Am I going to die from CF?

I was folding clothes and putting them away in Mike’s dresser drawers. It was just an ordinary day. Mike was in no particular distress. He was 7 years old. I will never forget this day. Mike was sitting on his bed fidgeting with something in his hands and he said, “Mom, am I going to die from CF?” I felt the familiar stab of pain in my chest, my head scrambled to find the words… I had thought about this before….even anticipated it to some degree….but not now, not yet, my son wasn’t really thinking that this fatal disease could actually kill him was he?? Or was he? Not missing a beat I continued to place clothes in his drawer and appear to be unscathed by his question. “Well, I don’t know Mike,” I began to reply, “none of us really knows how or when we’re going to die. There are lots of ways people die. Some people die from cancer, some people die in car accidents and some people die from CF. What do you think, Mike?” By now I had stopped what I was doing and was sitting next to him on the bed. “Well," Mike began apprehensively, "I don’ know but sometimes I just think that I’m gonna, choke and choke and choke like this (made these horrible gasping sounds) until I just can’t breathe anymore and then I die.” I put my arm around him and hugged him not sure of what I was going to say next and he continued, “I just don’t want to die. . . because I’m afraid I’ll miss you. I don’t want to be by myself, without you.” “Oh, Mike,” I said confidently, “You won’t be by yourself, you will be with Jesus. He will be with you every second and forever.” Getting more stressed Mike said, “But mom, I will miss YOU!” And somehow in that split second God gave me words that I had never thought of before, “Oh, honey, I’ll be with you. I’ll be right there. You see, there is no time in heaven. So I will be right there with you because I believe in Jesus, so I’m going to heaven too!” A sense of peace began to replace the stress on his face. “The Bible tells us that 1000 years are like a second in heaven because there is no time. And mom isn’t going to live to be 1000 so I will be there in less than a second.” Then he gave me a big smile. I don’t remember anymore of the conversation after that point. I only remember the peace that Mike had from that point on. He was stressed about leaving mom and others he loved behind and this very Biblically correct answer - that I can only thank God for - gave him the peace he needed. Someone he loved and that loved him very much, Jesus, would take him to heaven and everyone he loved would be there with him. Divine intervention.

I have been saddened these past few days at the news that Conner Jones, after 7 years of battling CF, passed away on my birthday, just two days ago. It seems that kids should not have to think about death. Their little hearts and minds should not be burdened with sickness and disease. The pain of children dying would be unbearable if we did not have faith. It is because we know that heaven awaits us that we look forward to eternity with loved ones. Conner’s mom, Sarah, taught him about Jesus. What a wonderful mother and father Conner has. My prayers go out to this family. Breathe easy little Conner, laugh and play at Jesus’ feet. Peace, peace, peace to Conner’s family.

To all of you in the trenches fund raising and helping to find a cure for this disease, we thank you. We are blessed by you. We will continue to fight so someday no one else will lose a child to CF . . . so no one will have to have this conversation with their child about dying with CF . . . We need a cure. Thank you for your support… no other words.