Dear Mum of three year oldI am the Mum of a beautiful brave eighteen year old daughter. When she was dx at 10 wks, I was hanging her clothes on the line, in tears, wondering if there was anyone else in the world who knew how I felt. I didn't want to get up the next morning in case the little book on CF would be on the table where I had left it. I didn't want nurses and physio's some into my home and teach me how to do things I didn't expect to have to do to my baby. I didn't know how or who to tell about CF or when or why.I cried. Over the years I have cried in front of doctors, nurses, physios, family,friends, coaches,bossesreceptionists and I am sure many others and particularly in front of the people who take blood!! I don't think we would be normal if we weren't heartbroken to have a child with an ongoing lifelong illness like CF. Because of the ongoing nature of CF and all the treatments involved and how it can affect the entire family, there are lots of losses along the way. Firstly, the loss of the "perfect" health of our baby and at the time we need to grieve for that and for some of us, it takes along time. We then feel the loss of control or power over our childs future. (no matter what we do, they still have cf) One lady I know took out a loan and handed the cash to the CF doctor and pleaded for him to make it go away. We can't do that. We have to treat them as they are, normal kids who also have something called CF. They are normal kids, they look like every other kid and they can usually do anything and everything that other kids do and if they choose nobody needs to know they have cf until they or you are ready. Along time ago, I decided that I am not going to waste time worrying when someone doesn't understand. As long as we are doing what is necessary and we are happy then who cares what others think. If my friend can't see it, so she thinks its not there.. so what.. she will get there at some stage. I can't expect everyone to understand, particularly when it's not visible(which is more of a plus except when it comes to education and fundraising) . I probably don't understand some things about my friend because I haven't been through them either. The future for kids with CF is bright. The medications and treatments have improved, more people are becoming aware and there is lots of research going on. The basics of looking after someone is cf is still the same. Good nutrition, enzymes, vitamins, antibiotics, physio, nebs, extra physical activity trampolining, blowing (fun things so that physio isn't such a pain in the butt for us and them) and attending clinics and taking on board new treatment regimes that may suit your child. I hope you find someone to share your thoughts with. I am very fortunate to have a Mum and sister who quite frequenty just listen when I share my thoughts and yes I usually cry too. It doesn't get any easier each time there is a struggle to overcome because they are our kids and it does break our hearts but I hope you can make time to go out with friends and to exercise and to keep working on a good relationship with your hubby. I know it is hard. My husband rarely shows his emotions but boy does he care lots and when we do try to talk about our concerns, we both end up emotional and we usually feel better afterwards. My husband says that living with cf is like having a shark lurking in the background so you are always on guard. A few years ago I read of something called "chronic sorrow". For example, when your child is dx with cf, you grieve. the grief goes on as you watch your child struggle with cf, they begin to gain awareness of the consequences of it, get upset when they feel robbed as they have to do things other kids don't etc etc. The person who termed chronic sorrow suggest that there are episodes of sadness during which time it is felt deeply and the smaller griefs are resolved somewhat over time, thereby allowing the sadness to be pushed back and then we have periods of relative normalcy, satisfaction and happiness.( I think this is how it is for the most part) However, some of the sadness remains and can vary in intensity betweeen situations and people. I know this is how I feel and I think we handle living with CF well and I have a happy, well adjusted young adult with CF who has completed Tertiary Education, Studies and has a part time job that she loves. She neither flaunts nor hides CF and recently said that if she had her time over again that she couldn't say she didn't want CF because it is a part of who she is and why she is the person she is and she wouldn't have had many experiences and met some amazing people. She did lose someone very special to cf but she would prefer to have all the struggles and have had that short but wonderful friendship.. All else I can say is.. when I feel down or overwhelmed.. once I go out, whether for a walk or to the park or a game of tennis or a few wines with the girls . I most times feel so much better and things don't seem as bad. But there are still days when I just want to stay inside with my pj's on and have a cry and whats wrong with that!! Nene