looking for advice

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New Member

Date Joined Dec 2004
Total Posts : 2
   Posted 12/6/2004 1:24 AM (GMT -6)   
My daughter is two.  We found out she had cf when she was two weeks old.  I'm looking for suggestions on how to help her "cope" as she grows up. If you have cf what did your parents and family do that helped and what didn't help.  Obviously everybody is different, but I'd love to hear what you think. 

New Member

Date Joined Jan 2005
Total Posts : 2
   Posted 1/17/2005 6:46 PM (GMT -6)   
My sister is 34 and a cf patient. I am 38, so I grew up with her dealing with the cf. I think the most important thing is to let your daughter try things and not limit her because she has this disease. My sister always participated in PE at school and she played all the sports as she got older with no problems. I know there are lots of things that seem scary, but just try not to limit her. Her body will tell her and you what she can and can't do. Just think, your daughter is only two, there will undoubtedly be breakthroughs in her lifetime. Treating her the same as everyone else will go a long way toward her self-esteem, too. I now have a 6 year old son, and to advise you not to baby your child is difficult as I try to baby my son who is quite healthy. I think it's just a mom thing to want to protect, but your child takes cues from you. If you seem to her like she should be tired after a few minutes of playing, she will become tired. Enjoy your child!

New Member

Date Joined Dec 2004
Total Posts : 6
   Posted 1/18/2005 12:09 PM (GMT -6)   
   My daughter is now 20 and it is hard trying to balance cf and still have a normal life.I always encouraged Courtney to try new things and live and her dreams. My daughters CF didn't limit her until the late teens years when she was diagnosed with the joint complications and diabetes that can go along with CF. She participated in sports and choir and played the flute in band. Went on field trips and even spent 1 week in Hawaii.We always had conferences with new teachers every year so they knew her cough was normal and not contagious and that she would need some understanding but not overt sympathy.Being open with your cf center and asking their opinions on travel and such help too.I think all patients with cf are very strong and good natured people so that helps. Courtney has learned to at least try things and her body lets her know if it is too much. Also when the disease does seem to throw a curveball at her .....she sees a counselor. I love her to death and help her cope with the physiacl and what emotional needs I can but I can't fix it. And I don't pretend to know what she really feels. So giving her another outlet to talk about it helps her. Anyone with chronic ilness goes through emotions that sometimes they need an uninvolved party to talk to. You sound like a wonderful caring mom and I think you will do great at helping her adjust and feel supported.Hope some of this has helped and wish you the best.

New Member

Date Joined Aug 2004
Total Posts : 8
   Posted 1/23/2005 3:58 PM (GMT -6)   
My name is mary-rose and i am a 21 year old female with cf. my parents have been wonderful parents, so i thought i could share some things with you. they never made me feel like i was different from everyone else in a bad way. i mean as i started realizing that i had to take a lot of pills i obviously noticed that i was different, but i never felt bad about it. my parents made sure that my family and close friends knew what the disease was and that it was not contagious. a big thing is making sure that people understand what it. i was always open with the fact that i have cf, and i had a perfectly normal growing up experiece. i  played sports, and participated in a lot of things through high school. i am currently a senior in college and will graduate in may! everyone i know, knows about my cf and it dosent bother them at all. i also have a bf who i have been with for a while, so dont worry, your daughter is going to have a perfectly normal life(i mean for the most part-there are still the pills and other things) if you have any questions or concerns feel free to reply or email me at excuseyou@sbcglobal.net. i am sure you are going to be a great mother :)

New Member

Date Joined Mar 2005
Total Posts : 8
   Posted 3/16/2005 9:17 PM (GMT -6)   
Hi I'm sam and I'm 13
My advice is to always try to treat your daughter like every other kid. Also try not to be to pretective, i know it's hard but it will make her feel a lot more "normal"

New Member

Date Joined Mar 2005
Total Posts : 5
   Posted 3/17/2005 1:30 PM (GMT -6)   
I posted some info on specific coping skills that might be helpful to you on the Psychosocial Issues thread.
There is a great series of parenting books that include
Liberated Parents Liberated Children
How to Talk so Kids will Listen and Listen so Kids will Talk and
Siblings Without Rivalry--
They offer a lot of good information that is helpful for any parent and might be useful to you.
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