SCARED to death not sure where to go from here

[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.

 

[Foody]

We were diagnosed at 14 weeks after many months of suffering and me pushing for more to be done. Mother's intuition is rarely ever wrong in my experience. Good for you that you stuck to your gut. It will continue to serve you well.

So many of the moms have already said much of what is on my heart. I remember the hopelessness and despair I felt for my baby as well. I wanted to take it away with all that I am. But I can not. I wanted to be the one with CF. But I am not. I wanted to scream at the top of my lungs at the universe for doing this to him, to us. And I did. You will have days where it feels too much to bear, but it will get easier. You will see past the label of CF and into her very soul, to find your daughter is just who she is. You will grieve and that is okay.

Ben has changed our family in ways we never imagined. We are changing our lives to be more in line with our passions and loves, and much of that has to do with all we went through. He ignited our world just the way our daughter did when she was born(each in their own unique way). Preventative care and nutrition is what we CAN do for them in terms of CF...loving and exploring this world together is where we spend most of our time. I actually forget he has CF some days...something I never imagined in the beginning.

We are here for you.

Warmly,

 

[Foody]

We were diagnosed at 14 weeks after many months of suffering and me pushing for more to be done. Mother's intuition is rarely ever wrong in my experience. Good for you that you stuck to your gut. It will continue to serve you well.

So many of the moms have already said much of what is on my heart. I remember the hopelessness and despair I felt for my baby as well. I wanted to take it away with all that I am. But I can not. I wanted to be the one with CF. But I am not. I wanted to scream at the top of my lungs at the universe for doing this to him, to us. And I did. You will have days where it feels too much to bear, but it will get easier. You will see past the label of CF and into her very soul, to find your daughter is just who she is. You will grieve and that is okay.

Ben has changed our family in ways we never imagined. We are changing our lives to be more in line with our passions and loves, and much of that has to do with all we went through. He ignited our world just the way our daughter did when she was born(each in their own unique way). Preventative care and nutrition is what we CAN do for them in terms of CF...loving and exploring this world together is where we spend most of our time. I actually forget he has CF some days...something I never imagined in the beginning.

We are here for you.

Warmly,

 

[Foody]

We were diagnosed at 14 weeks after many months of suffering and me pushing for more to be done. Mother's intuition is rarely ever wrong in my experience. Good for you that you stuck to your gut. It will continue to serve you well.

So many of the moms have already said much of what is on my heart. I remember the hopelessness and despair I felt for my baby as well. I wanted to take it away with all that I am. But I can not. I wanted to be the one with CF. But I am not. I wanted to scream at the top of my lungs at the universe for doing this to him, to us. And I did. You will have days where it feels too much to bear, but it will get easier. You will see past the label of CF and into her very soul, to find your daughter is just who she is. You will grieve and that is okay.

Ben has changed our family in ways we never imagined. We are changing our lives to be more in line with our passions and loves, and much of that has to do with all we went through. He ignited our world just the way our daughter did when she was born(each in their own unique way). Preventative care and nutrition is what we CAN do for them in terms of CF...loving and exploring this world together is where we spend most of our time. I actually forget he has CF some days...something I never imagined in the beginning.

We are here for you.

Warmly,

 

[brownie]

Hi Christie

CF research has come along ways in the past years. It is very likely your child will have a very full life. Medications and treatments are always improving. This site is a great place to come for support. When reading all the posts remember that when many of us CF adults were growing up we didn't have all the benefits that the little one's do today. The Edmonton CF clinic has an amazing team of doctors and nurses. They are a huge resource of information, they are very supportive and caring. I hope all goes well for your little one, you are in my thoughts and prayers.

Charlene

 

[brownie]

Hi Christie

CF research has come along ways in the past years. It is very likely your child will have a very full life. Medications and treatments are always improving. This site is a great place to come for support. When reading all the posts remember that when many of us CF adults were growing up we didn't have all the benefits that the little one's do today. The Edmonton CF clinic has an amazing team of doctors and nurses. They are a huge resource of information, they are very supportive and caring. I hope all goes well for your little one, you are in my thoughts and prayers.

Charlene

 

[brownie]

Hi Christie

CF research has come along ways in the past years. It is very likely your child will have a very full life. Medications and treatments are always improving. This site is a great place to come for support. When reading all the posts remember that when many of us CF adults were growing up we didn't have all the benefits that the little one's do today. The Edmonton CF clinic has an amazing team of doctors and nurses. They are a huge resource of information, they are very supportive and caring. I hope all goes well for your little one, you are in my thoughts and prayers.

Charlene

 

[KellyBran]

Hi Christie,
I just wanted to welcome you to the group. I understand where you are coming from. My son Dominic was diagnosed at 18 months. (Delta F 508)He is now 5. I realize that you feel like you are never going to be happy again, that the joy has been sucked out of your life. It will get better! I remember not wanting to love him too much because I was afraid I was going to lose him. Impossible. He is the sweetest most fun loving little guy you will ever meet. My son is really healthy. He goes to pre-school and is starting kindergarten in the fall. I am even going back to work when he starts school ( I am a teacher). I promise you will feel better. It will take a while, but once you get in the groove with the treatments and appointments it will all be okay. With all of the treatments that have been developed and those that they are working on have made a huge difference in the lives of those with CF.

My best advice is to meet other CF moms. I have met several and it is so nice to have someone to talk to that understands what your life is about. My girlfriend Melissa and I co-sponsor a golf tournament every year and it is so nice to have something to focus on that is CF related and positive. She is also great if we run out of certain meds. If you want to talk feel free to e-mail me. Take care of yourself and your baby girl!
Kellybrancoli@sbcglobal.net

Hugs,
Kelly

Married to Mario, Mommy to Lucy 8 no cf and Dominic 5 w/cf.

"Every little breath that is in your lungs is a tiny little gift to me."-The White Stripes

 

[KellyBran]

Hi Christie,
I just wanted to welcome you to the group. I understand where you are coming from. My son Dominic was diagnosed at 18 months. (Delta F 508)He is now 5. I realize that you feel like you are never going to be happy again, that the joy has been sucked out of your life. It will get better! I remember not wanting to love him too much because I was afraid I was going to lose him. Impossible. He is the sweetest most fun loving little guy you will ever meet. My son is really healthy. He goes to pre-school and is starting kindergarten in the fall. I am even going back to work when he starts school ( I am a teacher). I promise you will feel better. It will take a while, but once you get in the groove with the treatments and appointments it will all be okay. With all of the treatments that have been developed and those that they are working on have made a huge difference in the lives of those with CF.

My best advice is to meet other CF moms. I have met several and it is so nice to have someone to talk to that understands what your life is about. My girlfriend Melissa and I co-sponsor a golf tournament every year and it is so nice to have something to focus on that is CF related and positive. She is also great if we run out of certain meds. If you want to talk feel free to e-mail me. Take care of yourself and your baby girl!
Kellybrancoli@sbcglobal.net

Hugs,
Kelly

Married to Mario, Mommy to Lucy 8 no cf and Dominic 5 w/cf.

"Every little breath that is in your lungs is a tiny little gift to me."-The White Stripes

 

[KellyBran]

Hi Christie,
I just wanted to welcome you to the group. I understand where you are coming from. My son Dominic was diagnosed at 18 months. (Delta F 508)He is now 5. I realize that you feel like you are never going to be happy again, that the joy has been sucked out of your life. It will get better! I remember not wanting to love him too much because I was afraid I was going to lose him. Impossible. He is the sweetest most fun loving little guy you will ever meet. My son is really healthy. He goes to pre-school and is starting kindergarten in the fall. I am even going back to work when he starts school ( I am a teacher). I promise you will feel better. It will take a while, but once you get in the groove with the treatments and appointments it will all be okay. With all of the treatments that have been developed and those that they are working on have made a huge difference in the lives of those with CF.

My best advice is to meet other CF moms. I have met several and it is so nice to have someone to talk to that understands what your life is about. My girlfriend Melissa and I co-sponsor a golf tournament every year and it is so nice to have something to focus on that is CF related and positive. She is also great if we run out of certain meds. If you want to talk feel free to e-mail me. Take care of yourself and your baby girl!
Kellybrancoli@sbcglobal.net

Hugs,
Kelly

Married to Mario, Mommy to Lucy 8 no cf and Dominic 5 w/cf.

"Every little breath that is in your lungs is a tiny little gift to me."-The White Stripes

 

[Foody]

Kelly, I remember thinking the same thing about not loving him too much, I had forgotten it until you said it...it just isn't possible though. If our children leave us tomorrow or if we leave them first, love is impossible to withhold. I love them more every second. It really will get better in time, in your own time. He had CF but CF doe not have us!

 

[Foody]

Kelly, I remember thinking the same thing about not loving him too much, I had forgotten it until you said it...it just isn't possible though. If our children leave us tomorrow or if we leave them first, love is impossible to withhold. I love them more every second. It really will get better in time, in your own time. He had CF but CF doe not have us!

 

[Foody]

Kelly, I remember thinking the same thing about not loving him too much, I had forgotten it until you said it...it just isn't possible though. If our children leave us tomorrow or if we leave them first, love is impossible to withhold. I love them more every second. It really will get better in time, in your own time. He had CF but CF doe not have us!

 

[wuffles]

Hi Christine. Just thought I'd share my story with you to give some hope.

I was born in 1984, so that makes me 22. When I was born, my parents were told I would probably make it to high school and not much further.

Now, I have a university degree. I live with my boyfriend of 5 years in a separate state to both our families. I work full-time and play competitive volleyball.

The reality check is that I take many pills a day, as well as a whole bunch of other medications. I have to spend time morning and night doing some kind of physiotherapy to clear my lungs. I have to be extra careful about hygiene, eat like a horse just to maintain my weight, I run out of energy easier than others, I can't go out to clubs or pubs that are full of cigarette smoke.

CF changes the lives of everyone involved. Some things I am grateful for - I appreciate life and how little time we have on this earth. Some things are a huge test. But you live with the cards you are dealt and make the most of everything. This community is a great resource and I am sure you will meet many inspirational individuals that will help you through the diagnosis <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[wuffles]

Hi Christine. Just thought I'd share my story with you to give some hope.

I was born in 1984, so that makes me 22. When I was born, my parents were told I would probably make it to high school and not much further.

Now, I have a university degree. I live with my boyfriend of 5 years in a separate state to both our families. I work full-time and play competitive volleyball.

The reality check is that I take many pills a day, as well as a whole bunch of other medications. I have to spend time morning and night doing some kind of physiotherapy to clear my lungs. I have to be extra careful about hygiene, eat like a horse just to maintain my weight, I run out of energy easier than others, I can't go out to clubs or pubs that are full of cigarette smoke.

CF changes the lives of everyone involved. Some things I am grateful for - I appreciate life and how little time we have on this earth. Some things are a huge test. But you live with the cards you are dealt and make the most of everything. This community is a great resource and I am sure you will meet many inspirational individuals that will help you through the diagnosis <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[wuffles]

Hi Christine. Just thought I'd share my story with you to give some hope.

I was born in 1984, so that makes me 22. When I was born, my parents were told I would probably make it to high school and not much further.

Now, I have a university degree. I live with my boyfriend of 5 years in a separate state to both our families. I work full-time and play competitive volleyball.

The reality check is that I take many pills a day, as well as a whole bunch of other medications. I have to spend time morning and night doing some kind of physiotherapy to clear my lungs. I have to be extra careful about hygiene, eat like a horse just to maintain my weight, I run out of energy easier than others, I can't go out to clubs or pubs that are full of cigarette smoke.

CF changes the lives of everyone involved. Some things I am grateful for - I appreciate life and how little time we have on this earth. Some things are a huge test. But you live with the cards you are dealt and make the most of everything. This community is a great resource and I am sure you will meet many inspirational individuals that will help you through the diagnosis <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Hughett]

Hi Christie,
We have a 7 mo. old baby boy with CF. He is such a cutie. I need to update my sig below to show how he has grown. Let me tell you, those enzymes that your child is going to have to take now before every meal are lifesavers. Our little guy lost alot of weight and was not gaining any back till we found out what was wrong. The enzymes bumped him up to the 90th percentile in weight ect..... LOL. I am still an new person to all of this myself but I have just a couple of tips for you.

First, always percuss your child. Never forget. Second, this can all be crazy at first. Take breaks and don't get overloaded with information. Sometimes there were times that I would read something or hear what one of our CF family went thru and it scared me but like I said, take it in stride. Soon you will be the one helping new visitors to this site. Just know that we all send our love to your and your family. We are here for you whenever you have a question or problem. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Hughett]

Hi Christie,
We have a 7 mo. old baby boy with CF. He is such a cutie. I need to update my sig below to show how he has grown. Let me tell you, those enzymes that your child is going to have to take now before every meal are lifesavers. Our little guy lost alot of weight and was not gaining any back till we found out what was wrong. The enzymes bumped him up to the 90th percentile in weight ect..... LOL. I am still an new person to all of this myself but I have just a couple of tips for you.

First, always percuss your child. Never forget. Second, this can all be crazy at first. Take breaks and don't get overloaded with information. Sometimes there were times that I would read something or hear what one of our CF family went thru and it scared me but like I said, take it in stride. Soon you will be the one helping new visitors to this site. Just know that we all send our love to your and your family. We are here for you whenever you have a question or problem. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Hughett]

Hi Christie,
We have a 7 mo. old baby boy with CF. He is such a cutie. I need to update my sig below to show how he has grown. Let me tell you, those enzymes that your child is going to have to take now before every meal are lifesavers. Our little guy lost alot of weight and was not gaining any back till we found out what was wrong. The enzymes bumped him up to the 90th percentile in weight ect..... LOL. I am still an new person to all of this myself but I have just a couple of tips for you.

First, always percuss your child. Never forget. Second, this can all be crazy at first. Take breaks and don't get overloaded with information. Sometimes there were times that I would read something or hear what one of our CF family went thru and it scared me but like I said, take it in stride. Soon you will be the one helping new visitors to this site. Just know that we all send our love to your and your family. We are here for you whenever you have a question or problem. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[point]

Hello -- Wanted to throw in my thoughts of encouragement.

I can not imagine what it must be like to hear about the diagnosis. I was the one being diagnosed. But, I can give you a similar reality check as a few other "older" CF patients already have given. I am 29, and in great health. I have two older brothers (34 and 31) also with CF who are doing great. I know someone else who has three bros - all in their 40's doing well. I graduated from college, work a full time 40+ hr job in a great career. I am married and plan to have a family - someday soon. I watch what I eat (making sure I get plenty of high nutritious/ high calorie foods). I exercise weekly. I take enzymes when I eat, and I do daily physiotherapy. I grew up when we had nothing but enzymes and an antibiotic if we were really sick. Times have changed and the disease outlook has changed. While I can't imagine how difficult it must be to struggle and accept a diagnosis, I wanted to add some light to the topic to tell you that many of us are living our lives and not just trying to live. Keep your chin up and Kudos to you for being proactive for your child! <img src="i/expressions/heart.gif" border="0">

Best Wishes and Much Strength. Sincerely, Christina