The Cloud of Uncertainty

I've always been of the opinion that babies were easy. If a baby's upset, it's basically one of three things: either the diaper needs to be changed, the belly's hungry, or the kid is tired. Anytime the baby's upset, you address these three things in order, and you have what is basically a happy baby. Fevers and rashes are the exception, in which case you usually seek medical attention by calling your pediatrician. No big deal, a quick visit to the doctor, administer some meds, and bottaboom-bottabang, you're back to the basic three.

Nathaniel has been a whole other ball of wax.

For example, our latest stint in the hospital. We decided it would be easier to have Nathaniel receive his 4 month vaccinations while in the hospital. He was in the hospital due to the compromised condtion of his lungs. Jacob brought home a cold several weeks ago, and Nathaniel picked it up. We were pretty sure he was over the cold, but he continued to be congested. The congestion was getting worse and worse, and when we realized that his breathing would actually stop at night due to the congestion, we knew it was time to seek a greater level of medical care.

We took him to the pulmonologist who wanted to stress to us that he was not hospitalizing Nathaniel due to a failure of ours. No, he was hospitalizing Nathaniel because Nathaniel needed a greater level of care than we could provide, not because we had not provided the greatest level of care that we could.

So they did round the clock breathing treatments every two hours and gave him steroids (prednazone) through an IV. 2 days later he was back to the boy we knew. He was smiling, laughing, playing, and interacting, and most importantly, breathing like normal, or at least normal for him. We decided it would be easier to make sure Nathaniel got his 4 month vaccinations and a shot of Synagis (which protects from RSV) before he left the hospital. The resident physician declined to give him a shot of the blood clotting factor prior to giving him the 5 shots in his thighs. When we asked the doctor about giving clotting, the doctor responded that he didn't need it if he wasn't bleeding.

We went home Saturday night with what we thought was a healthy baby with a sore leg (due to the injections). His right leg started to swell. And swell. And swell.

By Sunday morning, the skin around his thigh was taut. Lesley called the hemophilia treatment center nurses, who told her that it was probably a reaction to the injections. Not to worry, they told us, it would go away in a couple of days.

That didn't feel right to us, but what do we know?

We called again later because nothing we did seemed to help or comfort him. Same response.

Lesley decided to go the ER. When she arrived at the ER, Nathaniel had calmed down (read "quit screaming") during the car ride from Jefferson City to the Women's and Children's hospital in Columbia. There were so many people in the ER waiting room that they were literally seeing people in the hallway. Rather than check him in, Lesley pulled a fast one. She called the hospital and asked to speak with the on-call pediatrician. She spoke via the phone and described the situation.

The pediatrician told Lesley that the swelling was a normal reaction in infants to the 4 month vaccinations. Not to worry, go home, if it doesn't get better in a couple of days, then you have something to worry about. Lesley came home, but it still didn't feel right.

But what do we know?

Monday morning, the swelling was worse. Lesley contacted the Hemophilia Treatment Center nurses and made arrangements to have Nathaniel seen at 11:00 am. I met her at the doctor's office. It was a brief examination. Muscle bleed in the right thigh causing severe swelling. Nathaniel was given an IV in the left foot, a shot of clotting factor, and had to have an ultrasound done in order to make sure that blood was flowing through the swolen part of his leg to the lower leg. The danger of prolonged swelling like Nathaniel was experiencing is a condition called compartment syndrome, which (simplistically put) is when the swelling causes compression damage to the nerves in the leg, which could lead to long term problems.

Well, the blood was still flowing, which rules out the possibility of compartment syndrome for now. The doctor wants to see Nathaniel again on Tuesday to make sure that his swelling has gone down and he is actually out of danger of compartment syndrome.

Put all that on the back burner for a minute.

There is a book that was written in the middle ages on contemplative prayer called "The Cloud of Unknowing." The basic idea of the book is that when we enter true contemplative prayer, we enter a space (for lack of a better word) in which "knowing" is impossible, and actually futile. It's pure experience of the presence of God. God overwhelms our senses so that we do not "know" anything anymore. All we are left with is an overhwelming sense of the presence of God.

That's where I'm at with Nathaniel and his illness and all the possibilities of things that could happen as a result of his hemophilia.

I have experienced a greater degree of self-doubt and uncertainty about what I've known as a father since the day I saw Jacob's little face when he was born. Everything I thought I knew about being a dad, and frankly has worked fairly well up to this point (judging by the feedback we get on how good our children are) is out the window.

Is Nathaniel's swelling a normal reaction to his 4 month injections, as the doctors and nurses (even the hemophilia specialists) told us? Or is it an internal bleed like my gut was telling me that could lead to serious, long-term physical problems?

Is Nathaniel fussy because he's colicky? Or is he bleeding somewhere in his body that I can't tell?

Is he drifting off to sleep because he's tired? Or because he's having a brain bleed?

Is Nathaniel's breathing getting worse because he's contracted a cold? Or is he suffocating on his fluids because he's bleeding into the lungs or as a residual effect of the injury to his lungs he suffered when he was just 2 days old?

I'm overwhelmed by how little I know, and I live in a constant state of fear that my child is going to die because I guessed wrong. I'm really, really scared of guessing wrong.

Terrified, actually.

I hate that old cliche that "God never gives us anything more than we can handle."

At this point, that ranks right up there with, "Everything happens for a reason." And if you want to know how I feel about that one, see my earlier post.

And don't go quoting to me 1 Corinthians 10:13 either. That doesn't say God won't give me anything I can't handle. It says that whatever God sends our way, he gives us a way out of it. And I know what that way out of it is:

It's Him.

In raising Nathaniel (and Jacob and Caitlin, despite my strong sense of self-sufficiency and delusional belief that I had this parenting thing figured out), I am completely and totally and utterly dependent on Him. That's all I'm left with in my "cloud of uncertainty": the experience of my own powerlessness, lack of knowledge, strength, wisdom. In my cloud of uncertainty where I do not know what is the right thing to do for my child TO KEEP HIM ALIVE, I can only depend completely on my God. I have no knowledge, no insight, no wisdom, nothing that I need to care for this child (or Jacob or Caitlin). I am naked in the cold and the dark with not even the vaguest sense of where the light is.

In my cloud of uncertainty, I have nothing except the experience of my utter dependence on God.

I am completely dependent on my God.

That's where I should have known I've always been in the first place.