A Year Ago Today Our Son Was Diagnosed With Cystic Fibrosis.
Looking back at the day we learned of his disease.
A year ago we went in to our son’s 1 month check up at our pediatrician. It was going to be a normal visit where we just saw nurses and they were just going to grab his standard measurements.
When we arrived the women up front asked if we had received the voicemails they had left. We had not. They said that we would be seeing our doctor today, but she wasn’t available for 20 minutes or so.
So we waited.
We had no idea what was going on. We weren’t too worried. We assumed they wanted to check something else since Finn was born 3 weeks early. That’s a story for another time.
We finally got called in after about 40 minutes of waiting. We sat down in the room and they grabbed his standard measurements. We waited a few more minutes and our doctor came in.
She had a packet of papers in her hands, sat down and pulled her chair a little closer to us. She told us that she just received his newborn screenings. They were the blood tests from when he was born, the problem was that they didn’t put his name on the test. The tests were simply labeled “Baby Wood”. They didn’t even have our proper phone number. They somehow found us when we started seeing our pediatrician.
She told us that Finn’s test came back positive for Cystic Fibrosis. We didn’t know anything about CF. She explained to us that he will look like a normal child, but he will need constant medical attention for the rest of his life.
Then she said, “Will he live to be 80? Probably not.” That was a kind way of saying the life expectancy isn’t so great. It’s around 40 years.
We were taken back. We were scared. We were confused. Our entire vision of what our lives as parents was going to be was turned on its head. We didn’t know what steps to take next. Our parenting books didn’t prepare us for this.
Our pediatrician handled it very well. We learned later from another pediatrician there that our doctor cried about having to tell us. We are thankful for her. She left the room and gave us a minute to talk. We cried. And then we prayed. We prayed for clarity and strength.
We luckily have a great support system. We got in our car and called our parents. There were still tears. There was still confusion. It started to get better as we talked to our families.
We spent some time over at my parents house. It was a good time and talking things out. Things got even better.
It’s been a year since then. Now we give Finn 28 pills a day so he can eat his food, we do two sets of breathing treatments a day, and we still visit the Cystic Fibrosis Center in downtown Atlanta. We still get confused but we have a great system in place. There are Facebook groups with other CF Parents, the Cystic Fibrosis Foundation has been great, our church has rallied around us, and our little guy Finn is growing great. God has blessed us.
I wanted to write this story because May is Cystic Fibrosis Awareness month. With only about 30,000 people in America with CF we need all the exposure we can get. Thanks for reading my story.
Visit CFF.org to learn more about Cystic Fibrosis.