My baby has CF...

Sometimes that thought just cycles through my mind over and over and over. We have known about this diagnosis for 5 months now, but still, I can hardly stand to think about it. However, thinking about it is impossible to avoid. It is on my mind on a daily basis, some days hitting me harder than others. I know I should try to learn more about it and read the materials they gave us when she was diagnosed, but I still can't do it. We have yet to watch the DVD they gave us about families living with Cystic Fibrosis. Seriously, when is a good time to say, "grab the popcorn, lets watch this video about how this disease is going to affect our baby".  Frankly, I don't want to hear about it. I can't bear to think about what it could do to her lungs and how it is going to affect her life one day. There have been times, I have felt the urge to go to the Cystic Fibrosis Foundation website and peruse through the vast information available there, but once there, I start feeling frustrated and sad. So I stop. And instead, I direct all of my attention to my sweet, happy baby girl. I don't want the thoughts of that disease to rob me of the joy right in front of me. So for now, I try to focus on her and remind myself that she may have this underlying disease but in every other way she is happy and healthy and just like any other 5 month old!

So I will face all the details of this disease as they come. Thinking about pneumonia, and hospital stays, and home IV therapy, and lung transplantation is too much for me to bear right now. So I trust that if the day ever comes that we have to face those things, God will give me the strength I need to make it through at that moment. But for now, I believe He just wants me to trust Him and not get to caught up in the "what ifs?". Even though I can't imagine something happening to my baby, I am confident that if God allows that to come into our lives, He will carry us through it. And carry me it would have to be, because I wouldn't be able to do it alone. 

One way I can try to explain how I feel about it is by using this analogy:
Imagine being somewhere you love very much, a place that is very new and exciting with lots of new to things to see and do and experience. But there is a dark and ominous storm cloud in the distance and you know its coming in your direction. You don't know exactly how long it will take to get there, but you know its coming. And you know it has caused lots of damage and loss of life along its path. However, the weather is beautiful and sunny and just perfect where you so all you can do is enjoy all the wonderful things that place has to offer and pray that the storm miraculously dissipates before it causes too much damage. 

And one more thought: while my baby may have CF, CF will never have her!