I feel scared ....

[lillytree]

Hi I am new here and have a four year old who has cf. My story so far is she has had pseudomodus twice once when she was four months old and then just last summer, this was our 1st admission to hospital. It was a real shock as I knew that day might come but really was never ready for it.

I want to try to let her be a free spirit but find that when I am in the supermarket or park and hear people/children coughing I panic and have to get out of that situation right then. I feel I cannot relax in this kind of enviorment.

Certain realitives have not been much support..They have kept the truth away from me like I went to there house and have stressed so many times not to put my child at risk. Once I got there one realitive had a very bad flu.

They also have put great strain on our relationship, and have fell out with me because I would not let my child mix as there baby had rsv and was poorly. Christmas is coming and I want my child selfish as it may sound well for christmas. They have turned everything around on me saying I should not stop her getting her presents for christmas day I told them to post them to me. I feel to upset to have any realtionship and my husband has seen how upset it makes me. I have been told by medical staff not to put my child at risk knowingly, and this is what I try not to do.

I understand that she will catch all the normal coughs and colds but refuse to do this knowingly.

I feel I can no longer trust them so I have now decided after years of trying to go our own way.

I am sorry to rant but here is an outlet for me.

I just feel the only people that understand are people in the same situation.

I feel much better for talking about this and just want to be around people who understand.

Thanks for listening

Lillytree

 

[lillytree]

Hi I am new here and have a four year old who has cf. My story so far is she has had pseudomodus twice once when she was four months old and then just last summer, this was our 1st admission to hospital. It was a real shock as I knew that day might come but really was never ready for it.

I want to try to let her be a free spirit but find that when I am in the supermarket or park and hear people/children coughing I panic and have to get out of that situation right then. I feel I cannot relax in this kind of enviorment.

Certain realitives have not been much support..They have kept the truth away from me like I went to there house and have stressed so many times not to put my child at risk. Once I got there one realitive had a very bad flu.

They also have put great strain on our relationship, and have fell out with me because I would not let my child mix as there baby had rsv and was poorly. Christmas is coming and I want my child selfish as it may sound well for christmas. They have turned everything around on me saying I should not stop her getting her presents for christmas day I told them to post them to me. I feel to upset to have any realtionship and my husband has seen how upset it makes me. I have been told by medical staff not to put my child at risk knowingly, and this is what I try not to do.

I understand that she will catch all the normal coughs and colds but refuse to do this knowingly.

I feel I can no longer trust them so I have now decided after years of trying to go our own way.

I am sorry to rant but here is an outlet for me.

I just feel the only people that understand are people in the same situation.

I feel much better for talking about this and just want to be around people who understand.

Thanks for listening

Lillytree

 

[lillytree]

Hi I am new here and have a four year old who has cf. My story so far is she has had pseudomodus twice once when she was four months old and then just last summer, this was our 1st admission to hospital. It was a real shock as I knew that day might come but really was never ready for it.

I want to try to let her be a free spirit but find that when I am in the supermarket or park and hear people/children coughing I panic and have to get out of that situation right then. I feel I cannot relax in this kind of enviorment.

Certain realitives have not been much support..They have kept the truth away from me like I went to there house and have stressed so many times not to put my child at risk. Once I got there one realitive had a very bad flu.

They also have put great strain on our relationship, and have fell out with me because I would not let my child mix as there baby had rsv and was poorly. Christmas is coming and I want my child selfish as it may sound well for christmas. They have turned everything around on me saying I should not stop her getting her presents for christmas day I told them to post them to me. I feel to upset to have any realtionship and my husband has seen how upset it makes me. I have been told by medical staff not to put my child at risk knowingly, and this is what I try not to do.

I understand that she will catch all the normal coughs and colds but refuse to do this knowingly.

I feel I can no longer trust them so I have now decided after years of trying to go our own way.

I am sorry to rant but here is an outlet for me.

I just feel the only people that understand are people in the same situation.

I feel much better for talking about this and just want to be around people who understand.

Thanks for listening

Lillytree

 

[lillytree]

Hi I am new here and have a four year old who has cf. My story so far is she has had pseudomodus twice once when she was four months old and then just last summer, this was our 1st admission to hospital. It was a real shock as I knew that day might come but really was never ready for it.

I want to try to let her be a free spirit but find that when I am in the supermarket or park and hear people/children coughing I panic and have to get out of that situation right then. I feel I cannot relax in this kind of enviorment.

Certain realitives have not been much support..They have kept the truth away from me like I went to there house and have stressed so many times not to put my child at risk. Once I got there one realitive had a very bad flu.

They also have put great strain on our relationship, and have fell out with me because I would not let my child mix as there baby had rsv and was poorly. Christmas is coming and I want my child selfish as it may sound well for christmas. They have turned everything around on me saying I should not stop her getting her presents for christmas day I told them to post them to me. I feel to upset to have any realtionship and my husband has seen how upset it makes me. I have been told by medical staff not to put my child at risk knowingly, and this is what I try not to do.

I understand that she will catch all the normal coughs and colds but refuse to do this knowingly.

I feel I can no longer trust them so I have now decided after years of trying to go our own way.

I am sorry to rant but here is an outlet for me.

I just feel the only people that understand are people in the same situation.

I feel much better for talking about this and just want to be around people who understand.

Thanks for listening

Lillytree

 

[lillytree]

Hi I am new here and have a four year old who has cf. My story so far is she has had pseudomodus twice once when she was four months old and then just last summer, this was our 1st admission to hospital. It was a real shock as I knew that day might come but really was never ready for it.

I want to try to let her be a free spirit but find that when I am in the supermarket or park and hear people/children coughing I panic and have to get out of that situation right then. I feel I cannot relax in this kind of enviorment.

Certain realitives have not been much support..They have kept the truth away from me like I went to there house and have stressed so many times not to put my child at risk. Once I got there one realitive had a very bad flu.

They also have put great strain on our relationship, and have fell out with me because I would not let my child mix as there baby had rsv and was poorly. Christmas is coming and I want my child selfish as it may sound well for christmas. They have turned everything around on me saying I should not stop her getting her presents for christmas day I told them to post them to me. I feel to upset to have any realtionship and my husband has seen how upset it makes me. I have been told by medical staff not to put my child at risk knowingly, and this is what I try not to do.

I understand that she will catch all the normal coughs and colds but refuse to do this knowingly.

I feel I can no longer trust them so I have now decided after years of trying to go our own way.

I am sorry to rant but here is an outlet for me.

I just feel the only people that understand are people in the same situation.

I feel much better for talking about this and just want to be around people who understand.

Thanks for listening

Lillytree

 

[JazzysMom]

First let me say that if you werent scared at all, you would be foolish. Sadly many people including our own families dont understand how small things can influence a CFers health.

You cant keep your child in a bubble & yes she has to build a certain amount of immunity on her own, BUT for people to "disregard" your concerns is both irresponsible & selfish.

It wont be the last time you encounter this type of thing I am sorry to say. Just know that you need to stand your ground & be the best advocate for your daughter. Its easy to cast judgement when those people arent the ones worry from day to day what will happen & if your decisions are right/wrong.

Hopefully some of those in ?? will come around & rally behind you. If not....sorry, but its better.

HUGS

 

[JazzysMom]

First let me say that if you werent scared at all, you would be foolish. Sadly many people including our own families dont understand how small things can influence a CFers health.

You cant keep your child in a bubble & yes she has to build a certain amount of immunity on her own, BUT for people to "disregard" your concerns is both irresponsible & selfish.

It wont be the last time you encounter this type of thing I am sorry to say. Just know that you need to stand your ground & be the best advocate for your daughter. Its easy to cast judgement when those people arent the ones worry from day to day what will happen & if your decisions are right/wrong.

Hopefully some of those in ?? will come around & rally behind you. If not....sorry, but its better.

HUGS

 

[JazzysMom]

First let me say that if you werent scared at all, you would be foolish. Sadly many people including our own families dont understand how small things can influence a CFers health.

You cant keep your child in a bubble & yes she has to build a certain amount of immunity on her own, BUT for people to "disregard" your concerns is both irresponsible & selfish.

It wont be the last time you encounter this type of thing I am sorry to say. Just know that you need to stand your ground & be the best advocate for your daughter. Its easy to cast judgement when those people arent the ones worry from day to day what will happen & if your decisions are right/wrong.

Hopefully some of those in ?? will come around & rally behind you. If not....sorry, but its better.

HUGS

 

[JazzysMom]

First let me say that if you werent scared at all, you would be foolish. Sadly many people including our own families dont understand how small things can influence a CFers health.

You cant keep your child in a bubble & yes she has to build a certain amount of immunity on her own, BUT for people to "disregard" your concerns is both irresponsible & selfish.

It wont be the last time you encounter this type of thing I am sorry to say. Just know that you need to stand your ground & be the best advocate for your daughter. Its easy to cast judgement when those people arent the ones worry from day to day what will happen & if your decisions are right/wrong.

Hopefully some of those in ?? will come around & rally behind you. If not....sorry, but its better.

HUGS

 

[JazzysMom]

First let me say that if you werent scared at all, you would be foolish. Sadly many people including our own families dont understand how small things can influence a CFers health.

You cant keep your child in a bubble & yes she has to build a certain amount of immunity on her own, BUT for people to "disregard" your concerns is both irresponsible & selfish.

It wont be the last time you encounter this type of thing I am sorry to say. Just know that you need to stand your ground & be the best advocate for your daughter. Its easy to cast judgement when those people arent the ones worry from day to day what will happen & if your decisions are right/wrong.

Hopefully some of those in ?? will come around & rally behind you. If not....sorry, but its better.

HUGS

 

[ktsmom]

We have made some VERY unpopular decisions in an effort to keep Katy away from some KNOWN risk factors with extended relatives. They think we are nuts. She goes to school, they say, so what is the difference?

Well, the difference is that I don't KNOW that kids at school have "x", and I DO KNOW that certain relatives of ours DO have "x". I'm being vague on purpose because I don't want to mention any specifics. Just suffice it to say that I've been where you are and there is no winner in this situation.

I mean, seriously, I would love to be partaking of some of the gatherings that we are missing. I WANT my girls to spend time with extended family. But not at the very serious risks certain of these people pose to Katy. End of story. Hang tough and do what you think is best.

 

[ktsmom]

We have made some VERY unpopular decisions in an effort to keep Katy away from some KNOWN risk factors with extended relatives. They think we are nuts. She goes to school, they say, so what is the difference?

Well, the difference is that I don't KNOW that kids at school have "x", and I DO KNOW that certain relatives of ours DO have "x". I'm being vague on purpose because I don't want to mention any specifics. Just suffice it to say that I've been where you are and there is no winner in this situation.

I mean, seriously, I would love to be partaking of some of the gatherings that we are missing. I WANT my girls to spend time with extended family. But not at the very serious risks certain of these people pose to Katy. End of story. Hang tough and do what you think is best.

 

[ktsmom]

We have made some VERY unpopular decisions in an effort to keep Katy away from some KNOWN risk factors with extended relatives. They think we are nuts. She goes to school, they say, so what is the difference?

Well, the difference is that I don't KNOW that kids at school have "x", and I DO KNOW that certain relatives of ours DO have "x". I'm being vague on purpose because I don't want to mention any specifics. Just suffice it to say that I've been where you are and there is no winner in this situation.

I mean, seriously, I would love to be partaking of some of the gatherings that we are missing. I WANT my girls to spend time with extended family. But not at the very serious risks certain of these people pose to Katy. End of story. Hang tough and do what you think is best.

 

[ktsmom]

We have made some VERY unpopular decisions in an effort to keep Katy away from some KNOWN risk factors with extended relatives. They think we are nuts. She goes to school, they say, so what is the difference?

Well, the difference is that I don't KNOW that kids at school have "x", and I DO KNOW that certain relatives of ours DO have "x". I'm being vague on purpose because I don't want to mention any specifics. Just suffice it to say that I've been where you are and there is no winner in this situation.

I mean, seriously, I would love to be partaking of some of the gatherings that we are missing. I WANT my girls to spend time with extended family. But not at the very serious risks certain of these people pose to Katy. End of story. Hang tough and do what you think is best.

 

[ktsmom]

We have made some VERY unpopular decisions in an effort to keep Katy away from some KNOWN risk factors with extended relatives. They think we are nuts. She goes to school, they say, so what is the difference?

Well, the difference is that I don't KNOW that kids at school have "x", and I DO KNOW that certain relatives of ours DO have "x". I'm being vague on purpose because I don't want to mention any specifics. Just suffice it to say that I've been where you are and there is no winner in this situation.

I mean, seriously, I would love to be partaking of some of the gatherings that we are missing. I WANT my girls to spend time with extended family. But not at the very serious risks certain of these people pose to Katy. End of story. Hang tough and do what you think is best.

 

[lillytree]

Thanks thats the same that I get. I always get told well what are you going to do when she goes to school? ...Like you say its the fact that you know what certain realitives do have.


I am in your shoes to they think I am nuts and say there is nothing I can do...its so easy for them. I am standing my ground this time and I will hang tough. Glad to know I'm not alone in this. Our daughters health and wellbeing will always be number one


I notice your little one is the same age as mine. I also like your quote.


Thanks

Lillytree

 

[lillytree]

Thanks thats the same that I get. I always get told well what are you going to do when she goes to school? ...Like you say its the fact that you know what certain realitives do have.


I am in your shoes to they think I am nuts and say there is nothing I can do...its so easy for them. I am standing my ground this time and I will hang tough. Glad to know I'm not alone in this. Our daughters health and wellbeing will always be number one


I notice your little one is the same age as mine. I also like your quote.


Thanks

Lillytree

 

[lillytree]

Thanks thats the same that I get. I always get told well what are you going to do when she goes to school? ...Like you say its the fact that you know what certain realitives do have.


I am in your shoes to they think I am nuts and say there is nothing I can do...its so easy for them. I am standing my ground this time and I will hang tough. Glad to know I'm not alone in this. Our daughters health and wellbeing will always be number one


I notice your little one is the same age as mine. I also like your quote.


Thanks

Lillytree

 

[lillytree]

Thanks thats the same that I get. I always get told well what are you going to do when she goes to school? ...Like you say its the fact that you know what certain realitives do have.


I am in your shoes to they think I am nuts and say there is nothing I can do...its so easy for them. I am standing my ground this time and I will hang tough. Glad to know I'm not alone in this. Our daughters health and wellbeing will always be number one


I notice your little one is the same age as mine. I also like your quote.


Thanks

Lillytree

 

[lillytree]

Thanks thats the same that I get. I always get told well what are you going to do when she goes to school? ...Like you say its the fact that you know what certain realitives do have.


I am in your shoes to they think I am nuts and say there is nothing I can do...its so easy for them. I am standing my ground this time and I will hang tough. Glad to know I'm not alone in this. Our daughters health and wellbeing will always be number one


I notice your little one is the same age as mine. I also like your quote.


Thanks

Lillytree