Tuesday, February 2, 2010

Balancing it all..

Was wondering if anyone else out there has trouble balancing life with CF...I have 4 great kids, 3 without CF.  It seems like life is getting alot harder to keep on track. My oldest will be 16 in a week or so and that's a milestone that we all should be enjoying. But its hard for me to balance out the normal kid stuff with all the extra with Tyler.  Even going out to dinner as a family is a struggle for me because I'm so paranoid of Ty getting sick,  I know i am probably over-reacting but i cant help it . Everyone tells me not to keep Ty in a "bubble"  but it think there is a fine line between the "bubble" and taking risks with his health.  I guess as time goes on I will relax a bit, for everyone else in the house's sake. I read some of the other mom's of CF kids blogs and I wonder how they have so much confidence with everyday life. Sometimes its really hard for me to handle his diagnosis. I think alot has to do with the lack of education of CF, our CF team seems a little vague ..or maybe I'm just used to knowing up front what we are dealing with and then handling it..CF is not like that ..I don't play the waiting game well....


  1. Hey Kristine,
    I feel similar, I want to share the fear I struggle with everyday on my blog but I don't know how to even start.
    I am constantly worried about going out in public as well. People love to come up and try to touch Cayden and I hate it. People also tell me not to put him in a bubble and I know I say it too, but I also don't want to purposely expose him to hazards.
    I have lots of days where I cry and am angry at the diagnosis. Friends and family all tell me that crying and being upset isn't going to help Cayden but it is just so hard sometimes not to know what the future holds for this ugly disease.

  2. Hello there, I know how you feel.... Also mom of three older kids and one with CF.... It is also hard for me to know what to do or not to do... Our CF Team has been teaching us to just live.... Live like we always would, yes take percausions when needed, wash hands wash hands wash hands lol, but dont not enjoy life in the name of CF..... So I just try and look at the older kids, and if they get to do it so does he... Actually Lane is the most durable of them all... I say he is CF Made tough, and believe me they are.... So we just live our life to the fullest and I try and watch closely to the first signs of any illness and go get checked out right away.... Of course Lane is on an antibiotic ALL the time, and I know that helps alot to prevent illness for him... Anyway that is what our doctors say, just some food for thought.... (but I still worry, I am a mom, its our job) :) Of course every child is different, and every CFer is unique... Much love Marcy....

  3. look how cute tyler is!!

    i am sorry you are feeling so overwhelmed... i remember feeling similarly about 16 1/2 years ago, when my son was first diagnosed.

    first, i do think if you have any concerns about your cf team, it would serve tyler well to find a different doc. we went to three before settling with one that was the right fit, and we have been with him for almost 15 years. BUT, you could be right, that it is just the nature of the disease, coupled with your own newness to it all.

    i don't know the health status of mr. tyler, but if he is doing okay, i would encourage you to get him out and about. getting him exposed to some of those normal bugs might actually help develop his immune system. my son has grown up in public school, around people, in creekbeds, in oceans, on mountains and is actually sick less than the rest of us. i know it is different for everyone, though.

    please feel free to contact me with any questions you have or if you just need to vent. it is a VERY long road ahead, and you need support.