Friday, October 24, 2014

When broken won't break

Don’t you hate when that weird sound your car miraculously disappears like Houdini when you take it to your mechanic. You describe the noisy malfunction the best you can but your mechanic just nods his head politely while you exhaust your vocabulary of non-mechanical terms. That’s what our trips to the hospital with Allie feel like.

Ever since we brought Allie home from a San Francisco hospital in June of 2007 after emerging from a coma induced by a severe brain injury, her hyper-excitable neural networks have caused seizure activity. The way these episodes have manifested themselves have evolved over the years making them difficult to describe to doctors and even more difficult to predict.
There are two different seizure manifestations that Allie has:
  1. non-epileptic startle seizures 
  2. epileptic seizure events 
The non-epileptic startle seizures used to morph into full-blown epileptic events (not to be confused with a grand mal seizure which Allie has never had). The full-blown seizure is one that is preceded with a terrifying shout followed by her head involuntarily turning to the left. She stops breathing and her eyes bulge. Her muscles contract violently causing her arms, hips and knees to jerk and extend perpendicular to her trunk. This lasts from 50 to 70 seconds which is a long time when you’re watching your child not breathe. Then the seizure releases its grip and she starts to breathe and relax her arms and legs.

We learned that with many of these startle prompted seizures we were able to intercede talk her down. But, every once in a while with no warning, she goes directly into an epileptic seizure and all we can do is watch helplessly.

Where we are now is we can count on her to have at least one startle event a day, but two is more the average and about five full epileptic seizures a month. The epileptic seizures used to take place about thirty times a month but that number has come way down in the past year and a half.

Our concern lately is that while the epileptic seizures happen less frequently, and the two categories of seizure are much more distinct from each other, they are both much more intense when they occur. That is why we were at Miami Children’s Hospital today.

We’ve logged occurrences carefully over the years and provided our data, along with video, to our doctors. In our own environment at home her seizures are like Old Faithful; we can set our watches to them. But when we take Allie to the hospital so we can record these events with a video EEG, she doesn’t cooperate. We know what sets her off at home, but when we reproduce known offending stimuli at the hospital, Allie thinks we’re playing a game. She thinks she’s at camp.

That’s how tough this kid is. She is so determined to be happy and have fun, that her damaged little neural network is overridden when she’s out of her normal environment. It’s frustrating when we’re trying to learn something. She’s like any other kid when you take her out of the house; she thinks the rules are different and she acts out accordingly.

Or maybe she’s trying to teach us all something different about what’s going on with her and we’re missing what that different something is. He who has ears to hear, let him hear.

Parenting is a never ending adventure. If you have kids, this is not news — even if your kids have moved out. Or moved back in. So much more can be said about that but we’ll save that for another time.

Today, I put pictures and posts on my social media accounts, and the Charming and Beautiful Susan and I appreciate so much those that left encouraging comments and pledges of prayer. We’re so glad to have you guys with us on this journey. There is no way we could do this by ourselves.

Wednesday, October 22, 2014

Book Review: How God Became King



Book title: How God Became King
Author: Tom Wright
Publishing information (place, publisher, year): New York, HarperCollins, 2012
Number of pages: 278

When we talk about Jesus we leave out most of the story. We talk about the virgin birth. We mention that he had a ministry that lasted three years (but that isn’t really essential in most of our conversations). We talk about his death on a cross and, of course, the resurrection. He went to heaven and is coming back.

There you go. That’s all you really need to know to believe the right stuff and go to heaven. Is there anything else we need to talk about?

“Matthew, Mark, Luke and John all seem to think it’s hugely important that they tell us a great deal about what Jesus did between the time of his birth and the time of his death,” writes author Tom Wright. So much of what we believe and shape our thought about Jesus are creeds. “The gospels were all about God becoming king, but creeds are focused on Jesus being God.”

This book focuses on Jesus inaugurating God’s kingdom. The public ministry of Jesus is told through four different narratives by four different voices all telling about the glory of God revealed in Jesus.

“When the church leaves out bits of its core teaching, it will inevitably overinflate other bits of it core teaching,” Wright says. How that plays out in practice and teaching is “churchgoers treat the gospels as the optional chips and dip” to snack on before a big plate of steak, potatoes and Pauline theology are served up. It’s as if the only nourishment a growing boy needs is a healthy diet of Paul. Our appetite for Jesus has been spoiled.

Here are some of of Wright’s main points:
  • Don’t look for theories about Jesus, pay attention to the story!
  • Live in the story of Jesus and allow it to shift the ground you’re standing on.
  • The church’s life and mission need to be rooted in the historical accomplishments of Jesus.
  • The gospels are far from “ordinary”.

Wright, as usual, makes a compelling argument. His style is respectful and tactful and forces the reader to think about the implications of Jesus being king here and now rather than some day way off in a hard-to-imagine future. He argues that we’ve mis-read the gospels. But even worse, we’ve made them “ordinary.”  That’s a trap that results in living an ordinary life. And that is a long way from what God intends for us as his image bearers.

This is definitely a book I’d recommend. Wright writes for audiences that range from academic to common (like me). This book is great for the regular church grower seeking to take their understanding of the mission of Jesus and the church to a deeper level. Wright helps you imagine that you can really live the life Jesus intended for you to live.

Sunday, October 19, 2014

Lift 'em up

I felt like my heart was going to burst. The Charming and Beautiful Susan and I spent time with Allie running around in our breeze way and side walk adjacent to our apartment. Allie grins and laughs and shrieks with joy. I don't really know what to do with my emotions so I just boss her around. "Lift 'em up, lift 'em up!" I shout in my nicest drill instructor voice.

What you'll see in the video below is this kid running around in a Pacer 502 gait trainer by Rifton. Allie needs coaching to help her focus on the job. She likes to just chill on the weekends but if I have to work, she has to work.

She has one of these rigs at school, too, and I'm pretty sure she's more responsive to her teachers and physical therapists than she is to mom and dad.

Kids are kids.