Well, as everyone has said, we all have good days and bad days, some are easier,some harder, and in some ways some of it gets easier, and in others it gets harder. I have been doing this for 14 years and still have times that all I can do is cry, though, the tears are usually from not being able to control whatever is going on at the time.
Last time Nathan was in for a tune-up, Jan., a new psych doc came by to do a consultation. At the end of it he announced that my main problems were that I was a control freak and perfectionist, as if I didn't already know that. I have found that most CF moms tend to be a little bit on the control freak side of things.
You learn to take it one day at a time and not worry about the things you cannot control. Worrying is such a waste of time and energy and if I could get all the time back I spent worrying about nothing when it comes to my sons CF, I can only imagine all that I could have accomplished.
It does get easier as they get older because they can communicate with you and take some of the guessing and mystery out of whether or not they are sick.
Really, the area I am worse at is trying to figure out if the new bug he grows is my fault and could we have prevented it, which is even a worse waste of time. We have to learn to let go of the things we cannot control and give the control over to God every single day because He is really the only one that can control things for us. Plus when I give things up to Him, I often find comfort when I wasn't expecting it, didn't think it existed, and things just weren't as bad as I had thought they were.
CF is a lot to deal with and just when you think you are over it, in control, something else will change, but really, these kids are tougher than any other kids I know and so smart. Whenever I am having a bad day, I think about all the CFers that I know that are adults, have babies, and are doing just fine. When Nathan was born we were told that an optomistic goal would be that they would have a cure for CF by the time he was 5 years old and a realistic goal would be that they would have a cure in his lifetime. He is 14 now, so if the goal is realistic that a cure will be found in his lifetime, than those who are just now having babies should definetly be comforted that a cure must be near. I also take comfort in the fact that each year the life expectancy has grown since Nathan was born which also implies to me that those that are just now being born really ought to be expecting to live normal life expectancies or very close to it.
Expect to have good days and bad days but never forget that you are not alone! This has been a wonderful site since I found it and it has so many supportive people on here! As long as we have this site, we will never have to do this alone!
Last time Nathan was in for a tune-up, Jan., a new psych doc came by to do a consultation. At the end of it he announced that my main problems were that I was a control freak and perfectionist, as if I didn't already know that. I have found that most CF moms tend to be a little bit on the control freak side of things.
You learn to take it one day at a time and not worry about the things you cannot control. Worrying is such a waste of time and energy and if I could get all the time back I spent worrying about nothing when it comes to my sons CF, I can only imagine all that I could have accomplished.
It does get easier as they get older because they can communicate with you and take some of the guessing and mystery out of whether or not they are sick.
Really, the area I am worse at is trying to figure out if the new bug he grows is my fault and could we have prevented it, which is even a worse waste of time. We have to learn to let go of the things we cannot control and give the control over to God every single day because He is really the only one that can control things for us. Plus when I give things up to Him, I often find comfort when I wasn't expecting it, didn't think it existed, and things just weren't as bad as I had thought they were.
CF is a lot to deal with and just when you think you are over it, in control, something else will change, but really, these kids are tougher than any other kids I know and so smart. Whenever I am having a bad day, I think about all the CFers that I know that are adults, have babies, and are doing just fine. When Nathan was born we were told that an optomistic goal would be that they would have a cure for CF by the time he was 5 years old and a realistic goal would be that they would have a cure in his lifetime. He is 14 now, so if the goal is realistic that a cure will be found in his lifetime, than those who are just now having babies should definetly be comforted that a cure must be near. I also take comfort in the fact that each year the life expectancy has grown since Nathan was born which also implies to me that those that are just now being born really ought to be expecting to live normal life expectancies or very close to it.
Expect to have good days and bad days but never forget that you are not alone! This has been a wonderful site since I found it and it has so many supportive people on here! As long as we have this site, we will never have to do this alone!