Turn Your Eyes Upon Jesus

In my attempt to make Camille's button feedings more enjoyable? comfortable? just darn bearable?, I bought a mobile to hang over her little bassinet in our bedroom where we do her feedings. I didn't have very high hopes for the mobile--it was pretty cheap--and although it hasn't done what I had hoped it would do--you know, make Camille smile and laugh and coo and clap in delight during her feedings--it has had an unexpected effect on me. It plays several songs, and one of them sounds like the beginning of the chorus to Turn Your Eyes Upon Jesus.

O soul, are you weary and troubled?
No light in the darkness you see?
There’s light for a look at the Savior,
And life more abundant and free!

Refrain:
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.

Through death into life everlasting
He passed, and we follow Him there;
O’er us sin no more hath dominion—
For more than conquerors we are!

His Word shall not fail you—He promised;
Believe Him, and all will be well:
Then go to a world that is dying,
His perfect salvation to tell!

When I hear that song on the mobile, I sing these words to myself, and I try, try, try to do just that. But I must admit, there are a lot of times when I want to turn more than my eyes upon Jesus. I want to throw all of my questions, all of my anger, all of my hurt at Him and just plain ask Him, "Why?" Isn't that so trite? Doesn't everyone want to ask God, "Why me?" But I have uttered those words over and over again, mainly whispered them desperately, often with tears running down my face. Why? Why? Why? Why is this happening to my baby, to my precious child? Why is this happening to my family? We have had such a difficult year already--why does it keep getting worse? Why, God, why?

These past few days have been particularly hard. In my last post, I had written that Camille seemed to be feeling better. On Monday, I had seriously thought we had turned a corner. Of course, I have thought this several times. Each time we change something, trying desperately to figure out what is wrong and how to make her more comfortable, things seem better for a day or two, and then they always seem to get worse after that. I don't know if it's just wishful thinking on our part that we keep thinking that this might be the time that we figured out what has been making her so miserable and fixed it so that she can feel better. I can't even count the number of times I have called my Mom to tell her that I think I have finally solved the problem, and Camille seems like she is doing much better.

Things this week have been the worst yet. I think it has been even harder this time because Camille had started smiling and was having some really happy moments. I kept telling myself, "See, it is so good that you went ahead and let them put in the feeding tube because look how much better she is doing!" Then, as they always do, things went back downhill and fast. Camille has been crying almost incessantly for the past few days. She has literally cried (and therefore not slept for more than 10-15 minutes at a time) since 7:00 p.m. Wednesday night. I am literally having to hold her down for her button feeds because she bucks like a wild bronco during them. She is also still refusing to take anything by mouth--she arches, chokes, gags, spits out, etc. I tried to give her a bottle today, and she acted like she didn't know what to do with it.

And then there's the news we got today. It should be good news, and I guess it is. Camille's chromosome test came back normal. She does not have a chromosome syndrome like the geneticist and neurologist had thought. This is good news, but also kind of scary, and a little frustrating. It's scary because if it's not chromosomal, it means that some other much worse genetic syndromes move to the top of the list. It's frustrating because it's just one more thing that makes Camille a complete mystery. It is so hard to hear over and over again the words that we have heard from countless doctors: "There is something wrong--she has something--we just don't know what." We were hoping that we would have our answer in the chromosome testing, and we don't. Again, that's good, but it also means more testing, more wondering, more googling (oh wait, I gave that up, right?).

So we continue to wait for answers, for relief.

Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.

And we find peace in the knowledge that the ultimate relief, the ultimate rest, even the ultimate answer, lies in Him.