Cystic Fibrosis and my Family

To those of you who don't know, my daughter has cystic fibrosis. It's a rather nasty disease that will more than likely end my daughter's life by the time she is 37 unless a cure is found and administered. I mostly live in denial about it, to be honest, but there are days when I am confronted by reality.

Right now, my daughter is as healthy as a small ox. She's about 38lbs of dynamite and regularly drives us batty trying to keep up with her. Her brother loves her, even if he's annoyed at times by her immaturity. Alicia, my wife and her mother, is a champ at treatments and loves Samantha like nothing else in this world. She is a testament to mothers of CFers all over the world. And then there is me...just trying to keep up.

I read a blog post last night from a fellow with cystic fibrosis and he was talking about faith. You can read it here. I recommend you going to the blog when you can. He did a good job on the subject, and there are some good comments on the post.

His post confronted me with the reality that I need to be useful for the Kingdom and the church as a father of a girl with CF. I took one step last night by writing the following:

I am the father of a little girl with CF. I'm also a Christian. Recently, my faith, as it relates to cystic fibrosis, was challenged. I'm in the Navy and my detailer (closest thing to HR we have) told me that I had to go to this little base in northern Virginia. The closest military CF center was Bethesda Navy Hospital, 75 miles away (90 minutes). I had prayed hard for God to send us anywhere but that base (and to one base in particular). Still, no matter how much I asked the detailer to reconsider, we were given orders to Virginia. I was angry.

I didn't blog about it at all and didn't even facebook it much, but I told anyone who wanted to know how angry at God I was. I even started conversations with "This doesn't mean I don't believe in Him..." The fact was that, even in my anger, I understood that God was over my family. That didn't take away my feelings of betrayal, however, like God had walked away from me.

That was a humbling time period for me. You see, about six weeks ago we learned that those orders had been cancelled. We are now leaving for North Chicago in less than two weeks. The CF center we have chosen to go to, at least for now, is a mere 30 minutes away or less, and they have a clinic that is even closer than the main center. the fact is that God knew a long time ago, even as he was testing me, that he had no intention of putting my family that far from support.

Yet I was hurt, and angry, and I wanted God to know how bad that hurt me. I'm embarrassed by my actions during that time, and have resolved to shut up more and complain less. God is sovereign in my life, whether I want him to be or not.

Maybe I'm not as angry as others, and maybe I am. But what I do have is hope. I have hope that my daughter will be healthy, that maybe a cure will be found, and if not, that regardless of the outcome and when she dies, I have a chance to be with her again. It is up to me to model the Christ I hope she accepts someday. That is my current task.


Mark n Misti said...

Dan, you and your wife are INCREDIBLY brave! I cannot imagine dealing with what you are. I am thankful that God is walking with all of you over there. It takes a special breed of family to make the most out of what life deals sir, are doing an excellent job!


The Navy Christian said...

Thank you very much Mark. I appreciate your thoughts! We aren't quite as cool as you make us out to be, but we do appreciate the sentiment!