Traversing the Unfamiliar

I am new to the world of cystic fibrosis as I do not have this struggle, unfortunately my son does. We had no idea that my partner and I carried the genes for him to receive such a diagnosis but we are learning as we go. We are still giving him the life he deserves and when he can tell us his hopes and dreams we hope to give him those too. 

When you are pregnant your doctor will ask if there is any screening that needs to be done to make sure your baby is healthy. We completely passed on this for we had no concerns health-wise that we knew we needed to be aware of. So when your baby is born they go ahead and do what is called a newborn screening they prick their heels to get some blood for the test they will perform now you do not get the results from this until after a couple of weeks. At that two-week mark, our world stopped spinning and seemed to crash around us all from one phone call. 

Let me paint a picture I am sitting at home holding my sleeping two-week-old when I receive a phone call from his peds doctor. I assumed it was just to get insurance information, not something that would change our lives. They proceeded to tell me his newborn screening came back and was positive for Cystic Fibrosis (I will refer to this as CF from here on out). We all know that out-of-body experience where you are still doing the things you need to but feel worlds away from what is happening that is what happened to me. On this phone call, they immediately set up an appointment at Children Mercy for the next day possible. At this point, my first instinct is to call my mother. Mother knows best after all and I am so glad I did. She helped to keep me from spiraling down a rabbit hole trying to research as I knew nothing about CF. We did manage to find the one website that was safe for me to get information, Cystic Fibrosis Foundation. This site helped me to understand what my life was turning into without having to fear for my son's life. I felt secure in the information I was learning. 

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Our world has become one of balancing medication and having to track everything from his feedings to when and how much of his medication he is receiving down to how often we are changing his diaper. My family has been a huge support through this as my parents drive us to all his doctor's appointments. my spouse's work has been so understanding and providing time off without worry even with all this support I still worry for my child and the life he will live. CF research has come a long way and we are lucky enough to have medications that we know will help him as he grows. So for those who are like me and are thrown into an unfamiliar world, there is hope out there and so much more!