I was just wondering if any of the other parents, or maybe people with CF, ever go through this. Our daughter is 4, with CF, and doing really well. She was diagnosed at 2 months old due to failure to thrive and is pancreatic insufficient. Aside from the meds and daily physio treatments it is almost easy to forget she is "sick", now that the meds are under control. I think about it everyday but I do not worry per say. I would not say I am in denial at all but I don't worry about her like I did when she was first diagnosed.Then there are days, like today, where she starts to get a cold and I panic. Suddenly the realization that she has CF hits me like a brick wall. I find it hard to sleep and I suddenly worry, even though it may just be a common cold. I then find myself looking up stuff on the internet and message boards trying to find someone that understands.I'm not really sure what the question is but I feel like I should worry more, or that maybe I worry to much when I shouldn't. Can anyone relate?
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Reality Check
- Thread starter anonymous
- Start date
I am not a parent, but I don't think thay you are any different than any other parent. All parents worry about there kids, especially when they are sick. You said that your daughter is doing very well and that everything is under control, sounds to me that you are doing a great job with her. If there is one thing that I would recommend is to keep her active and make sure she gets some exercise.Dave 29 w/cf
I am glad that your 4 year old daughter is doing well. I completely understand your feelings. My son turns 8 in two weeks, and he was just diagnosed last year. He takes enzymes and had nasal polyps removed this summer; however, his lung function is perfect, and he has never had any type of pulmonary problem. Like you, I can sometimes almost "forget" that he has an illness as the days pass and he remains so healthy. But one sneeze, cough or runny nose sends me into a panic wondering if I should rush him to see his doctors. Like Dave mentioned, physical activity is so important in order to keep your daughter's lungs healthy. Grayson's diagnosis was a complete shock to us becuase he has always played soccer and baseball. He swims, jumps on his trampoline and rides his dirt bike. In retrospect, I think his high level of physical activity has contributed to his good health. I don't really have any great advice for you because it appears that I am your same position. I just wanted to let you know that someone out there is going through the same thing. Take care.
Thanks Michelle. It is good to know that others feel the same way that I do. Ashley is an active child and is involved in swimming, dancing and gymnastics. I guess her activity keeps her healthy but it is always so disturbing when they catch a cold or flu. I guess it will always be a bit of an emotional rollar coaster for us and that is something I will just have to accept.Heather
Hello my name is Angie i have two CF children one is 11 yr grl and a 5 yr old boy when my grl was little she was very sick and we did not find out about her having CF till my son was 6 months old after he stoped growing and had a few hospital stays for respitary problems in the past yr my grl has bin in the hospital 4 times and the last stay it hit me like a ton of bricks and a good friend said its about time i think as parents when we realise that we dont have complete control of everything for are kids its a harsh reality ppl think i'am a strong women but in the darkness of my heart i cry everytime i notice just the slightest change in my guys cough or there eating or sleeping habits. my son is just 34 pounds and there is no joke its hard to be a parent of a sick child but as long as we can answer honestly in are hearts and to are children that we are doing the very best for them what happens after that is soley left in Gods hands and it normal to be scared without fear we would not care and its ok to cry only in are weakness lies are true strengh i relate very well . rd2ange@aol contact me if you want Take it easy your not alone
HollyCatheryn
New member
I would just like to say that no one can live on high alert all day every day. It is probably a very healthy thing that you find yourself in a groove with your daughter's CF. It would be hard for her to feel very normal if you were panicky and supervigilant constantly. I don't think that momentarily forgetting about CF (especially the gorey statistical details) is a bad thing. She is first and foremost a little girl - your little girl - then she is a child with CF. The Dr who diagnosed me when I was 7 mos old wisely told my parents that they had to decide before they took another step what they wanted more for me. Did they want me to live a life full of joy and rich with experiences, even if it was short, or would they prefer to shelter me away and protect me from every germ in order to hopefully extend my life by a couple of years. I know my parents have bouts of worry - I do, too - but they did a great job of letting me be a kid first. Sounds like you are teaching her well that just like every kid has to brush their teeth and eat greens to be healthy and enjoy their life, she has to take care of her body too. Even if you eventually talk yourself down when you have those bouts of panic, it helps to ensure that nothing is going to slip by. Meaning, if something in her health starts to change, you are aware of it so as to act quickly when needed. I think you are extremely normal and sounds like a very loving parent. She is a lucky girl to have a parent who can balance life and love.