Still True

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Do you have a child with epilepsy? Even when life seems cloaked in horrible, God is still in control.

I didn't want to be discharged from the hospital a week ago.

As long as we were in the hospital, I had someone with more training than me there to respond if my boy had another seizure. Out of the hospital, I had butt valium.

Okay, so it's called diazepam, but it's technically Valium, and you administer it rectally to stop seizures lasting longer than five minutes (waiting shorter ones out), so we call it butt valium around here. What can I say? We're a fancy and refined people.

We left the hospital knowing that another seizure was 50/50. I didn't like those odds, but I knew the odds would move in our favor every day until a seizure-free year from now when his odds would go back to the typical 1-2% of any other kid. As I repeated that to encouraging friends over the past week and heard stories of one-time seizures that never happened again among family and friends, my spirits were buoyed.

We'd get through this. We'd be okay. 

But now I know that the next seizure is no longer "if" but "when." The title of a previous blog post was "Will he have another seizure? We just don't know;" by the same afternoon I wrote that post, the answer changed to "yes, yes, he will." For the first time today, I had to tell a stranger - the WakeMed nurse calling for Robbie's MRI next week - that my boy has epilepsy. And my voice broke as I said the word. As I explained to her that we know the drill since this is our third sedated MRI for a child, my eyes welled with tears because, if I'm completely transparent with you, it's not okay with me that I've become so comfortable with the sedated MRI procedure.

But you know what?

We'll get through this. We'll be okay.

Not because we're great. We're not.

Not because we have answers. We still don't really.

Not because seizure meds - if they're necessary - are good and precise and easy to figure out. They aren't.

Not because we like our doctors a lot. Even though we do.

It's felt like a terrible, horrible, no good, very bad week. For example? In no less than eighteen hours, I came down with a nasty head cold, my boy was diagnosed with epilepsy, and I was hit with a vicious stomach bug. I'm still reeling from all that (and running a fever each afternoon).

But the sweet thing about knowing Jesus is that even when I feel terrible, I can cling to someone who is wonderful. Even when life seems cloaked in horrible, we know who is still in control and has chosen this to be woven into His story of ultimate goodness in our lives.

In my last blog post before the word epilepsy was added to my boy's medical record, I included this favorite verse of mine: "And my God will supply every need of yours according to his riches in glory in Christ Jesus." {Philippians 4:19}

Because that's still true now, we'll get through this. We'll be okay.

 

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