How do you manage working when a child with cf goes through long bouts of illness?

[fourkidsmom]

I tell you I struggled with this for the first 5 yrs with my son and finally after numerous hospitalizations and surgeries I started staying home with him & my other daughter with issues. Now my husband is out of work and I may need to get a job to make ends meet again. I can't see him finding another job making what he was making that allowed me to stay home. It wasn't the easiest staying home-we do without alot- we live paycheck to paycheck. But it has been the best health wise for my son. I know it is soo hard to work with a cf'er that has alot of issues.

Good Luck with everything.

 

[fourkidsmom]

I tell you I struggled with this for the first 5 yrs with my son and finally after numerous hospitalizations and surgeries I started staying home with him & my other daughter with issues. Now my husband is out of work and I may need to get a job to make ends meet again. I can't see him finding another job making what he was making that allowed me to stay home. It wasn't the easiest staying home-we do without alot- we live paycheck to paycheck. But it has been the best health wise for my son. I know it is soo hard to work with a cf'er that has alot of issues.

Good Luck with everything.

 

[fourkidsmom]

I tell you I struggled with this for the first 5 yrs with my son and finally after numerous hospitalizations and surgeries I started staying home with him & my other daughter with issues. Now my husband is out of work and I may need to get a job to make ends meet again. I can't see him finding another job making what he was making that allowed me to stay home. It wasn't the easiest staying home-we do without alot- we live paycheck to paycheck. But it has been the best health wise for my son. I know it is soo hard to work with a cf'er that has alot of issues.

Good Luck with everything.

 

[fourkidsmom]

I tell you I struggled with this for the first 5 yrs with my son and finally after numerous hospitalizations and surgeries I started staying home with him & my other daughter with issues. Now my husband is out of work and I may need to get a job to make ends meet again. I can't see him finding another job making what he was making that allowed me to stay home. It wasn't the easiest staying home-we do without alot- we live paycheck to paycheck. But it has been the best health wise for my son. I know it is soo hard to work with a cf'er that has alot of issues.

Good Luck with everything.

 

[fourkidsmom]

I tell you I struggled with this for the first 5 yrs with my son and finally after numerous hospitalizations and surgeries I started staying home with him & my other daughter with issues. Now my husband is out of work and I may need to get a job to make ends meet again. I can't see him finding another job making what he was making that allowed me to stay home. It wasn't the easiest staying home-we do without alot- we live paycheck to paycheck. But it has been the best health wise for my son. I know it is soo hard to work with a cf'er that has alot of issues.
<br />
<br />Good Luck with everything.
<br />

 

[randi]

Huge Concern of sooo many! I am 26 with CF and not only did my mom experience these same issues but as an adult CFer, I too had to find a solution to live a normal, productive life.

For my mom, she didn't work when I was a toddler but began driving a school bus when I entered school (she's like 5ft 2in tall so she was so cute driving a bus). Her pay was not great but she could provide good insurance while my dad took the entreprenual route. As I got a little older, my mom went back to college while I was at school and became a teacher. She never had any sick days left at the end of any year and exhausted most of her medical leave options. Somehow she made it but was so very sleep deprived and i don't think my dad or anyone in my family understands the burden of responsibilities she took on.

When I graduated college, I entered the working world and realized how much of an example my mom set for me! She always made my care her FIRST priority and that is what I had to do to! After 1 year of struggling to be a great employee, wife, and patient, I realized God had different plans for me. I had worked a part-time at home business in college and continued it on the side while I worked and it was going amazing. I moved up the ranks in that company while working part-time, eventually left my "real" job and have been working from home for 4+ years. Having the balance of God first, FAmily second (i.e. MY HEALTH) and career third has rewarded my family with a great balance but also blessed with greater income than my previous "real" job. God has a plan for us and it's all for good! Just sometimes our plans are not his plans. Most importantly, set a good example of putting HEALTH and all that's involved a priority for your CFer. Any questions let me know...

 

[randi]

Huge Concern of sooo many! I am 26 with CF and not only did my mom experience these same issues but as an adult CFer, I too had to find a solution to live a normal, productive life.

For my mom, she didn't work when I was a toddler but began driving a school bus when I entered school (she's like 5ft 2in tall so she was so cute driving a bus). Her pay was not great but she could provide good insurance while my dad took the entreprenual route. As I got a little older, my mom went back to college while I was at school and became a teacher. She never had any sick days left at the end of any year and exhausted most of her medical leave options. Somehow she made it but was so very sleep deprived and i don't think my dad or anyone in my family understands the burden of responsibilities she took on.

When I graduated college, I entered the working world and realized how much of an example my mom set for me! She always made my care her FIRST priority and that is what I had to do to! After 1 year of struggling to be a great employee, wife, and patient, I realized God had different plans for me. I had worked a part-time at home business in college and continued it on the side while I worked and it was going amazing. I moved up the ranks in that company while working part-time, eventually left my "real" job and have been working from home for 4+ years. Having the balance of God first, FAmily second (i.e. MY HEALTH) and career third has rewarded my family with a great balance but also blessed with greater income than my previous "real" job. God has a plan for us and it's all for good! Just sometimes our plans are not his plans. Most importantly, set a good example of putting HEALTH and all that's involved a priority for your CFer. Any questions let me know...

 

[randi]

Huge Concern of sooo many! I am 26 with CF and not only did my mom experience these same issues but as an adult CFer, I too had to find a solution to live a normal, productive life.

For my mom, she didn't work when I was a toddler but began driving a school bus when I entered school (she's like 5ft 2in tall so she was so cute driving a bus). Her pay was not great but she could provide good insurance while my dad took the entreprenual route. As I got a little older, my mom went back to college while I was at school and became a teacher. She never had any sick days left at the end of any year and exhausted most of her medical leave options. Somehow she made it but was so very sleep deprived and i don't think my dad or anyone in my family understands the burden of responsibilities she took on.

When I graduated college, I entered the working world and realized how much of an example my mom set for me! She always made my care her FIRST priority and that is what I had to do to! After 1 year of struggling to be a great employee, wife, and patient, I realized God had different plans for me. I had worked a part-time at home business in college and continued it on the side while I worked and it was going amazing. I moved up the ranks in that company while working part-time, eventually left my "real" job and have been working from home for 4+ years. Having the balance of God first, FAmily second (i.e. MY HEALTH) and career third has rewarded my family with a great balance but also blessed with greater income than my previous "real" job. God has a plan for us and it's all for good! Just sometimes our plans are not his plans. Most importantly, set a good example of putting HEALTH and all that's involved a priority for your CFer. Any questions let me know...

 

[randi]

Huge Concern of sooo many! I am 26 with CF and not only did my mom experience these same issues but as an adult CFer, I too had to find a solution to live a normal, productive life.

For my mom, she didn't work when I was a toddler but began driving a school bus when I entered school (she's like 5ft 2in tall so she was so cute driving a bus). Her pay was not great but she could provide good insurance while my dad took the entreprenual route. As I got a little older, my mom went back to college while I was at school and became a teacher. She never had any sick days left at the end of any year and exhausted most of her medical leave options. Somehow she made it but was so very sleep deprived and i don't think my dad or anyone in my family understands the burden of responsibilities she took on.

When I graduated college, I entered the working world and realized how much of an example my mom set for me! She always made my care her FIRST priority and that is what I had to do to! After 1 year of struggling to be a great employee, wife, and patient, I realized God had different plans for me. I had worked a part-time at home business in college and continued it on the side while I worked and it was going amazing. I moved up the ranks in that company while working part-time, eventually left my "real" job and have been working from home for 4+ years. Having the balance of God first, FAmily second (i.e. MY HEALTH) and career third has rewarded my family with a great balance but also blessed with greater income than my previous "real" job. God has a plan for us and it's all for good! Just sometimes our plans are not his plans. Most importantly, set a good example of putting HEALTH and all that's involved a priority for your CFer. Any questions let me know...

 

[randi]

Huge Concern of sooo many! I am 26 with CF and not only did my mom experience these same issues but as an adult CFer, I too had to find a solution to live a normal, productive life.
<br />
<br />For my mom, she didn't work when I was a toddler but began driving a school bus when I entered school (she's like 5ft 2in tall so she was so cute driving a bus). Her pay was not great but she could provide good insurance while my dad took the entreprenual route. As I got a little older, my mom went back to college while I was at school and became a teacher. She never had any sick days left at the end of any year and exhausted most of her medical leave options. Somehow she made it but was so very sleep deprived and i don't think my dad or anyone in my family understands the burden of responsibilities she took on.
<br />
<br />When I graduated college, I entered the working world and realized how much of an example my mom set for me! She always made my care her FIRST priority and that is what I had to do to! After 1 year of struggling to be a great employee, wife, and patient, I realized God had different plans for me. I had worked a part-time at home business in college and continued it on the side while I worked and it was going amazing. I moved up the ranks in that company while working part-time, eventually left my "real" job and have been working from home for 4+ years. Having the balance of God first, FAmily second (i.e. MY HEALTH) and career third has rewarded my family with a great balance but also blessed with greater income than my previous "real" job. God has a plan for us and it's all for good! Just sometimes our plans are not his plans. Most importantly, set a good example of putting HEALTH and all that's involved a priority for your CFer. Any questions let me know...

 

[paulaleigh]

thank you so much all of you for your replies. I to believe having the balance of God first is the biggest thing. He will direct our paths...I need to be patient and listen. I have at this time opted to work when she is well. That is about all I can do. Other doors will open in due season, but our season now is to give great care to my daughter and be there for her. My prayers are will all of you who have struggled with the same issues, thank you so much for giving of your time in a response.

 

[paulaleigh]

thank you so much all of you for your replies. I to believe having the balance of God first is the biggest thing. He will direct our paths...I need to be patient and listen. I have at this time opted to work when she is well. That is about all I can do. Other doors will open in due season, but our season now is to give great care to my daughter and be there for her. My prayers are will all of you who have struggled with the same issues, thank you so much for giving of your time in a response.

 

[paulaleigh]

thank you so much all of you for your replies. I to believe having the balance of God first is the biggest thing. He will direct our paths...I need to be patient and listen. I have at this time opted to work when she is well. That is about all I can do. Other doors will open in due season, but our season now is to give great care to my daughter and be there for her. My prayers are will all of you who have struggled with the same issues, thank you so much for giving of your time in a response.

 

[paulaleigh]

thank you so much all of you for your replies. I to believe having the balance of God first is the biggest thing. He will direct our paths...I need to be patient and listen. I have at this time opted to work when she is well. That is about all I can do. Other doors will open in due season, but our season now is to give great care to my daughter and be there for her. My prayers are will all of you who have struggled with the same issues, thank you so much for giving of your time in a response.

 

[paulaleigh]

thank you so much all of you for your replies. I to believe having the balance of God first is the biggest thing. He will direct our paths...I need to be patient and listen. I have at this time opted to work when she is well. That is about all I can do. Other doors will open in due season, but our season now is to give great care to my daughter and be there for her. My prayers are will all of you who have struggled with the same issues, thank you so much for giving of your time in a response.

 

[Ratatosk]

When DS was born, he spent 6 weeks in the hospital. I was on maternity leave for 12 weeks, but I worried about the same thing. Figured we'd play it by ear. Fortunately, he didn't have a hospitalization until this past summer -- almost 3 weeks.

We both had adequate sick, comp and vacation time banked up. DH used comp time, I used a combination of comp and vacation. It got to the point near the end of DS' stay that we were looking at the possibility of 2 more weeks on IV abx in the hospital, so we were then going to have to take turns. DH was in the process of purchasing a new laptop to work from the hospital, I was going to head back for a few days and then tag off with him.

With dr. appointments locally, we take turns. For the ones in the city, we choose a Monday or Friday and make a long weekend out of it, though we HAVE made the trip in one day. We tend to use personal days, vacation and comp for those.

We both earn 1 1/2 days sick leave each month and are able to carry 120 days total. At the end of the year anything over 120 days, we get paid a lump sum for half the amount -- so we get a nice chunk of change and incentive to save up sick leave and use other paid time off instead.

Also, ever since a coworker got the flu and a secondary infection and was in a coma for several months several years ago, we also are allowed to donate sick leave or vacation to people who may need it. So that's another option we have if we run out.

 

[Ratatosk]

When DS was born, he spent 6 weeks in the hospital. I was on maternity leave for 12 weeks, but I worried about the same thing. Figured we'd play it by ear. Fortunately, he didn't have a hospitalization until this past summer -- almost 3 weeks.

We both had adequate sick, comp and vacation time banked up. DH used comp time, I used a combination of comp and vacation. It got to the point near the end of DS' stay that we were looking at the possibility of 2 more weeks on IV abx in the hospital, so we were then going to have to take turns. DH was in the process of purchasing a new laptop to work from the hospital, I was going to head back for a few days and then tag off with him.

With dr. appointments locally, we take turns. For the ones in the city, we choose a Monday or Friday and make a long weekend out of it, though we HAVE made the trip in one day. We tend to use personal days, vacation and comp for those.

We both earn 1 1/2 days sick leave each month and are able to carry 120 days total. At the end of the year anything over 120 days, we get paid a lump sum for half the amount -- so we get a nice chunk of change and incentive to save up sick leave and use other paid time off instead.

Also, ever since a coworker got the flu and a secondary infection and was in a coma for several months several years ago, we also are allowed to donate sick leave or vacation to people who may need it. So that's another option we have if we run out.

 

[Ratatosk]

When DS was born, he spent 6 weeks in the hospital. I was on maternity leave for 12 weeks, but I worried about the same thing. Figured we'd play it by ear. Fortunately, he didn't have a hospitalization until this past summer -- almost 3 weeks.

We both had adequate sick, comp and vacation time banked up. DH used comp time, I used a combination of comp and vacation. It got to the point near the end of DS' stay that we were looking at the possibility of 2 more weeks on IV abx in the hospital, so we were then going to have to take turns. DH was in the process of purchasing a new laptop to work from the hospital, I was going to head back for a few days and then tag off with him.

With dr. appointments locally, we take turns. For the ones in the city, we choose a Monday or Friday and make a long weekend out of it, though we HAVE made the trip in one day. We tend to use personal days, vacation and comp for those.

We both earn 1 1/2 days sick leave each month and are able to carry 120 days total. At the end of the year anything over 120 days, we get paid a lump sum for half the amount -- so we get a nice chunk of change and incentive to save up sick leave and use other paid time off instead.

Also, ever since a coworker got the flu and a secondary infection and was in a coma for several months several years ago, we also are allowed to donate sick leave or vacation to people who may need it. So that's another option we have if we run out.

 

[Ratatosk]

When DS was born, he spent 6 weeks in the hospital. I was on maternity leave for 12 weeks, but I worried about the same thing. Figured we'd play it by ear. Fortunately, he didn't have a hospitalization until this past summer -- almost 3 weeks.

We both had adequate sick, comp and vacation time banked up. DH used comp time, I used a combination of comp and vacation. It got to the point near the end of DS' stay that we were looking at the possibility of 2 more weeks on IV abx in the hospital, so we were then going to have to take turns. DH was in the process of purchasing a new laptop to work from the hospital, I was going to head back for a few days and then tag off with him.

With dr. appointments locally, we take turns. For the ones in the city, we choose a Monday or Friday and make a long weekend out of it, though we HAVE made the trip in one day. We tend to use personal days, vacation and comp for those.

We both earn 1 1/2 days sick leave each month and are able to carry 120 days total. At the end of the year anything over 120 days, we get paid a lump sum for half the amount -- so we get a nice chunk of change and incentive to save up sick leave and use other paid time off instead.

Also, ever since a coworker got the flu and a secondary infection and was in a coma for several months several years ago, we also are allowed to donate sick leave or vacation to people who may need it. So that's another option we have if we run out.

 

[Ratatosk]

When DS was born, he spent 6 weeks in the hospital. I was on maternity leave for 12 weeks, but I worried about the same thing. Figured we'd play it by ear. Fortunately, he didn't have a hospitalization until this past summer -- almost 3 weeks.
<br />
<br />We both had adequate sick, comp and vacation time banked up. DH used comp time, I used a combination of comp and vacation. It got to the point near the end of DS' stay that we were looking at the possibility of 2 more weeks on IV abx in the hospital, so we were then going to have to take turns. DH was in the process of purchasing a new laptop to work from the hospital, I was going to head back for a few days and then tag off with him.
<br />
<br />With dr. appointments locally, we take turns. For the ones in the city, we choose a Monday or Friday and make a long weekend out of it, though we HAVE made the trip in one day. We tend to use personal days, vacation and comp for those.
<br />
<br />We both earn 1 1/2 days sick leave each month and are able to carry 120 days total. At the end of the year anything over 120 days, we get paid a lump sum for half the amount -- so we get a nice chunk of change and incentive to save up sick leave and use other paid time off instead.
<br />
<br />Also, ever since a coworker got the flu and a secondary infection and was in a coma for several months several years ago, we also are allowed to donate sick leave or vacation to people who may need it. So that's another option we have if we run out.