The below article is by my 16-year-old daughter, Maddie, who has written an occasional article for my newsletter. She wanted to give you an update. “Many things have happened since the last time I wrote. I am living with my Dad in Pennsylvania. Living here is not exactly as I expected it to be, but nothing ever is as you expect. I thought the change would make it easier for me to make decisions about my future: where I want to live and what I want to do.
I wish it were that easy. The transition went very well. The high school is great, and everyone is very friendly and welcoming. I met a boy I like, and I’m friends with a couple of girls too. So in that regard I’m doing great. But when it comes to my mental and physical health, I definitely think there is room for improvement. I have Cystic Fibrosis, and I must rigorously take my medications and do my inhalation treatments to stay healthy. I admit it. I can be lazy, skip a medication, or forget to do my nebulizer. I can be stubborn in denying what is good for me. I can get into a funk and stay there a few days feeling sorry for myself.
I have ended up in the hospital a few times for not wanting to take care of myself. I don’t want to go back if I can help it. They tell me there will be a cure one day for this disease, and I must keep healthy until that day comes. I had a few reasons for making the decision to move here. I wanted to become more mature. I wanted to get away from my Mom so I could form my own beliefs. I wanted to reconnect with my Dad. I realize now that a thousand mile move across country does not mean maturity. I realize that new friends and a different family offer no escape from my responsibilities.
I cannot hide from myself. I am the one who has to grow up and accept the fact that no one can do my treatments for me. No one can make me healthy but me. I have not thought about death much, and I don’t think I am afraid of it. Rather, I think I am afraid of growing up. I am afraid of the future, what it may do to me. I am afraid of a time when my families will not be there to push me. You see, both my Moms, both my Dads have always been there to tell me what to do. I did not have to worry. They did it for me. I did not have to remember. They did it for me. And while they were doing all that doing, they were also telling me that the desire to be healthy must come from me. If they became upset with me for not making the effort to be healthy, it meant they loved me.
But I also felt guilty when I did not do what I was supposed to do, like I let them down. Maybe out of guilt I thought I deserved to be sick? Maybe I was pushing them away so they would have to prove their love over and again? I was twisting love into something unhealthy. Also, when it comes to my two families, the truth is it was easy to put them at odds with one another. They are very different in their beliefs; yet, they are the same in how much they want me to be happy, healthy. I was childish, and I did not let them down.
I let myself down. As one of my Moms says, I was sabotaging myself. My two families came together this Christmas and they talked, shared meals, watched movies. They were good to one another, and I was silent, did not know what to say. I know how to love them separately but having them together was strange, and I didn’t know how to feel. Their divorce was awful, full of hate and blame. Sixteen years have done much to heal them.
They were not having a problem, I was. I do not know if I am any more mature. I do not think I have escaped anything; I do not know exactly what I believe; I have still not made any final decisions about where I will live; I have not chosen a college or a career yet. I know that I have done well in taking care of myself these last few weeks. I feel good about that. I want to speak with my friend, Judy Ryan, in St. Louis, a friend I have grown to respect and trust, and I want to tell her I am thinking, thinking a lot about my future. I feel good about that too.
I feel good about healing myself.”