Will, I just, for the very first time in your life, sang you to sleep. I have sung to you before while you were asleep, but those couple of times were more instances of you tolerating or being unaware of the singing. This morning, your fussing and crying actually stopped when I began. I couldn't believe it.
Interestingly, I was singing "Jesus Loves Me, This I Know." It may sound silly to you, but I sort of offered up a mental prayer that I could comfort you and help you fall asleep. The enzymes have burned up your little bottom and have caused, or are associated with, tummy pains and problems, particularly at night. The last few days you have simply not been quite the sunny, happy baby I have known.
Ever since your diagnosis last Wednesday, I have gone through a range of reactions. At first I felt horrified that you were being diagnosed with CF. Then I tried to focus on the drs' reasurances that it was a mild variant and that, with treatment, you would lead a relatively healthy life. I told myself it would be like diabetes: we would have to manage it, it would be a nuisance sometimes, but it would not be fatal to you, or terribly disruptive to your happy life.
Then I began experiencing some denial. Your newborn screen was negative. Your sweat test, which has about a 1-3% rate of false negatives, was negative. The doctors admitted they were a bit baffled by your genetic test: one CF gene for certain, but they think there must be some T factor . . . They explained this part to me a few times in the hospital, and it made sense for maybe 20 minutes.
Yesterday I felt fear. You were napping without any baby clothes so as to air out that sore little bum. I went in to wake you so that you didn't sleep too long. You were on your tiny side and your ribs were just sticking out. I have never seen that on a baby in real life. And it is my baby. Your treatment doesn't seem to be working. You hate the enzymes bc they taste awful. You are refusing your food now bc you know I hide those enzymes in it. I feel helpless, and I find myself reverting to the position that it must not be CF, it must be something else. I don't know what to do.
Cuddling up with you this morning as I tried to help you take your nap, I was struck by one of the lines in the song that had mysteriously calmed you the moment I began singing:
"little ones to Him belong; they are weak but He is strong."
Little Will, did you know I had tears then? You do belong to Him. You are weak, but He is strong, and He loves you.
Maybe I needed to hear that as much as you.