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When I looked Down

When I looked down, he was dead.

It was supposed to be a trip I would never forget; it was a trip I will never forget. We left the small town of Bay St Louis when I was 13. My dad was going to speak for the 40th anniversary of the church he started. My mom was traveling too, on another flight the next day. Unbeknownst to them, my brother and I were working out a surprise. He was driving an RV across the country with his wife and kids and as fate would have it, I was attending a trade show the same weekend in the same area. I moved my flight up a few days so I would be there on the same days as my dad. My family would all be together at the same time in our old hometown; a treasure beyond comprehension.

Can you believe I was on the same airlines with the same connecting flights as my dad; what are the odds?

The morning started as planned. I arrived at the airport having carefully kept my travel plans secret. I started recording the video as I walked up behind him, walking slow, struggling with his suitcase. I tapped him on the shoulder, and he was surprised, thrilled and then… relieved. Surprised because it was so unexpected. Thrilled as it dawned on him that I would be traveling with him to our old hometown. Relieved, because he would now have help to change gates in Chicago; O’hare can be difficult to navigate and he would lose his breath so easily. He checked his bag and we talked as we went through the various security and border crossing checkpoints. The flight was full and there were no seats together for the first leg of the flight, but we secured seats for the second leg; we would be together in Chicago.

The flight from home was mundane. I got some rest; I read some. We landed in O’hare with a bit of time to change planes, but not a lot. I was high on excitement and expectation. He was so glad for the trip and the turn of events, but sore from the trip. His knee was acting up. We found a porter with a wheel chair to spare and we made the trip to gate H4 with time to spare. We passed a food court on the way; a burrito place stood out. You can tell there’s good food at an airport when the flight crews eat there. Dad was hungry and I was happy to oblige. With my dad resting comfortably and checking his phone for messages, I left him my bags and ran back to see what was so good about those burritos. I ordered one chicken and one steak to go; I would let him choose.

A stranger ran up to me, “The man you are travelling with in the wheelchair doesn’t look well. I think he’s passing out.” “It’s ‘ok’”, I said. “He falls asleep at the drop of a hat. He’s done that all my life.” I’m next to pay. Credit card tap didn’t work. Tried again; same result. Entered the card and typed in my PIN. Third time’s the charm. Another stranger… running, “Come now, they’re doing CPR!”

I ran.

I pushed through the crowd looking at the man that inspired so much of who I am. Head to the side, looking out of touch, mouth was moving like blowing in and out faintly. I inched in beside him and grabbed his hand and yelled, “Dad, are you ok?!?”.

He was dead. The eyes were pointed towards me, but there was no life behind them. The blowing breaths were in time with someone pressing hard, doing CPR. I looked harder into his eyes, as if by will I would make them have life.

Everything in me said I should jump in and help, but this was life-and-death; not metaphorically. I learned CPR in Boy Scouts, but that was 35 years ago. This is not the time to try and remember; I’m sure I don’t remember. These people seemed to have a solid understanding of what they were doing. I found out later that there was an ER doctor, a cardiac nurse, and an EMT that were waiting to catch the same flight. Strangers to each other, they worked as a team. Chest compressions, strong and fast. A voice, “I saw and AED, I’ll go grab that.” Another voice, “Paramedics are on their way; a minute out.”

“Dad, can you hear me? Dad! Ernie! Dad! Squeeze my hand”. Nothing.

A voice, “I’ve got the AED. Pad’s go here and here. Unit’s on and charging.”

Another voice, “Ok everyone, stand back. AED is a go. Its gonna shock him”.

The eyes looked forward and went wide. The body jolted upward from the floor.

“Resuming compressions”

“Dad! Ernie! Dad! Ernie! Ernie! Dad! Ernie!” Nothing.

A few seconds

“Stop for a minute…. AED says he’s good”

“I’ve got a pulse, it’s weak.” Compressions continue.

Another moment. Compressions stop. “He’s breathing on his own”.

“Dad, if you can hear me, squeeze my hand!” The eyes still look lost and unfocused. But the breaths are real.

Squeeze. I breathed… for the first time in minutes.

Paramedics rushed in and went to work. I stood back and took a picture. You can always go back and erase pictures you never want to see again, but you can never go back and take a picture again. It seems morbid or grotesque or dishonoring, but always take a picture if you can. I dialed my mom on speed dial, “Dad’s just had a heart attack, I think. Paramedics are here. They’re taking us to a hospital.” I called my wife.

They put him on a stretcher and lifted him to a cart to descend stairs. Someone handed me his glasses, missing a lens. Someone handed me his small document case and his phone. I didn’t look anyone in the eye. I didn’t thank anyone. I breathed. I tried to focus my thoughts. I can’t focus my thoughts by trying harder; only by calming myself. I’ve learned this through enough crisis.

The ER doctor that used the AED found me on Facebook and asked about my dad. From that, I had his name. When it was all over, exactly the same day that I left Chicago, I ran into the Chief Development Officer for the American College of Emergency Physicians. “There’s someone I need you to thank.” He’s getting a commendation. Hopefully he knows the names of the other two.

Police officer, “Is this your father? Is this his ID? How old is he?” more questions. I did my best to answer, but my mind was blank, flushed with panic and adrenaline. “Yes, Yes, He’s…. 70-something. I can’t remember.” I don’t remember if he was done asking me questions. I followed the paramedics.

I’ve been through my share of negative experiences. I can be calm under pressure, but this was something else. Our bags were heading to New Orleans; I had checked my carry-on at the previous gate, people were driving a distance to pick us up. my mom needed to know details, my wife needed to know enough that she could be there for me. God, I needed my wife; we battle together. Dad was loaded into the back, I started to follow. I was on the tarmac of an international airport; they stopped me and ushered me to the passenger seat of the ambulance. You can’t open the door from the inside. I could talk through a window to the back. “How’s he doing? Is he OK?”. The reply, “He’s stable. He’s OK”.

We proceeded to the hospital, Resurrection Medical Center, an apt name. People aren’t very good at getting out of the way of an ambulance, please respect emergency vehicles. Into the ER, we are met by kind staff. I’m asked to wait outside while they cut away clothes and started their procedures.

“Sir, can you tell me your name? How old are you? Do you have history of heart trouble?”

“Ernie Culley. 72. I had a heart attack 14 years ago.” It occurred to me for the first time, he had been out for some time. He might have lost memory or brain function, but he could answer the questions, address, Social Security Number, age, birth date. My heart skipped a beat and then quickly calmed again; he could have, but he didn’t. “That was a new shirt they cut.” “I’ll get you a new one”; he knew recent details too. Short and long-term memory, OK.

We carried on from there to follow the protocol, oxygen, admitted, close watch overnight, angiogram in the morning revealing 85 to 100% blockage in all coronary arteries. He’ll need open heart surgery, major bypass reconstruction, probably a pacemaker. Surgery booked for Monday, 48 hours later, “He might not make it till then. His heart is very very weak. He’s only alive because his body has tried to grow new vessels around his clogged arteries. It really is a miracle he’s even alive right now.”

I called and gave updates to those that needed to know, and a lot of people needed to know. I didn’t say he might die tonight, or tomorrow. I couldn’t speak those words. Words have power. I have one thing. It makes all the difference, “Father, how will this end? Will he be OK?” I can hear the “Yes. He will be OK.” It’s a simple answer, deep in the depths of my mind, not audible, but there’s a feeling that makes the voice unique. I can’t describe it better, but it’s the same voice that told me my daughter would live through cancer. It’s the same voice that has prepared me for the outcome countless other times, almost always positive, but sometimes preparing me in advance for what is to come. He will be OK!

That doesn’t take away the sleepless nights when the heart monitor starts to go erratic. It doesn’t stop the panic when alarms sound in the night. But it quickly follows the panic, followed by a deep inhale, hold, exhale, hold… box breathing is something I learned calming autistic meltdowns for my sons.

There’s so much emotion going through something like this. Anger, guilt, loss, fear, hope, gratefulness… and everything else, all at the same time, like standing in a garbage dump and smelling a bouquet of different flowers. Sometimes smelling the pleasant, sometimes smelling every variety of offensive, sometimes smelling all together to create a smell that’s not natural or supposed to occur.

I write these words, because I know loss. I write these words, because I know overwhelming pressure. I write these words because I know grief. I write these words because I know hope. I write these words because I know God. I write these words because I know calm in a storm. I write these words because I know that in order to move from here, I have to cope, I have to own the thoughts and feelings, I have to process, I have to compute it all, I have to cry, I have to see it all, I have to share. My life cannot accommodate down-time for battle-earned scars. I embrace this process quickly. There is no weakness in being vulnerable… it is the only strength.

A son should never look down and see his father dead, surrounded by strangers, holding his own breath, thinking everything and nothing. I should not have been there; it’s just not right. But there is no one else that could have been.

Today I sit on a plane heading home, reliving it and processing through words. My dad is alive for the moment, with a long road ahead to rebuild strength and heal wounds. I don’t know what the future holds. In a few hours I will walk through the front door of my house, and I will embrace the living, the loving, and the chaos. I will hug my wife and not let go. I will see all the things my children will share with me; it’s their only way of relating. I will be present for them, but I will not be holding freshly earned scars. They will already be prominently displayed on the mantle of my life with the other tragedies and triumphs that I have earned thus far.

Running with armor

I find the greatest challenge in advocating for my sons with “needs” is finding the words to describe the challenges they are facing so that we can all approach the problem from the same perspective. I’ve tried a number of ways to explain, with various levels of success. If I feel that there are gaps in understanding, I dig deep and try to find another way to explain. I find myself in that position again.

Jeremy is currently acting out in a way that we have never seen before in the last few years at his current school, and the staff at the school seem to be baffled… or at least slightly taken aback by it. Unfortunately, it’s because of stuff we’ve been explaining in one way or another for years.

So I try again.

No idea who this is, but apparently its in crazy hot Phoenix, so kudos to him for the illustration.

My autistic sons have social decoding deficits, which means that they can’t read your body language or tone and get any kind of predicted meaning. They might try to read you, but without significant effort at relationship building, they are often wrong. When we have a conversation, we can “read” the current disposition of our audience, and we can generally tell if it’s a good time for the conversation, if our message will be received and because of that we can predict the possible responses from our audience before we even say the first word. My sons can’t do that.

Imagine loving humor and wanting to be funny and you see an audience that is prime for a good joke and you tell one that has been well received in the past, and instead of laughing, your audience starts punching and kicking you. Some times the joke is well received and some times you get kicked and punched. You would very quickly start to either avoid those jokes, or like in my boys’ case, you would approach the joke with a certain amount of fear. For the sake of my analogy later, let’s say that every time the outcome of the conversation is bad, that’s like getting hit with a rock. Let’s define getting hit with a rock as getting “unexpected reactions to social interactions with significant consequences”. For example, a friend not “getting you” is not as significant a consequence as a teacher reacting badly because they didn’t understand you.

Here’s a more practical example. Jeremy has a written output disability and major verbal processing deficits, which means there could be amazing things happening and computing in his brain, but in conversations or written output that require problem solving, it requires a TREMENDOUS amount of effort. So imagine that there is a problem in a class, like needing help with a question. Jeremy has to use all the effort that he can muster to awkwardly ask for some help… expecting the teacher to offer help in-line with the complex computing that is happening in his brain. He might actually use words that come across blunt, or seem rude, or overly simple, but he’s fighting through his disability to just ask the question. Remember that he can’t read social cues, so he might ask at a bad time, or when the teacher or SEA is obviously preoccupied with something else. Regardless, he’s expecting the help to be helpful and respectful. Instead he gets hit with a rock. He might get talked down to, or scolded for sounding rude, or the answer might be completely different from what he was asking. All rocks.

Facing this day after day, week after week, year after year is trauma. It is heartbreakingly difficult. And the result is that my boys go to school with armor on. They are knights, who don their steel exterior and bravely go off to the uncertain world of school. Some days they get hit with rocks… some days they don’t.

What they need is something or someone that says, “I get you. I understand. You are safe.” They need the trust that it is ok to take off the armor. If the armor could come off, they could divert that energy to the challenges in front of them, rather than bracing themselves for the fights that may or may not happen on any given day.

Right now, my sons line up every day to run their race. They line up mostly with kids that are not wearing armor, and a few that also have armor. The weird and twisted part of this race is that the kids that run the slowest will have rocks thrown at them. It’s a catch 22. If they take off the armor and run at full speed, they will avoid the rocks. But if they are convinced that they are going to get hit with rocks (unexpected reactions to social interactions with significant consequences), then keeping the armor on is the only logical option.

We were recently introduced to Self-Reg by Stuart Shanker. Great Book! It explains a lot about both of my boys. The over-simplified generalized synopsis is that there is a finite amount of energy that can be used for various mental tasks. If there is anxiety (armor), then the energy used to deal with that is stolen from other mental faculties. In order to be successful in those areas, you first need to self-regulate and bring the anxiety back down (take the armor off), and then you will have more energy for everything else (you can run faster when you are not carrying the extra weight of armor).

Some practical examples:
My boys can explain things, even complex or uncomfortable things really well if they are calm, but not if they are being yelled at, or talked to harshly.
My boys can deal with difficult tasks and perform very well academically, but not when there is stressful time pressure.
My boys can show tremendous understanding and comprehension when they can verbally recite it or even type, but not when they have to write by hand, or are scared that they will lose marks for punctuation.

I was recently told that Jermey didn’t follow a direction that was given when he was “calm”. This is a misunderstanding about a lot of people with autism. They don’t understand or decode social cues, so they don’t know what normal facial expressions are. So, he wears expressions like clothing… like a mask. Based on his diagnosis, he’s always a little anxious. When he’s being scrutinized by people that he doesn’t know “get him”, he will be very anxious. When he is that anxious, he has a hard time decoding things like basic instructions. It’s not like it’s a lost cause… it would just take a few prompts or reminders. If he knew that he was safe to mess up and would get a few reminders, then… and only then… would he actually be more calm, oddly enough, that would result in not needing prompts.

Jeremy had things go very badly because of this type of problem, that ultimately resulted in him being so misunderstood that he was traumatically dismissed from the famed Harrison Hike. He feels very traumatized and as a result has doubled up on his “armor”. He doesn’t feel safe. Not because the teachers are mean or have anything against him. He just cannot predict how any interaction will go, and through the thicker armor he is misinterpreting what is happening around him, which makes the situation worse… far far worse. He is terrified to go to school and he is terrified to miss school and perform badly.

It’s not a coincidence that the people at Jeremy’s new job are really laid back and chill, and that they can’t detect any discernable signs of any handicap. I’m sure he’s a little awkward, and might require direct instructions instead of “hints” to do things, but because they default to calm, it’s not an issue.

We are advocating for a specific assigned SEA (Special Education Assistant) for next year that will provide Jeremy with, among other things, a consistent liaison to help with this type of communication. He doesn’t need a babysitter… he’s quite a capable young man. He just needs to know that it will be safe to try to communicate and he can take his armor off. And that if communication goes badly, he doesn’t need to put armor back on, he can have the help to clarify. It needs to be a specific SEA that can connect with him and that can “get him” and build relationship with him.

This is not how the school has assigned SEAs up to this point, but its what he desperately needs.

My son had a seizure

When I was 11 or 12 years old, I went to stay at a family friends house and they had a daughter about my age. We woke up early in the morning and started playing a board game. About halfway through the game I was winning and the girl knocked all the pieces off the board, and I considered that very unsportsmanlike. But she kept wiping the board off and she was lying on her side and her eyes were rolled back in her head, and for the first time in my life, I was watching an epileptic seizure. It was slightly terrifying, but her father came and supported her head and spoke soothing words and rubbed her body in a calming way, and soon enough she was back. She was tired after the episode, and laid down for a while, and the rest of the visit was quite normal.

Yesterday, we were going out to celebrate an important milestone for one of my daughters by having ice cream for dinner. This is by far the most favorite meal for my son, Josiah. If he can get his hands on a bucket of ice cream, he will consume all of it in one sitting, which is sometimes handy because he doesn’t consume enough calories most of the time.

The night before last, we stayed in a hotel and Josiah had trouble settling and only got about 4 hours of sleep. He also got a pair of hand-me-down roller blades yesterday and he was excited about those. At the point that we were trying to go get ice cream with my daughter, he started to head out and roller blade. This collision of thoughts and desires coupled with a lack of sleep was enough to knock him in to an autistic meltdown.

Above is a picture of him sitting on the sidewalk, stuck. I got out of the van with the other family members and sent them on their way, and I just sat with him there on the sidewalk. He desperately wanted to roller blade. He desperately wanted to go get ice cream. In that moment he was unable to switch the mental gears and was stuck. What came out of his mouth, was yelling, “I don’t want to get in the van; it’s boring! There’s nothing to do in there!”. Yelling that over and over and over at me, his father, on the sidewalk.

Josiah has been having trouble at school. The comments we get back are about how he is being defiant, and stubborn, and on one hand I cannot fathom how someone could view this precious, loving, wanting to please, little autistic boy as defiant or “non-compliant”. On the other hand, I totally get what it “looks like”. As his parents, we struggle so hard trying to figure out how to advocate and educate about what is going on.

After sitting there for quite some time, he began to be able to say a few things that were really bugging him about it all, and even then, it was barely related to the actual problem. He was finally able to start to think about it all, and then he broke down in tears… “Dad… I’m really sorry I made everyone sad… I don’t know why I get stuck.” That’s where my heart breaks. In the core of his heart, he cares about others and he knows that his episode messed up the family plan. And HE KNOWS!!! HE KNOWS THAT HE’S STUCK!!! But in the moment, he… just… can’t… break… free!!!

I went to bed with that on my mind and I woke up this morning with the image of that board game 30 years ago, and the scene of that epileptic seizure. It hit me, that what I want for Josiah is for the people around him to understand that his mental lock-downs are very similar to a seizure, and that the needed intervention should be similar as well.

His mind is a race car that runs full throttle, but he’s only got racing slick tires on. No matter what is going on in a class, he’s always farther down the road than you think… but he’s really bad on the corners. If he isn’t prepared for a corner coming up, he’s going to slide off the road. You can keep him on the road with giving him a map of the track, so he knows when the corners are coming up, but if that gets missed and he slides off the road there are a few things from the epileptic analogy that will help.

  1. It’s not an inconvenience. It’s a medical problem that requires intervention and if you have to call someone to the classroom to come help, then do that, because leaving an epileptic seizing on the floor would not be acceptable, and neither is leaving my son in that place for any length of time.
  2. It’s not a choice. No matter what is coming out of his mouth, if the responses to your words are not cohesive and reasoned, then he is stuck and he can’t help it. You would never discipline a child for having a seizure, and you should never discipline or tell my son that he is a disappointment because his outward expression went off script.
  3. Something set him off and only peace can bring him back. For epileptics, it could be flashing lights or unexpected noises or too much stimulation, but something sets off the seizure. More flashing lights, and more abrasive noise is not going to help then calm and settle. For my son, something, maybe something that’s hard to discern, but something unexpected happened or is about to happen and he feels out of control and his brain has hit a panic button and set him off. No amount of threatening, or scolding, or explaining, or even physically trying to move him, or acting frustrated is going to bring him back. Only, when you can sit with him and tell him that it’s going to be ok, and calmly touch his arm, and tell him that you know it’s hard, will he be able to feel peace around him and start to open up.
  4. It’s a heavy weight to carry. When all is said and done, and things settle down, he knows what happened. He knows that his meltdown affected those around him. He feels bad about it, and he desperately wants to find a way to stop it happening, but he can’t. When my friend at 11 years old came to, she apologized. I felt bad for her and I felt a little bit awkward like I had seen something that was deeply intimate and difficult, but I certainly didn’t blame her; I felt bad for her. If a teacher or SEA is working with my son, he should not end up feeling shame… under any circumstances.
  5. He wants to participate. He’s terrified that something that set him off before will set him off again. He’s scared that people who unexpectedly got mad at him before will get mad at him again. If an epileptic was sensitive to unexpected noises and there was an experiment in class that might make a “bang”, it might help to pull them aside and tell them that what’s coming so they could be prepared. In the same way, if people come around him and make him feel safe, and he gets some information about what turns are coming up and he feels in control of his environment, he really wants to paint and make music and share with his peers.

It’s tough advocating for a child with a hidden disability. It’s heartbreaking. I cling to the hope that some way of explaining things will make a difference. Hopefully this helps… If not, I will keep trying, because my son will understand one thing… He’s worth it.

The US Election – 2016 style

My daughter asked me to write about the US election and my thoughts on the politics. I think she secretly wants me to have no friends, because I’m pretty sure my thoughts would alienate everyone. I tried starting this post a handful of times and there are several drafts that will never see the light of day. The topic is difficult, not because the party platforms are that hard to understand, but because almost everyone seems ready to pounce on any thread that doesn’t support their view… like it’s everyone’s personal job to clean up their social media thread so that all opinions expressed on your wall are “correct” – whatever each person views as correct.

Voters waiting to vote in polling place

So, I’m going to skip that part and talk directly to you, dear daughters. Not that long ago, democracy became a thing. The idea that people could each have a say in who would govern is a novel concept that hasn’t existed for most of the 10,000+ years of the civilized human experience. But there’s a catch. This voting thing requires wisdom and an investment of time; time to learn what ideas each candidate supports, and time to debate and consider how those ideas will play out in the long run. So, I am going to give you some pointers that will help you be good voters.

1) Understand the role of government.
A democratic government is there to manage things; a democratic government never creates. In order for a government to “make” something, they require money from somewhere, and the only tool that government has to get money, is taxes. If a government ever talks about creating jobs or making a better healthcare system or anything else, it’s either talking about managing the economic environment so that those things are possible, or they are making promises that they are going to have to spend to create, and spending means taxes. That’s not always bad, but it needs to be understood… government manages, not creates.

Government needs to manage the laws we live by, the taxes they require, the security of the borders, the relationships that we have with other countries, the infrastructure (roads and electrical power plants, etc) that make everything work together, the environment, the policies about money that help promote profitable trade (making your paycheck worth something), policies around healthcare and making sure it’s reasonably fair to access, the environment, and most importantly, it needs to make sure that everything is fair, so that an honest person, giving an honest effort, has a chance to succeed.

It’s wildly complex and things are often out of balance. Sometimes the environment gets ignored while securing the borders receives too much attention. Then a new leader needs to get elected that will steer things back to balance… but then the environment might get too much attention and monetary policy might suffer. You always need to try to be aware of where things are at and do your best to understand what needs attention and what is out of balance.

2) Consider all sides.
The US system is really a 2 party system, but Canada, being much more inclusive, is a multi-party system. No matter how many candidates there are, they all have a published document somewhere that spells out what’s most important to them (called party platforms). Read them. I know it’s tediously boring, but this is the job. The alternative is to live under tyranny of one sort or another.

When you read these party platforms, make a list, a mental list or an actual list, of what points they each talk about. Then ask, “Why did Party A talk about these points and Party B didn’t mention them at all?” When they do talk about the same points, which way of dealing with things seems to make the most sense? Who seems to be addressing the issues that are out of balance (see point 1)?

3) There is nothing new under the sun.
“There is nothing new under the sun”. When running a campaign, often people are unhappy because they feel like things are out of balance (see point 1) and they want “change”. Nobody ever seems to think that the way to fix things is to do them the old way, so politicians talk about doing things “new”. But if you look closely, whatever challenges we face have been faced countless times before. And they have been faced in many different ways before. And sometimes they are handled successfully and sometimes it’s complete failure.

For example, there is talk of raising taxes on the rich. It’s been considered before. It’s been done before. What was the outcome? The history and analysis is easy enough to find. Based on what you find, is it a good idea or a bad idea? But you can count on this, there is nothing new under the sun. Whatever happened the last time, will happen this time.

To this end, it really pays to take a little education that you probably didn’t get in high school. This article has some good stuff to say about books to read and thoughts on getting educated (https://www.facebook.com/TheRealMikeRowe/posts/1254500967893377).

Feel free to use the media for some of this info, but understand that “news” stations are out to make a profit and so they need a consistent audience. This means that they have to say things that “attract” their audience. Actual information is edited or “spun” or omitted so as not to offend the loyal audience, so by nature of the current system, it’s biased. Don’t blame the media, they are doing their job. Just understand that for every news source that is attracting the people that would vote for Party A, there is a news outlet that is attracting the people that would vote for Party B. As infuriating as it is, listen to them all. When it comes to being educated to vote, this is the job.

4) Put the country first.
A lot of politicians get elected promising things to you, personally. You’ll get more money from the government (which were taken from taxes, see point 1). You’ll get free education. You’ll get free healthcare. You’ll get your own llama. Whatever they are promising, don’t go to the voting booth being selfish. Go to the voting booth to keep things in balance, for the long-term good of the country. If the government gives everyone free money, it will seem amazing for a moment… but too much money in circulation will create inflation. Inflation will make it so that all that money put together won’t buy a loaf of bread.

I have special needs boys and it might seem good to vote for the candidate that promises the best in special education. But if that comes at the cost of our economy, and my boys grow up to a country living in destitute poverty, then did I really serve their needs in the long-run???

I’ve told the story before of fathers that left their homes to build a railroad so that their children would have a better future. Most of those fathers never returned home, and died for their cause. As awful and sacrificial as that might seem… the continent did quickly benefit from the generosity and did become quite prosperous for their children. You probably don’t ever have to consider that level of sacrifice, but you do need to have that kind of thinking when you vote.

5) Demonstrate your values.
After you’ve looked at all the options and decided who you want to vote for, feel free to engage in conversation about it. If you try to have that conversation on social media, it will seem like the world has gone mad… it hasn’t. But if you believe that everyone should have the right to free speech, then let others speak freely. If you believe that everyone should be treated with respect, then treat everyone with respect.

In every area, don’t wait for a politician to make the difference you want to see. If you think good monetary policy is important, then manage your money properly. If you think that there needs to be better security of our borders, then support, encourage and thank people doing that job… maybe even sign up to serve. If you see that there is a need to help the poorer in our community, for sure make that something to consider when you vote, but get out there and help the poor.

In the end, it’s all about how our society is moving forward. You will get shouted down a lot when you try to discuss this stuff. But your actions will never get shouted down. And maybe, just maybe, someone will follow your example and the world will be a better place after all.

This is my story (The lady at the bakery)

These stories aren’t all chronological, and some aren’t even really that old. I guess the things that make you who you are, can either be the early life experiences that formed your initial thoughts, or sometimes the incidents that hit you hard enough to rethink ideas that you’ve held for a lifetime. This story is one that impacted me greatly, but only happened about 8 years ago.
Bakery Case

The Lady at the Bakery

When we lived in Abbotsford, BC, an amazing person, named Pam Dyck, put on a class in her home to teach about prophecy… the ability to hear a message from God and give it to someone else. And I decided to take this class.

I’d grown up surrounded by prophetic stuff. I know people that can tell you details about your life and thoughts that… only God would know. I know people that can tell you what is going to happen in the future with details and startling accuracy. I even had some experiences of my own, where without really thinking about my words in advance, I blurted something out, about events that would happen in the future… and they happened… exactly as I had stated. I guess I never really thought about it, but all of my experiences with prophetic stuff was inside the church.

In this home class, we spent a few weeks learning about different aspects of how you can hear from God and the significance of colors and interpreting metaphors and even rules… like never tell a couple that they are going to get married… or have a child. The last class involved going out to some public place and giving a “word from God” to a random stranger. So we all climbed into a few cars and headed out to public places, and our car went to a mall.

I walked around the inside of the mall asking God who He wanted me to give a word to and after a bit I passed a bakery, and I really felt like I was supposed to go in there and give a word to the lady that was working there… and so I kept walking. I walked back and forth a few times, trying to muster up the courage. And then I asked God what He wanted me to tell her and all I got was “I love you”. I asked a hundred times and all I ever got was “I love you”. Really?!? In the world of Spiritual super powers, that’s about as basic and elementary as it can get.

Anyway, it was getting late and everyone else in my car was wrapping up and I needed to put up or shut up, so I walked into the bakery and then stood there silent because I hadn’t figured out yet how I was going to introduce what I was going to say. I finally, awkwardly, fumbled my way through telling this lady that I was doing an exercise for a class and that God wanted me to give her a message and that message is “I love you!”

She stared at me, and then cried.

Here’s her story… She believed in God and for the last 20 years had lived common-law with her male companion. The common-law husband had been raised Christian and he also believed in God, and Jesus and the whole Bible thing, but they had just never gotten married. His side of the family was very religious and the only person that had ever accepted her was the common-law husband’s mother. The mother had just died and they were having a funeral, and the very religious family said they didn’t want this lady to come because they “were living in sin”. She was devastated that she couldn’t be at the funeral, and extremely hurt that she had been rejected by these people and she was right then, in the bakery, closing for the night, contemplating whether or not she could even believe in God.

At that moment, I walked up and said that God wanted me to give her a message and that message is “I love you!”

The significance hit me as I was driving away. Here is a woman that doesn’t go to church, has been rejected by what she believes is “the church”, and other than me right then, had no way of having God tell her that He was standing with her in the pain. By taking a class, with a premeditated structured assignment, where I had to go find someone to say something to, I became available to make a huge impact in her life. And at the same time to clearly demonstrate that this judgemental religious side of the family was not “the church” and that their judgemental words were not from God.

I learned a couple things that night. The first is that being available to God is a choice and not some feeling that comes over you… and when you make that choice, He will make a difference through you… in ways that will impact you as much as the people you touch.

The second thing that I learned was that God has a lot that He wants to do outside the church building. The hardest part of the exercise was realizing that God had something to say to just about everyone in the mall, and narrowing it down to one person became the challenge. The Bible, in the book of Ezekiel, talks about a river. Its supposed to represent the things that flow out from God, and a lot of people think that its a place of being with God in a church service or in personal devotional time or something. The reality of that passage (Ezekiel 47) is that the farther out the river goes, the deeper it gets. If you ever really want to see God do cool things in your life or make a difference in someone’s life, then get out of the safety of a structured church environment and go do God things where people live.

Anyway, this story has impacted how I treat everyone I have met, from that day to this.

This is my story (songs in the night)

Its an interesting journey at 40-something to think back to the significant things that impacted who you were growing up. My hope with this series of posts is that my kids will see a bit of what made me, and by extension, what their heritage is. And I want to write it down, because its easy to forget to share this stuff. After the last post, I’ve spent a lot of time thinking about stories that I can remember and what had the biggest impact on me. Today I want to share about a series of memories that were a common theme in my childhood.

Songs in the night

When my girls where young and I was getting them settled for bed, I would sing. I would sing the first songs that came to mind:

He is my peace, that has broken down every wall
Jesus, Jesus, Jesus, there’s just something about that name
Majesty, worship His Majesty
In moments like these, I lift up my hands

These are  old church choruses and the reason that they were the first songs to come to mind at bedtime, is because they are the songs that I went to sleep to… hundreds of times.

When I was in 2nd grade, my parents worked for a church in New Orleans, LA. My dad taught in their Bible college and ran a printing press for them (it used to be the only way to mass produce flyers and bulletins and such, to run a full sized, plate and ink printing press), and my mom did the graphic design and layout work for the printing press. Then on Wednesdays we would pack up and take our school work with us and drive to Bay St. Louis, MS, where my parents were starting a Church.

I don’t remember much about what we did then, but I know that we had a place at the Walnut Grove apartment complex in New Orleans for half the week and we rented a house in Bay St. Louis, I think on Melody Lane, for the other half of the week. I also remember sitting in the back of a home or two, some that smelled of sulfur and too many people and slightly past my bedtime, and falling asleep while the meeting was going on.  My dad was pretty much a one man show. He sang and spoke and did everything.  What I remember most is going to sleep to the sound of a man singing songs that gripped my heart.

When my dad lead that group of people in singing, he played guitar and sang songs that were simple enough that you didn’t really need words printed out to follow.  He would close his eyes and sing these songs, to God; not like a religious figure from long ago or following some liturgical pattern, but like God was right there in the room, and like when he closed his eyes it was just him and God, and he sang like that might be his last moment to share with this God all the love and adoration and respect that he had… and he had a lot.

Thinking back, I remember many times like that.  I remember going to sleep in a dark room and a wood-slat floor with my mom sitting beside me and my brother while my dad was in the next room singing and talking, some in English and some in Indonesian; I would have been 3 or 4. I can still remember some words to some simple Indonesian songs that I learned listening, while I fell asleep. And though the language wasn’t his strong suit, it was the same passion and intensity and honesty.

And then he would reach that point in the singing where he would keep playing his guitar and he would make up a song right there. He had taught everyone in the home meeting about this type of worship and so all at once, the group would go from singing one song together, to singing 30 or 40 songs at the same time, and they would all get loud.

I don’t think my dad ever gave a second thought in those moments to his two young sons laying down in the back of the room, but nothing could have had a bigger impact on me than to feel the reality of God in a room while 30+ people shouted words of love and adoration, that should have sounded like chaos, but instead had the most amazing harmony and unity.

At 7 or 8 years old, I had no idea how rare these moments would be. Throughout my life I have rarely encountered anyone that would sing with the emotion that my dad does. But this is the foundation that I had to build on.  When it was my turn to go and find God for myself, I didn’t have to look very hard. My dad showed me how to connect with Him, not in words or theory or religion, but in pouring out my heart in emotion.

So today, you will notice that when I sing, I sing loud. I don’t like music that is sung without emotion. U2 remains my favorite band, because Bono brings raw emotion to every song. And songs like this make me cry…

This is my story (the girl in the phone booth)

As my girls get older its clear that they are heading out on their own, and my influence is winding down, or at least its going to change. Which means that I find myself wondering if I have passed on everything that I can, that truly makes a difference.

That leads me to think about the things in my life that have truly made a difference. When I filter out my thoughts to those things, I am left with an odd but profound assortment of stories. I want to write out those stories for now, for tomorrow, for the next decade… so that my kids can come back here one day and remember who they are and where they came from.

phone-boothThe Girl in the Phone Booth

When I was 22, I was newly married and had my first daughter on the way, and I was a youth pastor in Vancouver. We had no money and were in-between places to stay and were crashing at my in-laws’ house in Langley (about 40 minutes east of Vancouver). I got it into my head that I could be lead by God in my day-to-day activities and I would think about this while I was driving. I would ask God to lead me, and show me where to go and then I would be driving down some street and “feel” like I should go right, and so I would take the next right and I would “feel” the next turn and the next turn until I was either mostly lost or trying to turn up a one-way street or something.

No matter how many times I ended up somewhere ridiculous I became committed to this experiment… and it was obvious that I was not hearing God almost ever. In four or five months, I probably made 20 or 30 of these side trips that went nowhere.

Then, one night I was driving my brother in law home and I was within a few blocks of their (our) home and I “heard” something that sounded completely different than all the other times and it said, “keep going straight”. I told my brother in law about my experiment and he was excited about it and so I kept going, and it kept saying “keep going straight”. The road went from being a major road to a smaller road, to a residential lane, and I was about to give up when I saw.

On the corner up ahead of me was a strange scene. There was an old phone booth with a girl inside. Outside the booth was a car with two people, one inside the car and one outside the car. The girl in the booth was crying and had her foot up holding the booth door closed and the guy outside the car was screaming at her. I knew right at the moment that I saw that scene that we were there to save that girl.

My brother in law got out and started talking and then yelling at the people in the car, while I convinced the girl in the car to come with two new random strangers. She did not need any convincing and ran to our car. My brother in law and I got back in and drove away and made some attempt to make sure that we weren’t being followed.

Here’s her story.

She was from Kelowna and had run away from home. She arrived at a big mall in the Vancouver area and was befriended almost immediately by a guy with a small entourage of friends.  They gave her food and a place to crash and some clothes and probably some drugs and it was great for a few days.  Then the guy explained to her that he’d had a bad turn of events and needed her to do something to pay for all the stuff he’d done for her… and she got scared and somehow got away from him. I have no idea how she got to a phone booth deep in rural Langley, but somehow she did and the people in the car were ‘his’ people and had tracked her down and were trying to get her back.

We took her to my in-laws’ and my mother in law looked after her and she acted like it was the most peaceful moment in her life. It was very late, but we called her parents and they were overjoyed to hear from their daughter and they drove all night to come get her. They were there early in the morning. And I never heard from that girl again… can’t even remember her name.

I don’t know if she had any clue the living hell she was about to enter. I don’t know what kind of hell she lived in that made running away seem better. I don’t know a lot, but what I did find out for the first time, is that an average guy can be lead by God if he listens. And I learned a lot about how God values people, because it was His direction to save that girl.

I wonder how different the world would be if more people tried to listen and offered up a little time once in a while to do something unexpected. I wonder how different the world would be if I did that a little more often. I wonder what ever happened to the girl. (If anyone in the Kelowna area knows a lady in her 30s that has the other side of that story, I would love to meet her again.)

But, for my sons and daughters, this is one of the things in my life that changed me and made me a bit of who I am.

5 Years Ago Today

5 Years ago today, Angelica might have had mono because the antibiotics weren’t working so it wasn’t strep.

The closest "before" picture I can find is almost a year before, Aug 2009.
The closest “before” picture I can find is almost a year before, Aug 2009.

5 Years ago today, we went to the family doctor to get checked out.

5 Years ago today, Angelica got a routine diagnostic blood test.

5 Years ago today, I dropped Angelica off at home and headed in late to work.

5 Years ago today, I came home from work and helped make dinner… Roast chicken with potatoes and veggies and gravy.

5 Years ago today, the phone rang during dinner. Our family doctor called our home phone from his home phone at 6:30pm.

5 Years ago today, I heard a word that I had heard before, but this time was like hearing it for the first time. For the first time “leukemia” was relevant to my family; to my daughter’s life; to my life.

5 Years ago today, we packed bags, though we had no idea what to pack or what would come.

5 Years ago today, I sat on the side of my bed, in the stillness of my room, holding some clothing in my hand, and I cried. For a few seconds I cried, then I prayed, “Father, I can’t do this. Just tell me how it ends.” Then I heard, “She will be ok, but you have to take this journey with Me.” That was all I needed.

5 Years ago today, I left my 9 month pregnant wife, and took my very sick daughter to BC Children’s Hospital.

5 Years ago today, we signed in to the ER and sat waiting, for what seemed like too long, though they were waiting for us. A young ER student doctor tried to give us hope – false hope – that it might still be mono; it can give a false positive.

5 Years ago today, the Oncologist-on-call was Jacob Rozmus. If there was ever a doctor that was gifted to work with very sick children and their parents, it was Dr. Jacob. Though we passed in the halls a number of times in the years to come, it was the only time he actually worked with us, and one of the only times we talked… that I can remember. He told us to not have false hope. He explained what we were facing. He told us details and answered questions. There was a kindness and a peace in his voice that I can’t explain.

5 Years ago today, an orderly with a wheel chair brought Angelica and me to a wonderful and horrible place; we signed in for the first time to 3B. (few words/numbers/letters/symbols hold as much emotion for me as “3B”)

5 Years ago today, I met parents in a small lounge that gave me advice and encouragement, and even gave me some of their fears. As I write this out today, I remember two children lost, who’s parents I met that night.

June 17, 2010The official beginning would be the next day, when we met the amazing man and doctor that would oversee Angelica’s treatment. But the day of June 16th, 2010 stays permanently etched in my mind; the events, the colors, the details, the words, the emotions, all permanently burned into my mind. It was almost 2 1/2 years later that I got to stop Dr Jacob in the hall and thank him for that night, what a difference he made.

There was a peace in the chaos and fear and pain, “She will be ok, but you have to take this journey with Me.”

I’m not sure why today is so significant to me, but it is. For some reason making it as a family 5 years from that day seems unbelievable. It is unbelievable. In the moment, you can’t see tomorrow… there were years of not seeing tomorrow. Looking back and seeing 5 years brings a lot of things into perspective. I am grateful to all the doctors, and staff, and family, and friends, and strangers who helped, and carried us. I am grateful that today, 5 Years later, Angelica is graduating from high school with amazing grades, a bright future, rock solid faith… and most importantly, she has life.

Why I run a paper route for less than $4/hr.

Today when I finish my day job, I will help my son, Jeremy, load a cart full of local news papers.  We will then set off around our neighborhood and deliver papers to 138 homes.  When we work together it takes almost an hour from loading the cart to cleaning up and putting everything away. And as a reward for our efforts, Jeremy will get about $8.00.  When divided by the two people working for this, it works out to $4/hr. In my estimation, that’s a crappy way to earn money.

So why do it?

news-deliveryJeremy is on the autistic spectrum, deals with anxiety and severe ADHD, and he is 14. Teaching him anything on a good day is difficult. Teaching him to do something that he doesn’t want to do is impossible (and I’m being literal there – impossible like pigs flying or Republicans liking Obama). But Jeremy is motivated by money… or the thought of money… well, when the mood strikes he could possibly be motivated by money.

A while ago Jeremy heard that there are rare earth metals used in the manufacture of computer motherboards, like iridium and gold. So he started a collecting old electronics so that he can smash them and then use a soldering iron to remove electronic bits from the motherboard. When presented with the reality that there are about $0.03 worth of value in there he doesn’t give up on the venture (autistic people don’t change gears)… he just figures that he needs 1,000s more computers to pull apart. You would not believe the amount of plastic and little bits of wire and little bits of transistors and capacitors and such piled up in his room and hallway outside his room and in our garage.

For some reason he got interested in having a paper route. He helped a friend in our neighborhood for a month and at the end of the month he got $50. That’s like enough money to buy 100 garbage computers. He got excited, and then he heard that the friend got wise to how crappy the pay was for the effort and was quitting. A few days later I got a call from The Langley Times and they asked if I was ok with Jeremy running a paper route and they needed to confirm something about his address because he was getting a paper route starting the next week.

Jeremy somehow figured out which newspaper was in question, found the phone number for the paper, called and asked to talk to the person responsible for hiring paper boys, talked to them and got his name on the waiting list for the paper route… all on his very own. This is a remarkable feat for him. How was I going to say “no” to that kind of initiative?

So the first day I ran the route with him, partly to help him, and partly to make sure that he actually knew what was required of him. There are two things that I got out of that first day that have convinced me that there is no better use of my time than running a paper route with my son.

First off, I saw some of his brilliance.  Not only did he know the job, but it turns out that he may have an eidetic memory. He remembered all of the homes that have special instructions (deliver two here, put this one under the mat, don’t deliver to this house, etc), and there are a few.  I’ve been doing the route with him for almost two months now and I still can’t remember half of the instructions, but I can ask him and he always knows and never looks at the instruction sheet. In all the effort of raising him, I don’t often get to enjoy his gifts, and too often am focused on redirecting and correcting, which leads to constant tension between us.  I get to just enjoy what makes him great when we run the route together.

Secondly, I get to teach him something valuable in a way that means something to him. The first day that we had the route, I put on actual running shoes, grabbed a stack of papers and ran… with haste. Jeremy kind of ran to keep up with me as we each delivered papers to opposite sides of a street.  When we finally met again to get more papers from the cart he asked between pants and heaving breathing why I was running.  I told him, “I only know one way to work, and that’s to work hard.”, and with that I turned around and kept running. He kind of ran / walked the rest of that day.

I realized during that first day that I was going to teach my son something valuable. My dad didn’t teach me everything I needed to know about life. But there are a few things that my dad did teach me that I only know because of him. One of those things is to work hard. Not just to work hard, but to work harder and smarter than anyone else around. Not in the context of a competition, but that I am capable of hard work and hard work pays off.

I remember my dad working along side other people, building a church in Mississippi when I was a little boy.  He was part of a work bee, hanging dry wall and painting and there were guys there that were bigger and stronger and more experienced, but he kept up with them. Then he would go back the next night when no one else was there and do more. He would come early and stay late and didn’t take breaks till the job was done. Not only is that church building still standing 30 years later, but it withstood the eye of hurricane Katrina and was used as part of the staging ground for disaster recovery. Seems like a well-built church to me.

That kind of working hard has opened a lot of doors for me in my life. I don’t care if Jeremy delivers papers or not. It really isn’t a great way to make money. I do care that he learns what I learned about working hard. So I run beside him (or slightly in front of him) and show him what I think working hard is all about. After almost two months it takes a considerable effort to stay ahead of him, because when he’s about to deliver papers, he puts on his running shoes.

Music and Lyrics

My mind works different than my wife’s. She hears the beat; I hear the lyrics. I think that songs and music are powerful and fuel your soul, and that the lyrics and even the emotion of the artist affect you in some way. Another odd reality of my brain is that it plays with the meanings of words, so I don’t just hear the words; I hear the raw literal translation. This makes songs with weak lyrics grate on the core of my being, and of course I have to air my frustration with my kids. So the meanings of songs is a common conversation that I have with my daughters.

I am rather proud of Xandra at the moment, because she has ruined this song for all of her friends. Her friends will be walking in the halls of her school singing, “Stay With Me”, and turn to her with dreamy eyes and say, “I love this song, its so sweet.” And Xandra will reply, “Why?!? Its awful!”, which produces stunned and confused looks.

Because she is my daughter and because we have talked about this a bit, she will then explain, “Listen to the words… let me paraphrase it for you.” “I don’t love you. You don’t love me. But I’m a man who has ‘needs’, and so you should lay with me.” Then she will show them the actual lyrics:

Guess it’s true, I’m not good at a one-night stand
But I still need love ’cause I’m just a man
These nights never seem to go to plan
I don’t want you to leave, will you hold my hand?

Oh, won’t you stay with me?
‘Cause you’re all I need
This ain’t love it’s clear to see
But darling, stay with me

Why am I so emotional?
No it’s not a good look, gain some self control
And deep down I know this never works
But you can lay with me so it doesn’t hurt

To all the young women out there trying to figure out the world, let me say something to you. You are worth more! You deserve to be loved! A real man’s greatest need is to receive respect and have honor. Sex and intimacy is not a need or a right, and no real man will ever make you feel like you are indebted to share those.

And don’t sing along with songs that suck!