Hello
My son is four and he has cf. my mother got skin cancer when she was a child. She had every single mole on her body removed, she underwent insane treatments, and even had doctors photograph her body to document her case (it was very uncommon to treat and cure her type of cancer back then). NOBODY ever told her what was going on! She found out from her grandmother over twenthy years later, needless to say she felt betrayed, confused, and furious. I was diagnosed with crohn's disease as a child and mother vowed to never keep my disease a secret from me. I watched my mother cry when I had setbacks, I saw how supportive friends and family could be, my mom gave me all the books and told me to read them when I was ready, I went to support groups. There were so many times that my mother didn't want to tell me the truth, I could see and sense the turmoil in her voice and eyes, but however hard it was for her to tell me she did it anyway. Yes, it was very overwhelming and scary, the thought of surgery, medication, death, etc.. was always in the back of my mind and over time it became a part of life but not what defined me. When my son was diagnosed at 18 months, the rush of emotions from my childhood and the thought of my son going through what I went through or even worse was devasting. I finally understood how hard it was for my mom to be honest with me. My son knows what cystic Fibrosis. He brought his nebulizer to school for show and tell and explained to his friends that the "dragon mask" helped his lungs. His friends were impressed and even tried it for themselves (filled with saline, and sterilized of course). My son was beaming with pride and after show and tell, they went back to all playing together. We have had to deal with extremely rude people as well. One lady took it upon herself to tell me that the oldest living person with cf lived in dallas and was 43, she said that right in front of my son. I wanted to slap the daylights out of her (I would say worse but this site won't allow me to be more graphic!) He was due to have surgery (tonsils, polyps, and adenoids removed a few days after she said that, he was terrified. Less than a week after the surgery, my grandfather passed away. My son asked me several times a day if he was going to die soon. That few weeks was one of the darkest times I have ever had. We chose to take my son to the funeral home, he was able to see my grandfathers body and it actually comforted him. About a month later he told me he was going to grow-up and die an old man and be with his "pawpaw". It made me cry. He looked at me and when I really looked at him iI saw such comfort, strength, peace, and wisdom in him that I know we will would get through this together. He told me that it will be okay, I know that cf will always be with us, but just a part of us.
Your son, with you , will be able to get through this. He is stronger than you think. Tell the truth to him, in a way he can understand. I think you should avoid telling him about life expectancy. If he does ask, tell him it's a possiblity but don't scare him. He will be able to deal with whatever life gives him, and you will too. I think it is amazing that you are such an awesome father. Despite the fact that your his mother left both of you, your son is lucky to have a father that will always be there for him. Good luck, and God Bless
But either way, Mini rawks!! Yaaaayyy! Love you, hun. <img src="i/expressions/rose.gif" border="0">