parent with cf:

[ray65roses]

I have cf and a daughter who does not have cf. I wanted to know if there were other parents with cf and how well do your children handle the stress?

 

[Dea]

I am a mom with CF. My daughter just turned 7 this month. I think she does quite well. I have tried to explain to her the best I can and as much as I can about CF without scaring her. Right now, I dont believe she is under much stress....thank goodness! Can I ask how old is your daughter?
Dea
31 w/CF and CFRD

 

[ray65roses]

MY daughter will be 13 next monday. It was eaiser when she was little, but now that she has gotten older she understands more about cf and has seen me sick too many times. I limit her as much as i can to my medical care. But i know that it is hard on her. Thanks for your reply at least i don't feel so alone.
Sincerely,
Martha

 

[anonymous]

I know this isn't really the topic at hand, but I am wondering how you all did with your CF and being pregnant? I am getting married and we are talking about having kids, currently my health isn't the best I believe my FEV is 56%. I just want to know about the pregnancy. I know HollyCatherine has a site but I need more from people. I do VEST therapy three times a day and on IVs about every three to four months and work part-time. How were the pregnancies on your health? Do you have good supports systems, such as husband or extended families? These questions are really for anyone with CF who has had children!

thanks
Sarah 27w/cf

 

[anonymous]

Martha, I know being a parent with CF, there are difficult times. Especially when the chest 'flares up' with an infection. I used to focus on getting better and often felt I was an inadequate parent when I was too tired from coughing to cope with the basics of child rearing and house-care. I know I used to get impatient with little things that would irritate my sick moments, the sheer frustration of not having energy to deal with the simple things...Looking back over the years and talking to my son, along the lines you raised this topic, he has been a great son and given me much support and encouragement through the tough times. He has been there for me as a son and good friend. I believe he has learnt first-hand that life was not supposed to always be a bed of roses!! I never once heard him say he wished things were different. He is very aware of CF, but like me, we do not allow it to dominate our lives. Good luck with your future Martha.
Cheers Eileen.<img src="i/expressions/sun.gif" border="0">

 

[anonymous]

Thanks to everyone who replied. It has been nice to here from other moms. One thing about this illness and my daughter's own is that it has made us very close. But as her mom i do worry about the stress, You see my daughter didn't get cf but in a weird twist of fate she did get ewing sarcoma a form of bone cancer when she was five. So because of all of her medical care and mine sometimes i just worry about the stress on her. I know that she has never regreted a minute of our lives but i also know it has been hard on her handling the way people treat us. But i just remind her that people fear what they don't understand. My daughter and i are both doing well. I do well in the summer the winter is rough and my daughter has been cancer free for four years and fate has dealt us another blow she now has developed allergies so severe that she breaks out in hives and cannot stand anything to come in contact with her skin. I know she will get through this she has a spirit that will not give up and the lord watching out for her.