Happy Graduation Day Caleb

It was a little over 19 years ago. Two young kids were excited to be having a kid of their own; their first one. Alice and I walked into the room to get our first ultrasound. We were so excited. We would actually get to see our baby. We would find out if it was a boy or girl. We didn’t care what the gender was, just so long as he or she was healthy.

The conversation with the ultrasound technician was light hearted at first. We were just so giddy. We learned that we would be having a boy. We saw his hands and feet and his beating heart. We were amazed at how God had created this little person. But then the technician turned quiet. She had a concerned look on her face. She said that she would be bringing in the doctor to take a look at some things.

The doctor came in and finished the ultrasound. He said very little. After he was done, he had us step into another room. We weren’t sure what was going one. Is this the way ultrasounds are normally done? We didn’t have a clue.

The doctor came into the little room and said that there was something seriously wrong with the baby. He probably wouldn’t make it full-term. He then asked if we wanted to continue the pregnancy. What?!? Our world had just suddenly turned upside down. He said in this situation, most parents choose to end the pregnancy. So here we were… a few minutes ago, we met our first child. He was a boy. He had two hands and two feet. We saw his beating heart. And now we were being asked if we wanted to end our unnamed son’s life. Alice and I looked and each other and told the doctor this was not an option.

The pregnancy was very difficult for Alice. There were many more ultrasounds, many hospital visits, bed rest, and steroid shots. Our baby came early. We named him Caleb because he had a different spirit. Right from the beginning Caleb baffled the doctors. They knew something was wrong, but they weren’t quite sure what it was. It was sometime later that the doctors had their diagnosis. Caleb has CardioFacioCutaneous (CFC) Syndrome, a rare genetic condition. At the time Caleb was born, there were less than 100 known cases of CFC Syndrome. Today, there are less than 300 cases worldwide.

Over the years, Caleb has had many challenges. We’ve seen the hospital room more times than we care to remember. He has visits to many different doctors throughout the year. Through it all, Caleb has persevered. He has never once complained. He always has a smile on his face. He’s always quick to talk to you about fish, dolphins, whales, or dinosaurs.

A few days ago, he accomplished a major milestone; he graduated from high school. The baby that we were told shouldn’t be born, completed 12 years of schooling. I thank God for the miracle that Caleb is. I thank God for the countless medical personnel who have cared for Caleb. I thank God for all the teachers and assistants in his life that didn’t give up. While he has learned a lot and accomplished much, I think it’s me that has learned more from him. He has softened my heart and taught me compassion. He has taught me perseverance and determination. He has taught me how to be joyful at all times and grateful in all situations. As he walked across the stage to receive his diploma, I thought back to that turning point 19 years ago in that doctor’s office. We didn’t know what the future held. But God did. Because of the decision we made, we have this amazing young man. My life is richer, sweeter, and more blessed because of him.

Now that Caleb’s formal education is complete, we are again faced with an uncertain future. What will adulthood look like for Caleb? We don’t know. But God does. And I know that it will be richer, and sweeter and more blessed because Caleb is in it.

Caleb, your mother and I are so proud of you. We love you very much.

calebgrad
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Happy Graduation Day Caleb

2 thoughts on “Happy Graduation Day Caleb

  1. Elisabeth says:

    I just found out my son has CFC Syndrome. He is 3 months old and has been in the Nicu his whole life. This article is enlightening for me. It helps to know there’s hope. My baby has been baffling doctors from the beginning as well, but it’s nice to know now what is wrong with him. It has been a very difficult diagnosis, but we know God put him in our lives for a reason. I’m very happy I came across this article. Thank you!

    1. Hi Elisabeth, I’m so glad you found this post and I’m glad that you found it helpful. Be sure to connect with other CFC parents. There are some pretty active groups on Facebook and Yahoo. I hope that you have been able to connect with CFC International. The website is http://www.cfcsyndrome.org. My wife and I will be praying for you and son. If there is any way we can serve you, please let us know. Blessings!

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