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Monday, November 03, 2014


I've been at work again on the book I've been working on for the past five years. Starting and stopping, getting momentum and losing it has been a discouraging process. I haven't wanted to say anything because it's been really difficult to carve out the time. But for the past two weeks, I've worked every day on it. Here's a piece I wrote this morning (I probably won't blog too much more about it til I'm done) that evoked some emotion as I read it outloud toe the Charming and Beautiful Susan.
I checked in with a hospital volunteer and found my way up to the Pediatric Intensive Care Unit (PICU). I was not ready for what I was going to see. Apparatus on shiny chrome stands surrounded Allie like a crude protective fence. She was in a hospital bed that looked much too large for her. Her head was completely wrapped, turban like, in gauze to hold the electroencephalography (EEG) nodes glued to her scalp in place. She lay under a heating lamp with feeding tubes in her nose, breathing tubes in her mouth, and intravenous (IV) lines running from her little hands to a bag on a stand. A little cube shaped machine on a pole pumped liquid nutrition into her stomach through the tube threaded through a nostril. On one side of Allie was a machine that monitored her temperature, blood pressure, pulse, and respiratory rate. Next to the machine that monitored her vitals, the heating lamp stood to keep Allie’s temperature at 98.6. Allie’s little body was not maintaining the proper temperature on it’s own. On the other side of Allie was the EEG monitor. Finally, there was a machine that pumped air into Allie’s lungs. She hadn’t breathed on her own in over 36 hours.
“Here, I am, honey,” I said. “Papa’s here.”

When broken won't break

Friday, October 24, 2014

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.

Book Review: How God Became King

Wednesday, October 22, 2014



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.

Lift 'em up

Sunday, October 19, 2014

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.

Happy Birthday, Baby

Wednesday, August 06, 2014

Is this cheating? I posted the following in honor of the Charming and Beautiful Susan's birthday. But as I read through it, I don't think I can top it.

Truly, this is the most amazing woman I know. She is the greatest mom, wife, and friend in the world. She has rescued me in so many ways.

 three-of-us
"Your soul-mate doesn't exist. You don't find a soul-mate. You become soul-mates." That's the opinion of the Charming and Beautiful Susan, the woman that has become my soul-mate. Tomorrow, August 7, is her birthday.

I've known this woman for most of my life. More than half of it, anyway. We married before I was 21 years old. I don't know how to properly express how blessed I am to be with this woman.
She's a heroic woman. All she does is take care of other people. She takes care of Allie, our handicapped daughter. She takes care of me. She takes care of her sister who is losing her sight and can no longer drive. That's Susan's life. She constantly gives herself away and pours herself out for others. Susan is too busy to complain, and she wouldn't anyway. She's the most fulfilled person I know.

If you've followed our story at all [learn more here], you know that Susan has a huge heart. When Allie was hospitalized, Susan had one mission: take care of this little girl no matter what the cost. There was no discussion. We both knew that we were going to do whatever it took to take care of Allie. We were going to bring her home. It was my intention when I first got onto a plane headed for San Francisco where Allie was so tragically hurt, that I was going to bring Allie back home to Florida. Susan had boarded a plane with her one carry-on to join me a week later with the intention of bringing Allie home. We didn't know that it would be two years before the state of California would legally release Allie into our care and come back to Florida.

While we were figuring out our new life with a severely handicapped child on our hands, I was not a fun person to be around. I allowed myself to become bitter, biting. I was cynical and condescending in conversations, always taking the opposite side in an argument. I found it difficult to value others.
But the Charming and Beautiful Susan exudes grace. I can't think of anyone I'd rather partner up with and do this life with. God has used her in my life to tame me and shape me into a human being.
There's a reason we take vows when we get married. There has to be something stronger than mere words and romantic feelings. They both fade shortly after the wedding. Life is hard. For some reason we think a day will arrive when we get to coast. But that day never comes. But you can live wisely and satisfied with someone you can give yourself away to. That lightens the load, but nobody gets to live on Easy Street. That's why God sends each of us a helper - someone to do life with. You become soul-mates with that person.

I can't imagine doing life with anyone other than Susan.

Happy birthday, baby. I'm going to do my best to make this the best year you've ever had.

Book Review: Healing is a Choice: Ten Decisions That will Transform Your Life & Ten Lies That Can Prevent You from Making Them

Tuesday, August 05, 2014

Author: Stephen Arterburn
Nashville, Thomas Nelson, 2011
Number of pages: 480

“Creator of the universe is also the Healer of His universe. He is the ultimate decision maker as to how, when, and from whom we receive healing.” In the introduction of this book, author Stephen Arterburn gets right to the point with both the topic of the book and the source of the healing we are all so desparately in need of.

Arterburn points out that just like all the properties for physical healing are built into us by our Creator, so are the properties for the healing of our souls. But the choice to engage with the healing is our decision and often not an easy one to make.

No one can make you get healed. You have to want it. The fact that you're going to have to learn how to make it happen does not put healing out of reach. God will partner with you to see it through.

Arterburn looks back over the years he went through after a painful divorce to help the reader understand that his experience isn't simply academic. His experience is real and raw. He walked through a “decade of pain, insecurity, and loss.” It's from this process that he wants to help others find a future.

What Arterburn learned about healing from the pain of divorce was that he had to make a choice to forgive. The choice to forgive is not limited to a one time event, the choice to forgive presents itself over and over again.

Healing happens as a series of choices and that's how Arterburn lays out his book.
  1. The choice to connect your life
  2. The choice to feel your life
  3. The choice to investigate your life in search of truth
  4. The choice to heal your future
  5. The choice to help your life
  6. The choice to embrace your life
  7. The choice to forgive
  8. The choice to risk your life
  9. The choice to serve
  10. The choice to persevere
Each of the ten chapters names a lie determined to sabotage the work that needs to be done in your life and your relationships. Each chapter includes workbook questions to get you thinking about, writing down, and“[moving] you along [to] help you experience whatever healing God allows for your life.”

Throughout the book, Arterburn makes a strong argument without arguing. He is both a teacher and a cheerleader helping the reader gain perspective and see new possibilities for his life.

While Arterburn emphasizes our spiritual building blocks, solutions he offers are accessible, applicable, and bring value to repaired connections and hope for a future of sustainable relationships.

Personally, choosing to live in community has been the biggest challenge for me and the most important takeaway from the book. I need to quit thinking I can muscle my way through the challenges and roadblocks life throws up on my own. Seek to connect rather than correct. But, for a non-diplomatic, fight-about-the-details guy like me, that's a massive effort.

Reading and reviewing this book has been timely for me. It comes during a season when events in both my spiritual and professional life have inflicted personal pain and disappointment on me as well as many I am in community with. I definitely recommend this book for anyone in a similar season or someone carrying the heavy burdens of past broken relationships. I think that covers just about all of us. Get the book.

Book review: Pastrix - The Cranky, Beautiful Faith of a Sinner & Saint

Friday, June 13, 2014

Book title:
Pastrix: The Cranky, Beautiful Faith of a Sinner & Saint

Author:
Nadia Bolz-Weber

Publishing information (place, publisher, year):
New York, Jericho Books, 2013

224 pages

This is the most doctrinally un-orthodox book I've ever enjoyed.

It taught me that I'm not supposed to trust another person's faith or apparent "walk with Christ" more than my own.

Does that sound arrogant? Too bad. It isn't. If you haven't learned that lesson yet, you probably won't enjoy this book very much. And, warning: there are some hard lessons in store for you. It's time to wake up.

Nadia Bolz-Weber is the pastor of a Lutheran congregation in Denver called House for All Sinners and Saints. Her book is a memoir of a very unorthodox female pastor's story of ministry to a group of marginalized people that would typically not be welcomed "just as they are" at your church. I'm pretty sure they wouldn't.

Personally, I find myself in a cycle where I'm questioning my faith as well as the framework of faith that has nurtured it. This book made me question it even further but it also challenged me to love God and love people more than I currently do. So where does that leave my faith? I wish I knew. Strengthened I think. It's refreshing when a book strengthens your faith in an insightfully unorthodox way. I'm pretty sure that's what Jesus' modus operandi.

I haven't enjoyed a memoir as much as I enjoyed this one in years. (Watch your back Donald Miller.) Since I've invoked Donald Miller's name, I should say that if the author of Blue Like Jazz was a breath of fresh air for you, you'll enjoy this book, too. But beware; there is some adult language peppered through out. The author's self-effacing crankiness was not filtered out by the editting process. Praise the Lord for that.

Also, if you like Anne Lamott's writing, you'll dig, Pastrix. The writing is clear and compassionate and punches you in the face and comes straight from the heart of a pastor.
 

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