I'm so scared

C

CFHockeyMom

New member
Not that it matters but the median age is 38 not the average. The median means that half the people die before 38 and half die after. It's a statistical thing.

I think most parents new to CF have a tendancy to dwell on life expectancy. For the first year of Sean's life, it's all I thought about when I looked at him. Every day gets a little easier. Sure, there are days when I'm reminded just how brutal this disease is but for the most part we stay pretty positive.

Focus on being compliant with treatments because that's really all you can control. The rest is in God's hands.
 
C

CFHockeyMom

New member
Not that it matters but the median age is 38 not the average. The median means that half the people die before 38 and half die after. It's a statistical thing.

I think most parents new to CF have a tendancy to dwell on life expectancy. For the first year of Sean's life, it's all I thought about when I looked at him. Every day gets a little easier. Sure, there are days when I'm reminded just how brutal this disease is but for the most part we stay pretty positive.

Focus on being compliant with treatments because that's really all you can control. The rest is in God's hands.
 
C

CFHockeyMom

New member
Not that it matters but the median age is 38 not the average. The median means that half the people die before 38 and half die after. It's a statistical thing.

I think most parents new to CF have a tendancy to dwell on life expectancy. For the first year of Sean's life, it's all I thought about when I looked at him. Every day gets a little easier. Sure, there are days when I'm reminded just how brutal this disease is but for the most part we stay pretty positive.

Focus on being compliant with treatments because that's really all you can control. The rest is in God's hands.
 
C

CFHockeyMom

New member
Not that it matters but the median age is 38 not the average. The median means that half the people die before 38 and half die after. It's a statistical thing.

I think most parents new to CF have a tendancy to dwell on life expectancy. For the first year of Sean's life, it's all I thought about when I looked at him. Every day gets a little easier. Sure, there are days when I'm reminded just how brutal this disease is but for the most part we stay pretty positive.

Focus on being compliant with treatments because that's really all you can control. The rest is in God's hands.
 
C

CFHockeyMom

New member
Not that it matters but the median age is 38 not the average. The median means that half the people die before 38 and half die after. It's a statistical thing.
<br />
<br />I think most parents new to CF have a tendancy to dwell on life expectancy. For the first year of Sean's life, it's all I thought about when I looked at him. Every day gets a little easier. Sure, there are days when I'm reminded just how brutal this disease is but for the most part we stay pretty positive.
<br />
<br />Focus on being compliant with treatments because that's really all you can control. The rest is in God's hands.
<br />
 
T

tammykrumrey

Guest
Katie,
I do understand how you can have that fear. I remember when Kayla was diagnosed with CF how incredibly sad I was. I think that I was just in shock...I knew a lot about CF at the time b/c my nephew has CF and he was about 8 years old when she was diagnosed, so the disease was not new to me at all.

Then four months later I gave birth to Hannah, and then she, too, was diagnosed with it. I was crushed and kept having terrible fears of growing old without my kids. It even made me sick to work on their scrapbooks, thinking that there was not going to be any grandchildren to pass them on to, etc...

But then I just had to get that out of my head and work on what was important, keeping them as healthy as possible. I tried to focus on the positive...they were doing well, they were happy and very much loved. They were just two little girls who loved the same things as all other little girls their age. They just had to do a little 'extra'.

There are still times that I get very sad when I hear of the struggles that little ones are enduring, such as little Garran. Or the fact that we still loose young kids to CF blows me away. I have a tough time undestanding how that still happens when the life expectancy has increased by so much over the years. It's not fair and breaks my heart. I know that it is not the 'norm' but it still hits home.

My advice is to just love your little Ellie like you do Owen, and enjoy all the great things in life your children have to offer. Take each day in stride and deal with all the challenges that come your way as they come. Stay educated on what is going on in the 'CF world' so that you can go into clinic appts. with lots of questions. Be your daughters advocate. And just have fun with her<img src="i/expressions/heart.gif" border="0">

((hugs))
 
T

tammykrumrey

Guest
Katie,
I do understand how you can have that fear. I remember when Kayla was diagnosed with CF how incredibly sad I was. I think that I was just in shock...I knew a lot about CF at the time b/c my nephew has CF and he was about 8 years old when she was diagnosed, so the disease was not new to me at all.

Then four months later I gave birth to Hannah, and then she, too, was diagnosed with it. I was crushed and kept having terrible fears of growing old without my kids. It even made me sick to work on their scrapbooks, thinking that there was not going to be any grandchildren to pass them on to, etc...

But then I just had to get that out of my head and work on what was important, keeping them as healthy as possible. I tried to focus on the positive...they were doing well, they were happy and very much loved. They were just two little girls who loved the same things as all other little girls their age. They just had to do a little 'extra'.

There are still times that I get very sad when I hear of the struggles that little ones are enduring, such as little Garran. Or the fact that we still loose young kids to CF blows me away. I have a tough time undestanding how that still happens when the life expectancy has increased by so much over the years. It's not fair and breaks my heart. I know that it is not the 'norm' but it still hits home.

My advice is to just love your little Ellie like you do Owen, and enjoy all the great things in life your children have to offer. Take each day in stride and deal with all the challenges that come your way as they come. Stay educated on what is going on in the 'CF world' so that you can go into clinic appts. with lots of questions. Be your daughters advocate. And just have fun with her<img src="i/expressions/heart.gif" border="0">

((hugs))
 
T

tammykrumrey

Guest
Katie,
I do understand how you can have that fear. I remember when Kayla was diagnosed with CF how incredibly sad I was. I think that I was just in shock...I knew a lot about CF at the time b/c my nephew has CF and he was about 8 years old when she was diagnosed, so the disease was not new to me at all.

Then four months later I gave birth to Hannah, and then she, too, was diagnosed with it. I was crushed and kept having terrible fears of growing old without my kids. It even made me sick to work on their scrapbooks, thinking that there was not going to be any grandchildren to pass them on to, etc...

But then I just had to get that out of my head and work on what was important, keeping them as healthy as possible. I tried to focus on the positive...they were doing well, they were happy and very much loved. They were just two little girls who loved the same things as all other little girls their age. They just had to do a little 'extra'.

There are still times that I get very sad when I hear of the struggles that little ones are enduring, such as little Garran. Or the fact that we still loose young kids to CF blows me away. I have a tough time undestanding how that still happens when the life expectancy has increased by so much over the years. It's not fair and breaks my heart. I know that it is not the 'norm' but it still hits home.

My advice is to just love your little Ellie like you do Owen, and enjoy all the great things in life your children have to offer. Take each day in stride and deal with all the challenges that come your way as they come. Stay educated on what is going on in the 'CF world' so that you can go into clinic appts. with lots of questions. Be your daughters advocate. And just have fun with her<img src="i/expressions/heart.gif" border="0">

((hugs))
 
T

tammykrumrey

Guest
Katie,
I do understand how you can have that fear. I remember when Kayla was diagnosed with CF how incredibly sad I was. I think that I was just in shock...I knew a lot about CF at the time b/c my nephew has CF and he was about 8 years old when she was diagnosed, so the disease was not new to me at all.

Then four months later I gave birth to Hannah, and then she, too, was diagnosed with it. I was crushed and kept having terrible fears of growing old without my kids. It even made me sick to work on their scrapbooks, thinking that there was not going to be any grandchildren to pass them on to, etc...

But then I just had to get that out of my head and work on what was important, keeping them as healthy as possible. I tried to focus on the positive...they were doing well, they were happy and very much loved. They were just two little girls who loved the same things as all other little girls their age. They just had to do a little 'extra'.

There are still times that I get very sad when I hear of the struggles that little ones are enduring, such as little Garran. Or the fact that we still loose young kids to CF blows me away. I have a tough time undestanding how that still happens when the life expectancy has increased by so much over the years. It's not fair and breaks my heart. I know that it is not the 'norm' but it still hits home.

My advice is to just love your little Ellie like you do Owen, and enjoy all the great things in life your children have to offer. Take each day in stride and deal with all the challenges that come your way as they come. Stay educated on what is going on in the 'CF world' so that you can go into clinic appts. with lots of questions. Be your daughters advocate. And just have fun with her<img src="i/expressions/heart.gif" border="0">

((hugs))
 
T

tammykrumrey

Guest
Katie,
<br />I do understand how you can have that fear. I remember when Kayla was diagnosed with CF how incredibly sad I was. I think that I was just in shock...I knew a lot about CF at the time b/c my nephew has CF and he was about 8 years old when she was diagnosed, so the disease was not new to me at all.
<br />
<br />Then four months later I gave birth to Hannah, and then she, too, was diagnosed with it. I was crushed and kept having terrible fears of growing old without my kids. It even made me sick to work on their scrapbooks, thinking that there was not going to be any grandchildren to pass them on to, etc...
<br />
<br />But then I just had to get that out of my head and work on what was important, keeping them as healthy as possible. I tried to focus on the positive...they were doing well, they were happy and very much loved. They were just two little girls who loved the same things as all other little girls their age. They just had to do a little 'extra'.
<br />
<br />There are still times that I get very sad when I hear of the struggles that little ones are enduring, such as little Garran. Or the fact that we still loose young kids to CF blows me away. I have a tough time undestanding how that still happens when the life expectancy has increased by so much over the years. It's not fair and breaks my heart. I know that it is not the 'norm' but it still hits home.
<br />
<br />My advice is to just love your little Ellie like you do Owen, and enjoy all the great things in life your children have to offer. Take each day in stride and deal with all the challenges that come your way as they come. Stay educated on what is going on in the 'CF world' so that you can go into clinic appts. with lots of questions. Be your daughters advocate. And just have fun with her<img src="i/expressions/heart.gif" border="0">
<br />
<br />((hugs))
<br />
<br />
<br />
 
S

sjzbell

New member
Katie-
I completely understand your pain. I still feel it sometimes too. I call it my reality check time. We were diaganosed at 18 mos, & he just turned 8 in June. The time has flown by & will continue to. He was just walking & getting into stuff when we found out. This past Thursday he went to his first day of 3rd grade. It's so amazing how we didn't know how we were going to do it. How he would make it & could we take care of him like he needed....we went thru a lot of guilt too. But, exactly as you say, it's in God's hands, not ours. We do our best to keep them healthy on a daily basis, & HE takes care of the rest. Please know that what you're feeling is very normal. And in time, it will lessen as you learn more. I won't lie & say that knowledge will take it all away, because it won't. But your knowledge will replace bits of that fear to help get you through the tuff times.

I also always thought that 30 was not enough. The longer we have CF, the more I learn about so many people that are over 30, 40, & up. It keeps me going! And also all of the clinical trials that are going on or finished will eventually lead to significant findings & lengthen the lifespan even more!

There's one thing you'll learn....it's not just your child w/ CF. You have it too....meaning, it's a lifestyle that you live, not just watch. And your whole family will have it. Hunter (my youngest) has a great advocate in his big brother Chase. He, personally, doesn't care if people ask him questions like "why do you have to eat so much?" or "why are you so skinny?", etc. His normal reply is, "cuz". But if someone ever tries to give him grief about it, Chase steps in & tells the whole story & stops them in their tracks! It's a beautiful thing! My guess is, once Owen is old enuf to understand the basics, he'll do the same for his little sister!

Just remember, aside from the CF, she's a normal little girl. She's still going to wear dresses, make mud pies for daddy's supper, fall down & scrape her knee, & most important, smile & light up your world! They're our angels & whether we get them for a couple of years or 40+ (I opt for the latter), they're still a GIFT & we need to treat them as such, love all over them, & give them back to the Maker when He calls for them. Until then, sad is ok. Scared is ok. Just don't stay there. Go thru it & come back to strong! Feel free to email or PM me any time you like.

2 Corinthians 12:10 -- That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
 
S

sjzbell

New member
Katie-
I completely understand your pain. I still feel it sometimes too. I call it my reality check time. We were diaganosed at 18 mos, & he just turned 8 in June. The time has flown by & will continue to. He was just walking & getting into stuff when we found out. This past Thursday he went to his first day of 3rd grade. It's so amazing how we didn't know how we were going to do it. How he would make it & could we take care of him like he needed....we went thru a lot of guilt too. But, exactly as you say, it's in God's hands, not ours. We do our best to keep them healthy on a daily basis, & HE takes care of the rest. Please know that what you're feeling is very normal. And in time, it will lessen as you learn more. I won't lie & say that knowledge will take it all away, because it won't. But your knowledge will replace bits of that fear to help get you through the tuff times.

I also always thought that 30 was not enough. The longer we have CF, the more I learn about so many people that are over 30, 40, & up. It keeps me going! And also all of the clinical trials that are going on or finished will eventually lead to significant findings & lengthen the lifespan even more!

There's one thing you'll learn....it's not just your child w/ CF. You have it too....meaning, it's a lifestyle that you live, not just watch. And your whole family will have it. Hunter (my youngest) has a great advocate in his big brother Chase. He, personally, doesn't care if people ask him questions like "why do you have to eat so much?" or "why are you so skinny?", etc. His normal reply is, "cuz". But if someone ever tries to give him grief about it, Chase steps in & tells the whole story & stops them in their tracks! It's a beautiful thing! My guess is, once Owen is old enuf to understand the basics, he'll do the same for his little sister!

Just remember, aside from the CF, she's a normal little girl. She's still going to wear dresses, make mud pies for daddy's supper, fall down & scrape her knee, & most important, smile & light up your world! They're our angels & whether we get them for a couple of years or 40+ (I opt for the latter), they're still a GIFT & we need to treat them as such, love all over them, & give them back to the Maker when He calls for them. Until then, sad is ok. Scared is ok. Just don't stay there. Go thru it & come back to strong! Feel free to email or PM me any time you like.

2 Corinthians 12:10 -- That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
 
S

sjzbell

New member
Katie-
I completely understand your pain. I still feel it sometimes too. I call it my reality check time. We were diaganosed at 18 mos, & he just turned 8 in June. The time has flown by & will continue to. He was just walking & getting into stuff when we found out. This past Thursday he went to his first day of 3rd grade. It's so amazing how we didn't know how we were going to do it. How he would make it & could we take care of him like he needed....we went thru a lot of guilt too. But, exactly as you say, it's in God's hands, not ours. We do our best to keep them healthy on a daily basis, & HE takes care of the rest. Please know that what you're feeling is very normal. And in time, it will lessen as you learn more. I won't lie & say that knowledge will take it all away, because it won't. But your knowledge will replace bits of that fear to help get you through the tuff times.

I also always thought that 30 was not enough. The longer we have CF, the more I learn about so many people that are over 30, 40, & up. It keeps me going! And also all of the clinical trials that are going on or finished will eventually lead to significant findings & lengthen the lifespan even more!

There's one thing you'll learn....it's not just your child w/ CF. You have it too....meaning, it's a lifestyle that you live, not just watch. And your whole family will have it. Hunter (my youngest) has a great advocate in his big brother Chase. He, personally, doesn't care if people ask him questions like "why do you have to eat so much?" or "why are you so skinny?", etc. His normal reply is, "cuz". But if someone ever tries to give him grief about it, Chase steps in & tells the whole story & stops them in their tracks! It's a beautiful thing! My guess is, once Owen is old enuf to understand the basics, he'll do the same for his little sister!

Just remember, aside from the CF, she's a normal little girl. She's still going to wear dresses, make mud pies for daddy's supper, fall down & scrape her knee, & most important, smile & light up your world! They're our angels & whether we get them for a couple of years or 40+ (I opt for the latter), they're still a GIFT & we need to treat them as such, love all over them, & give them back to the Maker when He calls for them. Until then, sad is ok. Scared is ok. Just don't stay there. Go thru it & come back to strong! Feel free to email or PM me any time you like.

2 Corinthians 12:10 -- That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
 
S

sjzbell

New member
Katie-
I completely understand your pain. I still feel it sometimes too. I call it my reality check time. We were diaganosed at 18 mos, & he just turned 8 in June. The time has flown by & will continue to. He was just walking & getting into stuff when we found out. This past Thursday he went to his first day of 3rd grade. It's so amazing how we didn't know how we were going to do it. How he would make it & could we take care of him like he needed....we went thru a lot of guilt too. But, exactly as you say, it's in God's hands, not ours. We do our best to keep them healthy on a daily basis, & HE takes care of the rest. Please know that what you're feeling is very normal. And in time, it will lessen as you learn more. I won't lie & say that knowledge will take it all away, because it won't. But your knowledge will replace bits of that fear to help get you through the tuff times.

I also always thought that 30 was not enough. The longer we have CF, the more I learn about so many people that are over 30, 40, & up. It keeps me going! And also all of the clinical trials that are going on or finished will eventually lead to significant findings & lengthen the lifespan even more!

There's one thing you'll learn....it's not just your child w/ CF. You have it too....meaning, it's a lifestyle that you live, not just watch. And your whole family will have it. Hunter (my youngest) has a great advocate in his big brother Chase. He, personally, doesn't care if people ask him questions like "why do you have to eat so much?" or "why are you so skinny?", etc. His normal reply is, "cuz". But if someone ever tries to give him grief about it, Chase steps in & tells the whole story & stops them in their tracks! It's a beautiful thing! My guess is, once Owen is old enuf to understand the basics, he'll do the same for his little sister!

Just remember, aside from the CF, she's a normal little girl. She's still going to wear dresses, make mud pies for daddy's supper, fall down & scrape her knee, & most important, smile & light up your world! They're our angels & whether we get them for a couple of years or 40+ (I opt for the latter), they're still a GIFT & we need to treat them as such, love all over them, & give them back to the Maker when He calls for them. Until then, sad is ok. Scared is ok. Just don't stay there. Go thru it & come back to strong! Feel free to email or PM me any time you like.

2 Corinthians 12:10 -- That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
 
S

sjzbell

New member
Katie-
<br />I completely understand your pain. I still feel it sometimes too. I call it my reality check time. We were diaganosed at 18 mos, & he just turned 8 in June. The time has flown by & will continue to. He was just walking & getting into stuff when we found out. This past Thursday he went to his first day of 3rd grade. It's so amazing how we didn't know how we were going to do it. How he would make it & could we take care of him like he needed....we went thru a lot of guilt too. But, exactly as you say, it's in God's hands, not ours. We do our best to keep them healthy on a daily basis, & HE takes care of the rest. Please know that what you're feeling is very normal. And in time, it will lessen as you learn more. I won't lie & say that knowledge will take it all away, because it won't. But your knowledge will replace bits of that fear to help get you through the tuff times.
<br />
<br />I also always thought that 30 was not enough. The longer we have CF, the more I learn about so many people that are over 30, 40, & up. It keeps me going! And also all of the clinical trials that are going on or finished will eventually lead to significant findings & lengthen the lifespan even more!
<br />
<br />There's one thing you'll learn....it's not just your child w/ CF. You have it too....meaning, it's a lifestyle that you live, not just watch. And your whole family will have it. Hunter (my youngest) has a great advocate in his big brother Chase. He, personally, doesn't care if people ask him questions like "why do you have to eat so much?" or "why are you so skinny?", etc. His normal reply is, "cuz". But if someone ever tries to give him grief about it, Chase steps in & tells the whole story & stops them in their tracks! It's a beautiful thing! My guess is, once Owen is old enuf to understand the basics, he'll do the same for his little sister!
<br />
<br />Just remember, aside from the CF, she's a normal little girl. She's still going to wear dresses, make mud pies for daddy's supper, fall down & scrape her knee, & most important, smile & light up your world! They're our angels & whether we get them for a couple of years or 40+ (I opt for the latter), they're still a GIFT & we need to treat them as such, love all over them, & give them back to the Maker when He calls for them. Until then, sad is ok. Scared is ok. Just don't stay there. Go thru it & come back to strong! Feel free to email or PM me any time you like.
<br />
<br />2 Corinthians 12:10 -- That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
<br />
 
L

luv2run

New member
Hi-

I was told that I would die at 21 (seemed to be the magic number, I guess???) I am a healthy 29 year old now and have never been hospitalized (for cf.) I am kinda a klutz (sp?), so I've been hospitalized for other injuries. My pft are well over 100%, and I am a marathon runner. I have my bachelor's degree, even though I hate to learn. So, I did the whole crazy college thing. I currently stay home with my 3 year old son, because I want to (and I have a great husband who is cool with that.) I have a great life-I have been blessed. There are no guarantees (in life) and nothing is perfect. I'm sure your daughter will be just fine though!
 
L

luv2run

New member
Hi-

I was told that I would die at 21 (seemed to be the magic number, I guess???) I am a healthy 29 year old now and have never been hospitalized (for cf.) I am kinda a klutz (sp?), so I've been hospitalized for other injuries. My pft are well over 100%, and I am a marathon runner. I have my bachelor's degree, even though I hate to learn. So, I did the whole crazy college thing. I currently stay home with my 3 year old son, because I want to (and I have a great husband who is cool with that.) I have a great life-I have been blessed. There are no guarantees (in life) and nothing is perfect. I'm sure your daughter will be just fine though!
 
L

luv2run

New member
Hi-

I was told that I would die at 21 (seemed to be the magic number, I guess???) I am a healthy 29 year old now and have never been hospitalized (for cf.) I am kinda a klutz (sp?), so I've been hospitalized for other injuries. My pft are well over 100%, and I am a marathon runner. I have my bachelor's degree, even though I hate to learn. So, I did the whole crazy college thing. I currently stay home with my 3 year old son, because I want to (and I have a great husband who is cool with that.) I have a great life-I have been blessed. There are no guarantees (in life) and nothing is perfect. I'm sure your daughter will be just fine though!
 
L

luv2run

New member
Hi-

I was told that I would die at 21 (seemed to be the magic number, I guess???) I am a healthy 29 year old now and have never been hospitalized (for cf.) I am kinda a klutz (sp?), so I've been hospitalized for other injuries. My pft are well over 100%, and I am a marathon runner. I have my bachelor's degree, even though I hate to learn. So, I did the whole crazy college thing. I currently stay home with my 3 year old son, because I want to (and I have a great husband who is cool with that.) I have a great life-I have been blessed. There are no guarantees (in life) and nothing is perfect. I'm sure your daughter will be just fine though!
 
L

luv2run

New member
Hi-
<br />
<br />I was told that I would die at 21 (seemed to be the magic number, I guess???) I am a healthy 29 year old now and have never been hospitalized (for cf.) I am kinda a klutz (sp?), so I've been hospitalized for other injuries. My pft are well over 100%, and I am a marathon runner. I have my bachelor's degree, even though I hate to learn. So, I did the whole crazy college thing. I currently stay home with my 3 year old son, because I want to (and I have a great husband who is cool with that.) I have a great life-I have been blessed. There are no guarantees (in life) and nothing is perfect. I'm sure your daughter will be just fine though!
 
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