waiting

mom2caseyafrica · Mar 9, 2010

Even before my daughter was diagnosed with CF people told me I needed to be more careful. That I needed to protect her from getting sick. I took her everywhere with me. from the day we left the hospital when she was first born. She has been to so many places and she has yet to get sick. I wasnt worried about her getting sick. Now thar she has been diagnosed with cf everything scares me. Im scared to take her out of her carseat in public places. Im scared of letting anyone I dont know get close to her, even just to look at her. I loved showing her off to the world when she was born. Now I keep her bundled up and covered. Everything scares me now. I know one day, soon, she will end up getting sick. I know she will wind up in the hospital. I know what to expect. Shouldn't that make it less scary?

mom2caseyafrica · Mar 9, 2010

Even before my daughter was diagnosed with CF people told me I needed to be more careful. That I needed to protect her from getting sick. I took her everywhere with me. from the day we left the hospital when she was first born. She has been to so many places and she has yet to get sick. I wasnt worried about her getting sick. Now thar she has been diagnosed with cf everything scares me. Im scared to take her out of her carseat in public places. Im scared of letting anyone I dont know get close to her, even just to look at her. I loved showing her off to the world when she was born. Now I keep her bundled up and covered. Everything scares me now. I know one day, soon, she will end up getting sick. I know she will wind up in the hospital. I know what to expect. Shouldn't that make it less scary?

mom2caseyafrica · Mar 9, 2010

Even before my daughter was diagnosed with CF people told me I needed to be more careful. That I needed to protect her from getting sick. I took her everywhere with me. from the day we left the hospital when she was first born. She has been to so many places and she has yet to get sick. I wasnt worried about her getting sick. Now thar she has been diagnosed with cf everything scares me. Im scared to take her out of her carseat in public places. Im scared of letting anyone I dont know get close to her, even just to look at her. I loved showing her off to the world when she was born. Now I keep her bundled up and covered. Everything scares me now. I know one day, soon, she will end up getting sick. I know she will wind up in the hospital. I know what to expect. Shouldn't that make it less scary?

mom2caseyafrica · Mar 9, 2010

Even before my daughter was diagnosed with CF people told me I needed to be more careful. That I needed to protect her from getting sick. I took her everywhere with me. from the day we left the hospital when she was first born. She has been to so many places and she has yet to get sick. I wasnt worried about her getting sick. Now thar she has been diagnosed with cf everything scares me. Im scared to take her out of her carseat in public places. Im scared of letting anyone I dont know get close to her, even just to look at her. I loved showing her off to the world when she was born. Now I keep her bundled up and covered. Everything scares me now. I know one day, soon, she will end up getting sick. I know she will wind up in the hospital. I know what to expect. Shouldn't that make it less scary?

mom2caseyafrica · Mar 9, 2010

Even before my daughter was diagnosed with CF people told me I needed to be more careful. That I needed to protect her from getting sick. I took her everywhere with me. from the day we left the hospital when she was first born. She has been to so many places and she has yet to get sick. I wasnt worried about her getting sick. Now thar she has been diagnosed with cf everything scares me. Im scared to take her out of her carseat in public places. Im scared of letting anyone I dont know get close to her, even just to look at her. I loved showing her off to the world when she was born. Now I keep her bundled up and covered. Everything scares me now. I know one day, soon, she will end up getting sick. I know she will wind up in the hospital. I know what to expect. Shouldn't that make it less scary?

Mommafirst · Mar 9, 2010

The unknown is always scary, even if you sort of know what the unknown entails -- its still new and different and completely unpredictable.

You sound a lot like I was the first year. I was a purell freak. I wanted to find a bubble to keep my daughter in. But over time, it eases up....and you realize that CF may some day rob you and your daughter of many things, but while she is healthy, it should not rob you of anything. Don't lose out on enjoying her as a baby, before you know it she won't be such a baby anymore. Before you know it she will be able to say Cystic Fibrosis and ask for airway clearance when she has a cold. That doesn't mean that your daughter will be hospitalized or very sick, its just part of growing up with CF.

Overall, my daughter is fantastically normal. Sure she has some CF symptoms and sure she has been hospitalized and that isn't fun at all. But in the big picture, you'd never know if I didn't tell you. She's active, and funny, and beautiful, and smart and busy doing lots of normal 4-year old stuff.

I try not to worry about the next shoe dropping anymore. I am prepared for the next hospital stay mentally, but I have to live life for her todays. Because I won't let CF rob her of more than it has to.

Hang in there, its a process to get there. Its not easy. The first year is really emotionally difficult, even when there is nothing but waiting going on. (((HUGS)))

Mommafirst · Mar 9, 2010

The unknown is always scary, even if you sort of know what the unknown entails -- its still new and different and completely unpredictable.

You sound a lot like I was the first year. I was a purell freak. I wanted to find a bubble to keep my daughter in. But over time, it eases up....and you realize that CF may some day rob you and your daughter of many things, but while she is healthy, it should not rob you of anything. Don't lose out on enjoying her as a baby, before you know it she won't be such a baby anymore. Before you know it she will be able to say Cystic Fibrosis and ask for airway clearance when she has a cold. That doesn't mean that your daughter will be hospitalized or very sick, its just part of growing up with CF.

Overall, my daughter is fantastically normal. Sure she has some CF symptoms and sure she has been hospitalized and that isn't fun at all. But in the big picture, you'd never know if I didn't tell you. She's active, and funny, and beautiful, and smart and busy doing lots of normal 4-year old stuff.

I try not to worry about the next shoe dropping anymore. I am prepared for the next hospital stay mentally, but I have to live life for her todays. Because I won't let CF rob her of more than it has to.

Hang in there, its a process to get there. Its not easy. The first year is really emotionally difficult, even when there is nothing but waiting going on. (((HUGS)))

Mommafirst · Mar 9, 2010

The unknown is always scary, even if you sort of know what the unknown entails -- its still new and different and completely unpredictable.

You sound a lot like I was the first year. I was a purell freak. I wanted to find a bubble to keep my daughter in. But over time, it eases up....and you realize that CF may some day rob you and your daughter of many things, but while she is healthy, it should not rob you of anything. Don't lose out on enjoying her as a baby, before you know it she won't be such a baby anymore. Before you know it she will be able to say Cystic Fibrosis and ask for airway clearance when she has a cold. That doesn't mean that your daughter will be hospitalized or very sick, its just part of growing up with CF.

Overall, my daughter is fantastically normal. Sure she has some CF symptoms and sure she has been hospitalized and that isn't fun at all. But in the big picture, you'd never know if I didn't tell you. She's active, and funny, and beautiful, and smart and busy doing lots of normal 4-year old stuff.

I try not to worry about the next shoe dropping anymore. I am prepared for the next hospital stay mentally, but I have to live life for her todays. Because I won't let CF rob her of more than it has to.

Hang in there, its a process to get there. Its not easy. The first year is really emotionally difficult, even when there is nothing but waiting going on. (((HUGS)))

Mommafirst · Mar 9, 2010

The unknown is always scary, even if you sort of know what the unknown entails -- its still new and different and completely unpredictable.

You sound a lot like I was the first year. I was a purell freak. I wanted to find a bubble to keep my daughter in. But over time, it eases up....and you realize that CF may some day rob you and your daughter of many things, but while she is healthy, it should not rob you of anything. Don't lose out on enjoying her as a baby, before you know it she won't be such a baby anymore. Before you know it she will be able to say Cystic Fibrosis and ask for airway clearance when she has a cold. That doesn't mean that your daughter will be hospitalized or very sick, its just part of growing up with CF.

Overall, my daughter is fantastically normal. Sure she has some CF symptoms and sure she has been hospitalized and that isn't fun at all. But in the big picture, you'd never know if I didn't tell you. She's active, and funny, and beautiful, and smart and busy doing lots of normal 4-year old stuff.

I try not to worry about the next shoe dropping anymore. I am prepared for the next hospital stay mentally, but I have to live life for her todays. Because I won't let CF rob her of more than it has to.

Hang in there, its a process to get there. Its not easy. The first year is really emotionally difficult, even when there is nothing but waiting going on. (((HUGS)))

Mommafirst · Mar 9, 2010

The unknown is always scary, even if you sort of know what the unknown entails -- its still new and different and completely unpredictable.
 
 You sound a lot like I was the first year. I was a purell freak. I wanted to find a bubble to keep my daughter in. But over time, it eases up....and you realize that CF may some day rob you and your daughter of many things, but while she is healthy, it should not rob you of anything. Don't lose out on enjoying her as a baby, before you know it she won't be such a baby anymore. Before you know it she will be able to say Cystic Fibrosis and ask for airway clearance when she has a cold. That doesn't mean that your daughter will be hospitalized or very sick, its just part of growing up with CF.
 
 Overall, my daughter is fantastically normal. Sure she has some CF symptoms and sure she has been hospitalized and that isn't fun at all. But in the big picture, you'd never know if I didn't tell you. She's active, and funny, and beautiful, and smart and busy doing lots of normal 4-year old stuff.
 
 I try not to worry about the next shoe dropping anymore. I am prepared for the next hospital stay mentally, but I have to live life for her todays. Because I won't let CF rob her of more than it has to.
 
 Hang in there, its a process to get there. Its not easy. The first year is really emotionally difficult, even when there is nothing but waiting going on. (((HUGS)))

izemmom · Mar 9, 2010

I read your post last evening, but didn't take the time to respond. Now, I come back and find that Heather has stolen my words!!!

Seriously, I echo 110% what she said. My Emily is 4, just like her Alyssa, and is completely normal...well, as normal as "normal" 4 year olds are. Yes, we've had a few hospitalizations, and I've been going a little nutty lately trying to figure out why the last 4 rounds of oral antibiotics aren't working, and yes, we have a feeding tube and we have to built chest PT into the everyday schedule. But life is NORMAL.

I know this isn't the case for some families out there. There are some families, on our site and others that I read in the blogosphere who have young children and who face a much harder day to day life with CF. You won't know until you're IN IT what the future will look like. That's the nature of CF.

I wait for the other shoe, too. But I've learned to make the most of LIFE while I wait. I make sure, just like Heather, that my daughter GETS TO BE A NORMAL 4 year old.

You'll get there. It will take time. We all struggled the first year or so. We're here to help however we can. Just keep moving through this time - it will be gone too soon.

izemmom · Mar 9, 2010

I read your post last evening, but didn't take the time to respond. Now, I come back and find that Heather has stolen my words!!!

Seriously, I echo 110% what she said. My Emily is 4, just like her Alyssa, and is completely normal...well, as normal as "normal" 4 year olds are. Yes, we've had a few hospitalizations, and I've been going a little nutty lately trying to figure out why the last 4 rounds of oral antibiotics aren't working, and yes, we have a feeding tube and we have to built chest PT into the everyday schedule. But life is NORMAL.

I know this isn't the case for some families out there. There are some families, on our site and others that I read in the blogosphere who have young children and who face a much harder day to day life with CF. You won't know until you're IN IT what the future will look like. That's the nature of CF.

I wait for the other shoe, too. But I've learned to make the most of LIFE while I wait. I make sure, just like Heather, that my daughter GETS TO BE A NORMAL 4 year old.

You'll get there. It will take time. We all struggled the first year or so. We're here to help however we can. Just keep moving through this time - it will be gone too soon.

izemmom · Mar 9, 2010

I read your post last evening, but didn't take the time to respond. Now, I come back and find that Heather has stolen my words!!!

Seriously, I echo 110% what she said. My Emily is 4, just like her Alyssa, and is completely normal...well, as normal as "normal" 4 year olds are. Yes, we've had a few hospitalizations, and I've been going a little nutty lately trying to figure out why the last 4 rounds of oral antibiotics aren't working, and yes, we have a feeding tube and we have to built chest PT into the everyday schedule. But life is NORMAL.

I know this isn't the case for some families out there. There are some families, on our site and others that I read in the blogosphere who have young children and who face a much harder day to day life with CF. You won't know until you're IN IT what the future will look like. That's the nature of CF.

I wait for the other shoe, too. But I've learned to make the most of LIFE while I wait. I make sure, just like Heather, that my daughter GETS TO BE A NORMAL 4 year old.

You'll get there. It will take time. We all struggled the first year or so. We're here to help however we can. Just keep moving through this time - it will be gone too soon.

izemmom · Mar 9, 2010

I read your post last evening, but didn't take the time to respond. Now, I come back and find that Heather has stolen my words!!!

Seriously, I echo 110% what she said. My Emily is 4, just like her Alyssa, and is completely normal...well, as normal as "normal" 4 year olds are. Yes, we've had a few hospitalizations, and I've been going a little nutty lately trying to figure out why the last 4 rounds of oral antibiotics aren't working, and yes, we have a feeding tube and we have to built chest PT into the everyday schedule. But life is NORMAL.

I know this isn't the case for some families out there. There are some families, on our site and others that I read in the blogosphere who have young children and who face a much harder day to day life with CF. You won't know until you're IN IT what the future will look like. That's the nature of CF.

I wait for the other shoe, too. But I've learned to make the most of LIFE while I wait. I make sure, just like Heather, that my daughter GETS TO BE A NORMAL 4 year old.

You'll get there. It will take time. We all struggled the first year or so. We're here to help however we can. Just keep moving through this time - it will be gone too soon.

izemmom · Mar 9, 2010

I read your post last evening, but didn't take the time to respond. Now, I come back and find that Heather has stolen my words!!!
 
 Seriously, I echo 110% what she said. My Emily is 4, just like her Alyssa, and is completely normal...well, as normal as "normal" 4 year olds are. Yes, we've had a few hospitalizations, and I've been going a little nutty lately trying to figure out why the last 4 rounds of oral antibiotics aren't working, and yes, we have a feeding tube and we have to built chest PT into the everyday schedule. But life is NORMAL.
 
 I know this isn't the case for some families out there. There are some families, on our site and others that I read in the blogosphere who have young children and who face a much harder day to day life with CF. You won't know until you're IN IT what the future will look like. That's the nature of CF.
 
 I wait for the other shoe, too. But I've learned to make the most of LIFE while I wait. I make sure, just like Heather, that my daughter GETS TO BE A NORMAL 4 year old.
 
 You'll get there. It will take time. We all struggled the first year or so. We're here to help however we can. Just keep moving through this time - it will be gone too soon.

Tammy15 · Mar 9, 2010

I think in the beginning its all so scary> When I first got the news my first born had CF I had no clue what it was, no family member had ben diagnosed before. The first thing he learned to do at 8 mos was pretend to stop breathing he would see me panic and start laughing. He also learned to unplug IVS. He will be 30 and he always did and still does what he feels he is capable of, snow boarding, skiing, tennis. He will be 29 this Nov. His sister in May will be 25 she is the baby, our middle child does not have CF. She was able to do whatever she could, but her personality is more non sports shopping makes her day. She is a single parent of a 4 yr old which after having the baby her health has gone down but she is still chugging along, taking her son and her oxygen cylinders to the mall!

Tammy15 · Mar 9, 2010

I think in the beginning its all so scary> When I first got the news my first born had CF I had no clue what it was, no family member had ben diagnosed before. The first thing he learned to do at 8 mos was pretend to stop breathing he would see me panic and start laughing. He also learned to unplug IVS. He will be 30 and he always did and still does what he feels he is capable of, snow boarding, skiing, tennis. He will be 29 this Nov. His sister in May will be 25 she is the baby, our middle child does not have CF. She was able to do whatever she could, but her personality is more non sports shopping makes her day. She is a single parent of a 4 yr old which after having the baby her health has gone down but she is still chugging along, taking her son and her oxygen cylinders to the mall!

Tammy15 · Mar 9, 2010

I think in the beginning its all so scary> When I first got the news my first born had CF I had no clue what it was, no family member had ben diagnosed before. The first thing he learned to do at 8 mos was pretend to stop breathing he would see me panic and start laughing. He also learned to unplug IVS. He will be 30 and he always did and still does what he feels he is capable of, snow boarding, skiing, tennis. He will be 29 this Nov. His sister in May will be 25 she is the baby, our middle child does not have CF. She was able to do whatever she could, but her personality is more non sports shopping makes her day. She is a single parent of a 4 yr old which after having the baby her health has gone down but she is still chugging along, taking her son and her oxygen cylinders to the mall!

Tammy15 · Mar 9, 2010

I think in the beginning its all so scary> When I first got the news my first born had CF I had no clue what it was, no family member had ben diagnosed before. The first thing he learned to do at 8 mos was pretend to stop breathing he would see me panic and start laughing. He also learned to unplug IVS. He will be 30 and he always did and still does what he feels he is capable of, snow boarding, skiing, tennis. He will be 29 this Nov. His sister in May will be 25 she is the baby, our middle child does not have CF. She was able to do whatever she could, but her personality is more non sports shopping makes her day. She is a single parent of a 4 yr old which after having the baby her health has gone down but she is still chugging along, taking her son and her oxygen cylinders to the mall!

Tammy15 · Mar 9, 2010

I think in the beginning its all so scary> When I first got the news my first born had CF I had no clue what it was, no family member had ben diagnosed before. The first thing he learned to do at 8 mos was pretend to stop breathing he would see me panic and start laughing. He also learned to unplug IVS. He will be 30 and he always did and still does what he feels he is capable of, snow boarding, skiing, tennis. He will be 29 this Nov. His sister in May will be 25 she is the baby, our middle child does not have CF. She was able to do whatever she could, but her personality is more non sports shopping makes her day. She is a single parent of a 4 yr old which after having the baby her health has gone down but she is still chugging along, taking her son and her oxygen cylinders to the mall!

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