I had Nathan in my class. I was scared to death to get my ultrasound. When Isaac was born, I knew! Call it mother's intuition. He cried all of the time. He had several dirty diapers everyday. He was salty. I would give him 3 baths a day to try to take the saltiness away! I did not want to digest that my child had CF. I finally broke down to Isaac's doctor when he was 10 weeks old asking for him to send us for a sweat test. He assured me that Isaac was fine and Cf was just so much of a part of my life that I was imagining things. Well, the test came back and Isaac had CF. I have never felt so low in all my life. My heart hurt so bad. I began to pray and I knew that when awful things happen, and we give it to God, He will bring something good out of it. I joined the local CFF chapter. I volunteered at events and was able to talk to other moms. This helped more than anything! In my CFF group there are two sisters who both have CF. One is 24 and one is 35 and just had her first child. The fist time I saw them, I know they thought I was crazy. I could not keep my eyes off of them because seeing them as adults gave me hope for Isaac. Also, during one of my events, I met Ken Coleman, a Tennessee State representive, who is in his early fifties and has CF. What I've learned is that CF does not define Isaac. He is just as active and happy as my son Asher. I still have the same dreams for Isaac as I do for Asher. This is not a life sentence. It took a full year for me to not think of CF everytime I looked at Isaac. Now, all of his treatments are as normal to me as me brushing my teeth every morning. I still have hard times, though. Isaac was hospitalized for the first time earlier this month. Having my friend who has a son with CF is such a blessing. Cling together as a family. It's ok to cry! Your heart will feel better. There are so many things to be thankful for. There are several drugs in the pipeline that will help our babies. Find a cystic fibrosis foundation chapter to be involved in. When I raise money for CF, I really feel that I am making a difference. I will be praying for your family.

Casey
 
I

isaacsmom

Guest
Kris,

I know exactly what you are going through!!! I have two sons, Asher age 5 without CF and Isaac age 3 with Cf. Let me tell you my story. I teach kindergarten and I had a child in my class with CF. My best friend's son, Dane, was diagnosed with CF at 6 months old. I really felt that God was trying to prepare me with dealing with a child with special needs. I found out that I was pregnant during the same year as Dane was diagnosed and I had Nathan in my class. I was scared to death to get my ultrasound. When Isaac was born, I knew! Call it mother's intuition. He cried all of the time. He had several dirty diapers everyday. He was salty. I would give him 3 baths a day to try to take the saltiness away! I did not want to digest that my child had CF. I finally broke down to Isaac's doctor when he was 10 weeks old asking for him to send us for a sweat test. He assured me that Isaac was fine and Cf was just so much of a part of my life that I was imagining things. Well, the test came back and Isaac had CF. I have never felt so low in all my life. My heart hurt so bad. I began to pray and I knew that when awful things happen, and we give it to God, He will bring something good out of it. I joined the local CFF chapter. I volunteered at events and was able to talk to other moms. This helped more than anything! In my CFF group there are two sisters who both have CF. One is 24 and one is 35 and just had her first child. The fist time I saw them, I know they thought I was crazy. I could not keep my eyes off of them because seeing them as adults gave me hope for Isaac. Also, during one of my events, I met Ken Coleman, a Tennessee State representive, who is in his early fifties and has CF. What I've learned is that CF does not define Isaac. He is just as active and happy as my son Asher. I still have the same dreams for Isaac as I do for Asher. This is not a life sentence. It took a full year for me to not think of CF everytime I looked at Isaac. Now, all of his treatments are as normal to me as me brushing my teeth every morning. I still have hard times, though. Isaac was hospitalized for the first time earlier this month. Having my friend who has a son with CF is such a blessing. Cling together as a family. It's ok to cry! Your heart will feel better. There are so many things to be thankful for. There are several drugs in the pipeline that will help our babies. Find a cystic fibrosis foundation chapter to be involved in. When I raise money for CF, I really feel that I am making a difference. I will be praying for your family.

Casey
 
I

isaacsmom

Guest
Kris,

I know exactly what you are going through!!! I have two sons, Asher age 5 without CF and Isaac age 3 with Cf. Let me tell you my story. I teach kindergarten and I had a child in my class with CF. My best friend's son, Dane, was diagnosed with CF at 6 months old. I really felt that God was trying to prepare me with dealing with a child with special needs. I found out that I was pregnant during the same year as Dane was diagnosed and I had Nathan in my class. I was scared to death to get my ultrasound. When Isaac was born, I knew! Call it mother's intuition. He cried all of the time. He had several dirty diapers everyday. He was salty. I would give him 3 baths a day to try to take the saltiness away! I did not want to digest that my child had CF. I finally broke down to Isaac's doctor when he was 10 weeks old asking for him to send us for a sweat test. He assured me that Isaac was fine and Cf was just so much of a part of my life that I was imagining things. Well, the test came back and Isaac had CF. I have never felt so low in all my life. My heart hurt so bad. I began to pray and I knew that when awful things happen, and we give it to God, He will bring something good out of it. I joined the local CFF chapter. I volunteered at events and was able to talk to other moms. This helped more than anything! In my CFF group there are two sisters who both have CF. One is 24 and one is 35 and just had her first child. The fist time I saw them, I know they thought I was crazy. I could not keep my eyes off of them because seeing them as adults gave me hope for Isaac. Also, during one of my events, I met Ken Coleman, a Tennessee State representive, who is in his early fifties and has CF. What I've learned is that CF does not define Isaac. He is just as active and happy as my son Asher. I still have the same dreams for Isaac as I do for Asher. This is not a life sentence. It took a full year for me to not think of CF everytime I looked at Isaac. Now, all of his treatments are as normal to me as me brushing my teeth every morning. I still have hard times, though. Isaac was hospitalized for the first time earlier this month. Having my friend who has a son with CF is such a blessing. Cling together as a family. It's ok to cry! Your heart will feel better. There are so many things to be thankful for. There are several drugs in the pipeline that will help our babies. Find a cystic fibrosis foundation chapter to be involved in. When I raise money for CF, I really feel that I am making a difference. I will be praying for your family.

Casey
 

Twink

New member
Dear unclet - hang in there. What you will find as time goes on is that "normal" is relevant. There will be days, believe or not, that it is not the first thing you think about in the morning or the last thing you think about at night - likewise -there will days when CF is both. You will find strength and not know where it comes from - it just is there when you need it. My daughter was diagnosed at 3 months of age - she is now 11 - and there are still times I run and cry where she can not see me. She faces more in some days than I have in my entire life. In the end I figured out that I have to be strong when it counts but you are still human - and you just learn to appreciate the little things - the things mothers/parents around you will take for granted every day. Not sure if that is a bad thing or makes you a better or stronger person - but it is the reality of anyone that has a child with a disease. I hope your appointment goes well tomorrow. Take comfort in knowing others know where you are - and feel for you. Most of all - ask for help when you need it. People do want to be there for you - let them.
 
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