Cystic fibrosis, how should i feel???

my 2 yr old daughter has recently been diagnosed with cystic fibrosis, (a terminal illness for those who r not sure), when i found out i was shocked but not really upset, my attitude was more 'theres nothing u can do about just deal with it as it happens' is this wrong??? i feel somehow cold hearted as a cf suffers life expectancy is only 31 i feel i should have been devastated when i found out shouldnt i? or am i dealing with it the right way enjoying my daughter and just gettng on with it and saving my grief until the worst happens???? opinions plz???

Medical technology has boomed in the past 20 years, just think of what could happen in the next 20. It is a hard illness to deal with but as long as you keep in close communication with your doctor as well as maybe getting into a support group for people with cystic fibrosis it may reduce the difficulty.

The way I deal things like that, is to just hope for the best, and cherish what you have now. And maybe that's how you feel, like 30 years is far away, and I think that's normal.

Best of luck.

I think it is a combination of a bunch of things. First of all, part of it is maybe you trying to ignore it. It may hit you hard one night totally out of the blue.
I don't see anything wrong with your reaction. Your daughter is only 2 years old, and who knows what kind of treatments will become available in the future?!? None of us are guaranteed any amount of time with our children.
Just adore her and treat her as "normal". There will be some limitations on her, but don't impose extra out of fear.
Best wishes to you both. Now go hug your daughter and keep living.

My best friend has CF and lived to be 42 and had a great life. He took his meds but he did what he wanted~if he wanted to go to the bar and get drunk he did, with oxygen on the barstool. Once in a while he would even smoke marijuana when he didnt want to eat (doctors said that was acceptable) He drove, had a job, went to concerts did it all. We would give him a lot of compressions which kept his lungs clear as could be. Precussions is maybe the word, but basically we beat him on his back and chest. Had a lot of good years with Sparky and he lived a good life with not too much suffering. Actually he looked forward to his 14 day hospital stays every few months when he would go and get cleaned out and he would always stay in the pediatric ward to give the little kids hope. Nurses loved him, doctors and the kids loved him. Just take day by day and let her do what she wants when she gets older, because you never know when it will be the last day. Sparks parents would get upset , but the nurses said that is probably why he lived so long he just lived and did not baby himself and did what he wanted to do when he was up to it. He was an inspiration to all and I hope your daughter will be able to have a life like he did. Set her mind now and please dont dwell on her disease. Let her experience life and school and activities and when the time comes she cant you will know it but dont restrict her. I wish you well and stay strong~I will pray for you as well.

I know exactly how you feel. My 9 y/o daughter was just diagnosed 5 months ago. It was sudden, unexpected, we spent 2 weeks at the hospital a few days after finding out. At first I was devastated, then hopeful, mad, now I think I am leveling off. I even went through the "They're wrong" denial phase. At times I do not trust the Drs and therefore I go to support groups for answers. I think my daughters Drs are finding the baseline for her and are testing different things, but I took it as they were experimenting. I just moved to Cali as a single Mom and have no support, but I have found support here which you may find helpful also. Another good site is cysticfibrosis.com, lots of nice people there too! If you ever need to vent, trust me I know...I am here.

Kelly, your reaction is fine...I was similarly "Strong" about my own daughter's diagnosis for a couple of weeks. Then it smacked me upside the head and I was in a depression for months...it comes and goes now but on the surface I treat her like my other daughter and we just do the routine treatments as part of daily life. Get on CFinfants and toddlers, get a good clinic or pulm. doc, find a friend or two who care enough to listen and undertand they don't "get it". BTW, average life expectancy is 36 years...there are some CF patients in their 70's and some children still die from it very young. You do today what you need to do so that your baby can have a good tomorrow. hang tough!
KMcG