Wednesday, May 07, 2008

Morning Song

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.


Tat said...

I love that song. And I love you.

Monica Merced Rich said...

Oh, Allie. I'm so sorry. This post made me tear -- and put so much into perspective. Forgive me for whining in my blog post of yesterday.

Paul & Sarah said...

Alexandra, I had no idea. I'm so sorry! I hope taking the enzymes goes a little better.
I'm glad you both were able to find comfort in that primary song. I'm not familiar with it, but I want to learn it now. We love you! Keep us updated!

Alexandra said...

It isn't a primary song. It is just an old Christian song that our primary should be singing, now that I think of it!

Lauren Horsley said...

I don't know you at all, but I want you to know that your post touched my heart and brought tears to my eyes. You and your sweet baby will be in my prayers tonight. Hang in there.

On a side note, all my little ones suffered through awful bum rashes and I posted on my blog about the solutions I found because I wanted to pass along the info. to help other moms - here's the link to the post if you're interested.

Your new friend,


Audrey said...

We will keep little Will in our prayers. It must be so hard dealing with this. I love that line from the song that you sang Will. How sweet that he was comforted too.

Jenny said...

I am so sorry to hear the news about little Will, but thank goodness he has such a good mother to look out for him. My mom used to sing that song to me as a kid, and I agree with you that we should sing it in church.

Michelle said...


You are one sweet mom. That's for sure. What a sweet post. I am so glad you were able to sing him to sleep. He's the sweetest little thing.

woobers_mom said...

This is such a wonderful little song, and one that I learned as a child. I wonder why it is not included in the repertory for primary songs.

You spoke quietly to Andrew, telling him to be careful with Will. "He is sick," you told Andrew.

Will has many blessing in his young life. You, Brigham and Andrew are among the most precious.

Thank you for being so careful and tender with baby William. We love each of you very much.

Carolina said...

Just wanted you to know I am thinking of you. Hang in there.

Lyndsay said...

I'm sorry about Will's diagnosis, but also very optimistic for him based on my experience with a good friend and her brother who both have CF. Her brother has a mild form of CF (like Will) and pretty much lives a normal life and has a darling little family.
Still, I can't imagine how hard it would be to have the initial negative diagnosis only to have it change.
You're in my thoughts/prayers.