SCARED to death not sure where to go from here

[CDBRADEN2004]

Hello to everyone:

Unfortunatley my family has joined the club. In November my first and only daughter went through a series of sweat test and sadley enough she had tested positive with both the sweat test and the gentic testing, she has 2 of the Delta F508 genes. I am struggling so much inside and am looking for someone who would share some stories with our family so we could have some hope that things will get back to "normal". I am 25 and my beautiful daughter Emily Ashley is 16 months tomorrow she was only 13 months at the time. I knew from about 3 months old that something just was not right with her health, my husband would get so mad and say "quit trying to find things wrong her" but I just knew that a baby that young isn't suppose to be sick all the time. She always seemed to have a cold but the cold would last for 2 months sometimes. She has never been admitted to the hospital and her doctor is optimistic that she will be okay but won't answer the questions I have he just always says "there are so many advancements now they are living well into there 20-40". I just would like so bad to make it all go away, I know that sounds nieve but it just hurts sooo bad everytime I look at her I can't help but start to think about how long is she going to be here? how will I live without her? Is she suffering right now? am I taking good enough care of her? I don't know anyone who has CF or anyone who has dealt with someone who has it. I have never felt so lost and helpless in my life. So if someone would please share there stories or let me know that how life is for them living with CF it would REALLY help me.

Christie Braden
Edmonton, AB

 

[CDBRADEN2004]

Hello to everyone:

Unfortunatley my family has joined the club. In November my first and only daughter went through a series of sweat test and sadley enough she had tested positive with both the sweat test and the gentic testing, she has 2 of the Delta F508 genes. I am struggling so much inside and am looking for someone who would share some stories with our family so we could have some hope that things will get back to "normal". I am 25 and my beautiful daughter Emily Ashley is 16 months tomorrow she was only 13 months at the time. I knew from about 3 months old that something just was not right with her health, my husband would get so mad and say "quit trying to find things wrong her" but I just knew that a baby that young isn't suppose to be sick all the time. She always seemed to have a cold but the cold would last for 2 months sometimes. She has never been admitted to the hospital and her doctor is optimistic that she will be okay but won't answer the questions I have he just always says "there are so many advancements now they are living well into there 20-40". I just would like so bad to make it all go away, I know that sounds nieve but it just hurts sooo bad everytime I look at her I can't help but start to think about how long is she going to be here? how will I live without her? Is she suffering right now? am I taking good enough care of her? I don't know anyone who has CF or anyone who has dealt with someone who has it. I have never felt so lost and helpless in my life. So if someone would please share there stories or let me know that how life is for them living with CF it would REALLY help me.

Christie Braden
Edmonton, AB

 

[CDBRADEN2004]

Hello to everyone:

Unfortunatley my family has joined the club. In November my first and only daughter went through a series of sweat test and sadley enough she had tested positive with both the sweat test and the gentic testing, she has 2 of the Delta F508 genes. I am struggling so much inside and am looking for someone who would share some stories with our family so we could have some hope that things will get back to "normal". I am 25 and my beautiful daughter Emily Ashley is 16 months tomorrow she was only 13 months at the time. I knew from about 3 months old that something just was not right with her health, my husband would get so mad and say "quit trying to find things wrong her" but I just knew that a baby that young isn't suppose to be sick all the time. She always seemed to have a cold but the cold would last for 2 months sometimes. She has never been admitted to the hospital and her doctor is optimistic that she will be okay but won't answer the questions I have he just always says "there are so many advancements now they are living well into there 20-40". I just would like so bad to make it all go away, I know that sounds nieve but it just hurts sooo bad everytime I look at her I can't help but start to think about how long is she going to be here? how will I live without her? Is she suffering right now? am I taking good enough care of her? I don't know anyone who has CF or anyone who has dealt with someone who has it. I have never felt so lost and helpless in my life. So if someone would please share there stories or let me know that how life is for them living with CF it would REALLY help me.

Christie Braden
Edmonton, AB

 

[PACmommy]

HI Christie,
I'm in the same boat as you. Our daughter Ainsley was diagnosed in Sept. It was more of a shock to the rest of the family than to myself. I had been saying for quite some time that I felt something wasn't right, but most people just treated me like I was being neurotic. When I told my in-laws that she was going for a sweat test, they just about had a conniption. My mother in law is a nurse, sister in law is a physiotherapist and the other sister in law is studying to be a respiratory therapist, basically, I was just the dumb mother. The last thing I wanted was a positive result, but maaannnn did I feel justified. No longer could people just pat my head and treat me like I was just being silly (can you tell I'm still a little bitter?).
Anyways I was glad to have answers, and now I could put my "game face" on and deal with an actual diagnosis. Seems much better than not knowing.
I tend not to dwell on the future, it's too unsure and that can be depressing. We can't control life, only God knows what's instore. Rather I focus on the day to day struggles, and deal with how my children are feeling today. I put faith in God that our lives are in his hands.

 

[PACmommy]

HI Christie,
I'm in the same boat as you. Our daughter Ainsley was diagnosed in Sept. It was more of a shock to the rest of the family than to myself. I had been saying for quite some time that I felt something wasn't right, but most people just treated me like I was being neurotic. When I told my in-laws that she was going for a sweat test, they just about had a conniption. My mother in law is a nurse, sister in law is a physiotherapist and the other sister in law is studying to be a respiratory therapist, basically, I was just the dumb mother. The last thing I wanted was a positive result, but maaannnn did I feel justified. No longer could people just pat my head and treat me like I was just being silly (can you tell I'm still a little bitter?).
Anyways I was glad to have answers, and now I could put my "game face" on and deal with an actual diagnosis. Seems much better than not knowing.
I tend not to dwell on the future, it's too unsure and that can be depressing. We can't control life, only God knows what's instore. Rather I focus on the day to day struggles, and deal with how my children are feeling today. I put faith in God that our lives are in his hands.

 

[PACmommy]

HI Christie,
I'm in the same boat as you. Our daughter Ainsley was diagnosed in Sept. It was more of a shock to the rest of the family than to myself. I had been saying for quite some time that I felt something wasn't right, but most people just treated me like I was being neurotic. When I told my in-laws that she was going for a sweat test, they just about had a conniption. My mother in law is a nurse, sister in law is a physiotherapist and the other sister in law is studying to be a respiratory therapist, basically, I was just the dumb mother. The last thing I wanted was a positive result, but maaannnn did I feel justified. No longer could people just pat my head and treat me like I was just being silly (can you tell I'm still a little bitter?).
Anyways I was glad to have answers, and now I could put my "game face" on and deal with an actual diagnosis. Seems much better than not knowing.
I tend not to dwell on the future, it's too unsure and that can be depressing. We can't control life, only God knows what's instore. Rather I focus on the day to day struggles, and deal with how my children are feeling today. I put faith in God that our lives are in his hands.

 

[mneville]

Christie- I am so sorry for your diagnosis and the way you are feeling right now. My son Aidan was diagnosed at 8 days old and is now almost two and a half. He is also a Double Delta. I cannot even begin to tell you how devastated we were. I was so full of sadness and CF was all I thought about. It was so hard. I can only tell you this and you will just have to believe me and all the other parents. IT WILL GET EASIER.

CF will not be the first and last thing on your mind in due time. Aidan has inspired me to become a better person, a better parent and to love the little pants off of him! He is the most spirited, happy two year old I know, who by the way is in the 95% for weight. The treatments become normal and really they are just extra treatments. He is no different than any other two year old, he just takes a few extra meds.

We took him to one of the best CF docs in the country in June. He told us that we should fully expect Aidan to become a father and grandfather if he so wishes. I totally believe him. I am not saying it is easy but nobody guranteed that life ever would be. You need to give yourself time- that is the only thing that eased the pain for me. It will get easier, I promise. You have a very special little girl who is so lucky to have you as parents!

Megan, mom to Aidan with Baby #2 on the way

 

[mneville]

Christie- I am so sorry for your diagnosis and the way you are feeling right now. My son Aidan was diagnosed at 8 days old and is now almost two and a half. He is also a Double Delta. I cannot even begin to tell you how devastated we were. I was so full of sadness and CF was all I thought about. It was so hard. I can only tell you this and you will just have to believe me and all the other parents. IT WILL GET EASIER.

CF will not be the first and last thing on your mind in due time. Aidan has inspired me to become a better person, a better parent and to love the little pants off of him! He is the most spirited, happy two year old I know, who by the way is in the 95% for weight. The treatments become normal and really they are just extra treatments. He is no different than any other two year old, he just takes a few extra meds.

We took him to one of the best CF docs in the country in June. He told us that we should fully expect Aidan to become a father and grandfather if he so wishes. I totally believe him. I am not saying it is easy but nobody guranteed that life ever would be. You need to give yourself time- that is the only thing that eased the pain for me. It will get easier, I promise. You have a very special little girl who is so lucky to have you as parents!

Megan, mom to Aidan with Baby #2 on the way

 

[mneville]

Christie- I am so sorry for your diagnosis and the way you are feeling right now. My son Aidan was diagnosed at 8 days old and is now almost two and a half. He is also a Double Delta. I cannot even begin to tell you how devastated we were. I was so full of sadness and CF was all I thought about. It was so hard. I can only tell you this and you will just have to believe me and all the other parents. IT WILL GET EASIER.

CF will not be the first and last thing on your mind in due time. Aidan has inspired me to become a better person, a better parent and to love the little pants off of him! He is the most spirited, happy two year old I know, who by the way is in the 95% for weight. The treatments become normal and really they are just extra treatments. He is no different than any other two year old, he just takes a few extra meds.

We took him to one of the best CF docs in the country in June. He told us that we should fully expect Aidan to become a father and grandfather if he so wishes. I totally believe him. I am not saying it is easy but nobody guranteed that life ever would be. You need to give yourself time- that is the only thing that eased the pain for me. It will get easier, I promise. You have a very special little girl who is so lucky to have you as parents!

Megan, mom to Aidan with Baby #2 on the way

 

[kayleesgrandma]

This is the first time I have come here, I usually cruise the other sites. It's hard to come here, 'cause it brings back memories. But it is good to know other members of "our" family. This is what Jeanne wanted when she created this site. She wants us to "support" each other. I am not much help as Kaylee hasn't had much of the CF problems--no hopitalizations except one. But I am around to offer a hand on the shoulder, or a shoulder to lean on, if needed. We all are. I didn't discover this place until I had gone through a year of hopeless feelings after Kaylee's diagnosis. There is so much information from others here, the "older" cfrs. It is not hopeless--it's hope-filled. Thanks to those that have come before us. Welcome, you are not alone.

 

[kayleesgrandma]

This is the first time I have come here, I usually cruise the other sites. It's hard to come here, 'cause it brings back memories. But it is good to know other members of "our" family. This is what Jeanne wanted when she created this site. She wants us to "support" each other. I am not much help as Kaylee hasn't had much of the CF problems--no hopitalizations except one. But I am around to offer a hand on the shoulder, or a shoulder to lean on, if needed. We all are. I didn't discover this place until I had gone through a year of hopeless feelings after Kaylee's diagnosis. There is so much information from others here, the "older" cfrs. It is not hopeless--it's hope-filled. Thanks to those that have come before us. Welcome, you are not alone.

 

[kayleesgrandma]

This is the first time I have come here, I usually cruise the other sites. It's hard to come here, 'cause it brings back memories. But it is good to know other members of "our" family. This is what Jeanne wanted when she created this site. She wants us to "support" each other. I am not much help as Kaylee hasn't had much of the CF problems--no hopitalizations except one. But I am around to offer a hand on the shoulder, or a shoulder to lean on, if needed. We all are. I didn't discover this place until I had gone through a year of hopeless feelings after Kaylee's diagnosis. There is so much information from others here, the "older" cfrs. It is not hopeless--it's hope-filled. Thanks to those that have come before us. Welcome, you are not alone.

 

[Alyssa]

I'm so sorry to hear about your daughter's diagnosis. I hope being on this site will help you get the answers to your questions and give you a place to communicate with others -- it is a great place -- I'm glad you found it.

I haven't had time to look around at the other categories, (in case you already did this) but I would suggest you post this same thing in the family section and maybe even the adult section -- you will get far far more people responding to your questions. For whatever reason, the newly diagnosed section just doesn't get much traffic. I know that a lot of people out there would be happy to share their stories, experience & words of encouragement with you. I also know there are several adults on here who have the same genes as our daughter.

I know that when we first got the diagnosis (and even now), the one thing that gives me comfort and encouragement is hearing from other adults with CF.

 

[Alyssa]

I'm so sorry to hear about your daughter's diagnosis. I hope being on this site will help you get the answers to your questions and give you a place to communicate with others -- it is a great place -- I'm glad you found it.

I haven't had time to look around at the other categories, (in case you already did this) but I would suggest you post this same thing in the family section and maybe even the adult section -- you will get far far more people responding to your questions. For whatever reason, the newly diagnosed section just doesn't get much traffic. I know that a lot of people out there would be happy to share their stories, experience & words of encouragement with you. I also know there are several adults on here who have the same genes as our daughter.

I know that when we first got the diagnosis (and even now), the one thing that gives me comfort and encouragement is hearing from other adults with CF.

 

[Alyssa]

I'm so sorry to hear about your daughter's diagnosis. I hope being on this site will help you get the answers to your questions and give you a place to communicate with others -- it is a great place -- I'm glad you found it.

I haven't had time to look around at the other categories, (in case you already did this) but I would suggest you post this same thing in the family section and maybe even the adult section -- you will get far far more people responding to your questions. For whatever reason, the newly diagnosed section just doesn't get much traffic. I know that a lot of people out there would be happy to share their stories, experience & words of encouragement with you. I also know there are several adults on here who have the same genes as our daughter.

I know that when we first got the diagnosis (and even now), the one thing that gives me comfort and encouragement is hearing from other adults with CF.

 

[Rebjane]

My daughter with CF was diagnosed before she was born. She is now four years old. A VERY important thing with CF is Preventative care. We go to a CF center every 3 months where we see a CF doc , nutritionist, nurse and other staff if necessary. I also take my daughter to a larger , CF center, with a more research tone once a year, to make sure we are up to date with what is current for CF. We did chest PT manually since she was a newborn, she now has the VEST she uses everyday healthy or sick. We do breathing treatments, she takes enzymes. It IS time-consuming. BUT it's what we have to do to keep her healthy. She goes to nursery school, ballet classes birthday parties. Maggie has best freinds who come over to play she goes over their house. My daughter is out-going and smart and truthfully sometimes a wise-ass. She has a fun life. She has been sick but we just do our best and that's all we can do. Educate yourself, love our daughter. You are entitled to feel sad and angry whatever it is you feel, but eventually let that fade and keep on living!

 

[Rebjane]

My daughter with CF was diagnosed before she was born. She is now four years old. A VERY important thing with CF is Preventative care. We go to a CF center every 3 months where we see a CF doc , nutritionist, nurse and other staff if necessary. I also take my daughter to a larger , CF center, with a more research tone once a year, to make sure we are up to date with what is current for CF. We did chest PT manually since she was a newborn, she now has the VEST she uses everyday healthy or sick. We do breathing treatments, she takes enzymes. It IS time-consuming. BUT it's what we have to do to keep her healthy. She goes to nursery school, ballet classes birthday parties. Maggie has best freinds who come over to play she goes over their house. My daughter is out-going and smart and truthfully sometimes a wise-ass. She has a fun life. She has been sick but we just do our best and that's all we can do. Educate yourself, love our daughter. You are entitled to feel sad and angry whatever it is you feel, but eventually let that fade and keep on living!

 

[Rebjane]

My daughter with CF was diagnosed before she was born. She is now four years old. A VERY important thing with CF is Preventative care. We go to a CF center every 3 months where we see a CF doc , nutritionist, nurse and other staff if necessary. I also take my daughter to a larger , CF center, with a more research tone once a year, to make sure we are up to date with what is current for CF. We did chest PT manually since she was a newborn, she now has the VEST she uses everyday healthy or sick. We do breathing treatments, she takes enzymes. It IS time-consuming. BUT it's what we have to do to keep her healthy. She goes to nursery school, ballet classes birthday parties. Maggie has best freinds who come over to play she goes over their house. My daughter is out-going and smart and truthfully sometimes a wise-ass. She has a fun life. She has been sick but we just do our best and that's all we can do. Educate yourself, love our daughter. You are entitled to feel sad and angry whatever it is you feel, but eventually let that fade and keep on living!

 

[izemmom]

Hi Christine

First, welcome. You will find in time that this is not a terrible place to be. You have found an exceptionally caring, knowledgebable and supportive group of people who know exactly what you are going through.

Secondly, I second what every previous poster has said about things getting better in time, no matter how devestating it is right now. YOu are absolutley right to be scared to death. We all were. But please have faith that life will become normal again. When I made my first post to this site 15 months ago, someone responded that "Life will never be what it was, but you will find a new normal." It was so true.

My little Emily Jayne(15 months yesterday) has cf just like your Emily Ashley. It's a beautiful name and I'm sure she is every bit as beautiful as my little girl. She has a smile that melts your heart, and you would do anything for her, right? You are her mom, you love her more than anything else in the world and she loves you, and that is what will make this better, in time.

While your doctor is right...there have been many advancements and the averaage life expectancy is now in the mid-30's...you should absolutelyl be getting answers to your questions. REAL answers. Please make sure that Emily is getting care from an accredied cf care center. If not, find one and make the drive. It is worth it. In the mean time. Post your questions here. Someone will have an answer.

I don't think there are many here who don't want to make this disease go away. For the first few months, I too wondered how I'd lie with out her. Now, seeing that she has grown and developed like any other little girl (She gives her older sister - no cf- a run for her money) I don't dwell on it anymore. YOu will get to that point, too. We all wonder if we are doing a good enough job of taking care of our kids - cf or no cf. That is part of being a parent and you'd wonder it more if you didn't have a diagnosis and she was just getting sicker and sicker.

Learn all you can, but don't think too much about the scary stuff. Research what you need to know right now...chest pt, enzymes, meds for any infections she has...and leave the other stuff (transplants, all the scary things she culd possible culture...until you are feeling stronger and more knowledgeable) Work on each new "problem" as it arises, and remember, we are here to help.

In time, you won't feel helpless. You'll just feel like Emily's mom who is doing the best she can for her daughter. I will keep you in my thoughts. You can PM me here on the site or e-mail me at gtdrax@nconnect.net if you want to talk.

I'm sorry this is so long...I get carried away when I respond to people who are just starting out on this journey. Just know you are now among friends who can help.

 

[izemmom]

Hi Christine

First, welcome. You will find in time that this is not a terrible place to be. You have found an exceptionally caring, knowledgebable and supportive group of people who know exactly what you are going through.

Secondly, I second what every previous poster has said about things getting better in time, no matter how devestating it is right now. YOu are absolutley right to be scared to death. We all were. But please have faith that life will become normal again. When I made my first post to this site 15 months ago, someone responded that "Life will never be what it was, but you will find a new normal." It was so true.

My little Emily Jayne(15 months yesterday) has cf just like your Emily Ashley. It's a beautiful name and I'm sure she is every bit as beautiful as my little girl. She has a smile that melts your heart, and you would do anything for her, right? You are her mom, you love her more than anything else in the world and she loves you, and that is what will make this better, in time.

While your doctor is right...there have been many advancements and the averaage life expectancy is now in the mid-30's...you should absolutelyl be getting answers to your questions. REAL answers. Please make sure that Emily is getting care from an accredied cf care center. If not, find one and make the drive. It is worth it. In the mean time. Post your questions here. Someone will have an answer.

I don't think there are many here who don't want to make this disease go away. For the first few months, I too wondered how I'd lie with out her. Now, seeing that she has grown and developed like any other little girl (She gives her older sister - no cf- a run for her money) I don't dwell on it anymore. YOu will get to that point, too. We all wonder if we are doing a good enough job of taking care of our kids - cf or no cf. That is part of being a parent and you'd wonder it more if you didn't have a diagnosis and she was just getting sicker and sicker.

Learn all you can, but don't think too much about the scary stuff. Research what you need to know right now...chest pt, enzymes, meds for any infections she has...and leave the other stuff (transplants, all the scary things she culd possible culture...until you are feeling stronger and more knowledgeable) Work on each new "problem" as it arises, and remember, we are here to help.

In time, you won't feel helpless. You'll just feel like Emily's mom who is doing the best she can for her daughter. I will keep you in my thoughts. You can PM me here on the site or e-mail me at gtdrax@nconnect.net if you want to talk.

I'm sorry this is so long...I get carried away when I respond to people who are just starting out on this journey. Just know you are now among friends who can help.