Thursday, July 1, 2010

Our Sweet Ben

I wanted to write a post today, updating about our sweet Ben, and how well he's been doing, how much we've been enjoying him, and what a blessing he is. All this is very true, and so much more could be said, but unfortunately I have a different post for tonight.

We had a busy day today with a portrait sitting, visiting my husband's work to show off the new baby, a trip to the park for the big boys to play and ride bikes, and then out for ice cream. In my rush to get out the door for the photo appointment, I had forgotten to grab my cell phone, so when I got home this evening, we had messages on both our phones. Some were from the pediatrician's office, so I knew they might have gotten the results from Benjamin's newborn screening and called back right away. I had to leave a message, and then waited for the return phone call.

The phone nurse told me that the genetic test results had come back, showing that our son has two copies of the mutated gene for Cystic Fibrosis, indicating that he "most likely" has the disease. I was confused at first, because I had been told that first we would get the results from the newborn screening, that if positive would only tell us that he was either a carrier or had the disease, and we wouldn't know which until we did a follow-up test. She proceeded to read the letter to me word for word, which indicated that he had failed the initial screening, so they had already done the follow-up genetic test, and the result showed him positive for Cystic Fibrosis. I was completely unprepared to hear this news. The tears began as she continued explaining that the office will call us in the morning to talk to us about scheduling the next step in diagnosis, the sweat test, which will be done at the cystic fibrosis center. How I had hoped never to step into that place.

So, an official diagnosis won't be made until the sweat test, but with a failed newborn screen and a positive genetic test, we just have to come to terms with what we're most likely dealing with.

My first reaction is just to look at him and cry. He is so beautiful, so perfect, fearfully and wonderfully made. How can he really have this disease? I hold him and wish that I could transfer every defective gene from his body into my own. How can this be? And how, after last year, can we again be faced with such a devastating verdict for one of our children?

Tonight, I can only say, Jesus is the same yesterday, today, forever. He is the same God we were praising in the hospital upon Benjamin's safe delivery, the same God whose goodness I felt in its entirety as I gazed at him for the first time. Is He any less good in light of this? The supernatural peace He gave us about Benjamin in the last couple months of pregnancy still remains for us to take hold of. There is a reason that the peace I felt was not the assurance that Ben wouldn't have CF, it was the assurance that the God we serve is loving, and great, and strong, and that His grace would be sufficient for us in any circumstance. My hopes were high for a healthy baby, but he is here safely in our arms, and he is in the hands of the Almighty God whose plan for Benjamin was written out before he, or I ever came to be.


  1. Yes, yes - God is still the same. We have that to hold onto. At the same time, I grieve for you, that you have to face knowing this about your sweet son after losing your daughter. My prayers have been with you and will continue to be with you.xoxoxo

  2. I'm so sorry, Jess...I was so convinced that he wouldn't have CF but you are so right about the God we serve...He doesn't make mistakes and I know He has a great plan for Ben and for you, his mother...

    Huge ((HUGS)) and I will continue to pray for your sweet baby and for your strength!

  3. I am so sorry! You are such a strong family. I will keep you and your sweet baby in my prayers!

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  5. je suis désolée mais il peut être porteur de la maladie sans jamais la déclarer. Bon courage

  6. Oh Jess, I am so sorry to hear about this. You are right, He is the same always, it's just hard to see it that way sometimes. Praying for you sweet friend.


  7. Jess ~ just catching up on some of the blogs and read your news about your beautiful Ben... I am sorry that you are forced to face another obstacle, but glad to hear the hope and love in your words. He is gorgeous and such a tremendous blessing.

    Love and strength to you

  8. I'm sorry that the test came back positive for CF. I admire that you are leaning and trusting God to get through it all.