The Talk

People have asked what I've shared with my daughter. They want to know how much I've told her about my condition, this disease, and the outcomes of not surviving lung transplantation. I've told her mostly everything. The next question is usually: "How is she handling all of this?"

My daughter is handling this as well as can be expected. She will be nine years old next month and she has a pretty good grasp on what is happening and how lung transplant works. She knows that I am really ill and that I can die. I can die waiting for lungs. I can die in surgery. I can die of infection or rejection after transplant. She's probably more matter-of-fact with it than most of the adults I know. No walking on eggshells, nothing to hide. Just pure honesty and curiosity. She's been going through all of this with me... some times in silent contemplation and some times with extra cuddles and a few tears.

"If you are not here," she asked the other day, "is it my job to make sure daddy eats healthy food?"

I love that kid.

I sat down with her on Friday and I explained that we needed to work on funeral plans, just in case. She expressed her feelings of how she thinks it's unfair because I was healthy and never smoked and there are other people who do not take care of themselves and will live a whole lot longer. I agreed, it sucks. And, it seemed, once we both acknowledged it sucked, it was easier to move into talking about organ donation, cremation and burial, and memorial services.

I know a couple different women who lost their moms when they were young. Their moms downplayed their illnesses so much so that one of them told me she did not realize her mom was dying. She didn't even know what hospice was. They both expressed disappointment that they had missed that opportunity to know beforehand. Each had their own reason or rather, a few different reasons, they wish they had known. Had they known, the death would not have been such a shock. Had they known, they would have asked more questions or spent more time with their mom. Had they known, it would have been easier to get through the hurt of losing her.

I am doing my best to provide the opportunities--opportunities these women missed--to my daughter. By doing so she can work through some of the emotions and ask questions while I am still here. When I first learned how serious my condition was I found a publication by the American Cancer Society called "Helping Children When a Family Member Has Cancer: Dealing With Diagnosis" helpful. It gave me simple steps to start a conversation. And, even though it is geared towards cancer patients, I feel the publication can benefit anyone facing terminal illness.