What is worth fighting for?

"My guidance counselor told me I had potential and could do many things the problem was there wasn't one thing I was passionate about." Were the words of a 23 year old young man I was talking to this week.
Through the conversation we had, I tried to pull out some sort of passion. In the end the best I could do was find out his passion for sports.
I wonder if many people in life have a passion that is worth fighting for? Ideals, principles, or people that they would go to any lengths to preserve.
Sure many of us have opinions, beliefs, family, jobs, careers, and even faith but do these become so familier that we become apathetic.

I love observing people that are determined, and focused. Curiousity and trying new things mark my life. So I really do appriciate those who are steadfast and solid.

Some are determined and focused because they have to be. Kyle has to be determined in order to get through each day. It is hard work for him to do the simplest tasks. It is work for him to go to school, eat, and go to the bathroom. Determination marks his life whether he wants it to or not.

Yesterday I met Bart. Bart is determined to provide for his family. Bart is disabled, an ex offender, and doesn't have much going for him. Yet Bart is determined, a hard worker, someone who is going to do all he can to provide for his family.

As I think back on this year in many ways I would describe it as a year of brokeness. One of the issues that has hit me the hardest is seeing many family and friends marriages/families split up.

It would be very easy to perscribe the items worth fighting for and those that are not. But the only one I can say that I believe is not worth fighting for is happiness.

I say this because for some reason we think that happiness is the goal in life. We (I) have the mentality that if I feel secure financially, safe from scary people, and have health than this what life is about. Once I have achieved these than I feel happy. Yes these are all the things worth fighting for.

But the questions is are these the things we fight for? Sure all these things are great but how much control do we have of these things?

Happiness- I don't believe comes from the logical places. Last week I had a friend text me and say I got a bonus from work do you know any families that coud use money this Christmas? Through the money given two families were blessed. Both have been struggling and fighting for marriages and survival.

This morning a man who lost his son to suicide is leading a group of people to build a bedroom for a family whose young girls lost their mother earlier this year.

Keeping away from pain, as much as try can we control it? Yesterday as we watched in horror of the conn, school shooting that was a good town in a "safe" neighborhood yet still tragedy struck. We can not control the diagnosis of cancer. So is pain aversion worth fighting for?

How will we deal with pain, unmet expectations, and the plethera of other things that can mark our lives? Will we fight for people? Will we fight for justice for the oppressed? Will we use our resources to help others?

As I think of Christmas I think of the story of God sending His Son to earth to live a life that was perfect in the sense of Jesus being perfect far from perfect in the sense of wealth. To die a painful and horrific death and take an eternal punishment that was meant for us.

Brokeness- that is a word that describes many of us and our world. I want to fight for wholeness, restoration, and forgiveness. That is what Jesus fought for and I want to fight for the same thing.

Preserving Life

Life- there are many cliques to describe it, there are many different ways of explaining it. In the end we all enjoy it to some degree and want to live as long as we can.

Today I was asked in prison self defense training "if you were attacked would you attack back physically to main or kill?" Of course the answer should be yes I want to preserve my life. But is perserving life the point of living?


Life is it about the length, is it about the perserving of it? Jesus said "whoever who loses His life for my sake will find it." This may be literal but in many cases this will be proverbial. Do we hold onto life so tightly that we try to love life more than anything else.

Do we love life more than anything else? Do we love perserving our breath here on earth to the detrimate of others?

While I pondered the question of maiming someone else to perserve my own life in prison. It brought me back to the reason why I walked into a prison freely in the first place. It was to share the hope, love, and life of Jesus. To me worrying about perserving my life goes in direct opposition to Jesus and the way He lived His life.

Jesus' gave His life for something greater than Himself. He gave Himself for the love of humanity.
His life meant something. Does my life mean something? Is there concepts, principles, or people that I would be willing to give my life to?

Life takes on a different tone when living with someone with a life shortening disease. Death and life is a conversation that can't be shied away from. We as a family are going to experience it sooner rather than later. How does this affect the way we live each day? It is impossible for us to preserve Kyle's life, we may prolonge it but the outcome is still going to happen. Reality it is going to happen to all of us just it is more immenent when we think about Kyle.

So what does that mean? For us there might not be a tomorrow to do all the things we wanted to do. Each day is precious but it is short. The words that we want to say have to be said today, the experiences we want need to happen now, the example we want to share needs to happen before it is to late.

As I think through the question of would I maim or kill someone trying to take my life? The answer is no because preserving my life for the sake of preservation is not the way I live my life.

what is different?

What started off as a good idea, no a perfect idea went horribly wrong. In believing that God created man and earth to be perfect I believe that the accounts in the beginning of Genesis are a depiction of perfect harmony.

I have been thinking a lot lately of what makes what we experience here on earth different than heaven. The pain, hatred, sorrow, pride, bigotry, was not what God had in mind when earth was created.

I have had numerous people ask me of late "why does God hate me?" The question means  the circumstance in my life are so bad that if there is a God he must be punishing me because it is so awful. Is that true for anyone? I don't believe it is, but I do think that there is enough garbage that happens in the world to make us think that at times.

What would it look if life was full of perfect people?  That is one small aspect of heaven. As I am thinking about this what does it mean to be perfect? Even when I do the "right" thing most of the time my motives aren't pure.

The idea of perfection when it comes to people is hard to comprehend. People do good things, and there are great examples of love, sacrifice, and courage in our history. But there is also much more examples of anger and hate. It pops its head up in all of our lives. What does it look like to have a pure motive? A pure motive is one that does not put self as the top beneficiary. In life we look at every problem and situation with us as the center. How does this affect me, my beliefs, values, and quality of life?  It is extremely hard to even think of life without being selfish at the core.

Trust, faith, patient, kindness, and self-control (among other attributes) do not come easy or natural to us. They may come natural in certain settings but put us in the tough or threatening situation and those attributes dimish very quickly.

I fully believe one of the main differences between earth and heaven is not having self at the center of every problem or decision.

It is interesting to think about trusting God, if God indeed created everyone than there is no bias. There is no bias toward certain races, gender, special needs, intellegence. How come I find it easier to trust humans who have biases (we all have them) then a God who is above bias?

Life on this earth will be difficult and imperfect in so many ways, but the desire for something perfect has to be one of thoughts when I think about heaven.

We all have normal childhoods because we don't know any different

Jill and I were talking about the many questions that we have been asked about Kyle. Many are asked about his sleeping habits- "does he sleep in his wheelchair?" "Or how does he go to the bathroom?"

Most are asked by children full of curiousity and wonder, not being exposed to handicapped children they don't know. One of the basic premises that surround these questions "is Kyle like us?" or "is he inhuman in someway?"

It is very easy on a very basic human level to see those not like us and have second thoughts or aprehensions that there is something wrong with them.

As a child we have thoughts that everyone's homelife upbringing is the same as ours. Everyone had basically the same experiences as us. Recently one of the guys in my prison class said as a child he thought white people didn't go to church because he never saw them in his African American congregation.

How many untrue thoughts do we have about others because we just assume? We never experienced something or saw it for ourselves so we think it isn't true?

As Jill walks through stores with Kyle and the look of disdain or fear of a wheelchair apears on peoples faces Jill will remark "you can't catch it."

Either consciously or subconsciously we teach our children about other people through the way we act and not act.

There are some things that Ayden and Ellyse experience that is going to be natural for them that would be totally foreign to most. For instance Ellyse has helped get Kyle on the toilet and it is natural. Both of them take Kyle for a walk in his wheelchair. This may not seem like a big deal but there is strength needed and care. It is very easy for cracks and bumps to derail a wheelchair.

Will this affect both of them in their lives, career choices, and the type of people they will be? I believe so. I think that at least Ellyse will end up caring for people in some capacity.

To continue to push ourselves through our prejudices, pre concieved ideas, and the unknown is difficult. But in the end we are cheating ourselves if we embrace untrue notions.

The beauty of souls

Gen 1:26 "Let us make man in our image."

Many people observe God through nature. They can see his handiwork through the beauty of sunsets, trees changing color in the fall, or through snowflakes. These are tangible expressions of God. Some may even see God's beauty through the various animals,and creatures. The originality of a platypus, or the majestic blue whale. These again are beauty that can be seen and appriciated.

I have been thinking a lot lately in the beauty found in people. Not physical beauty but beauty of the soul. If man was indeed created by God there are His fingerprints on each of us. Now I fully believe that we are sinful people and have a will of our own and do horrible things. But, I do believe there is beauty found within people.

It is very easy for us as humans to be around people that sound, smell, think, and live like us. No matter what our culture is we tend to gravitate to those that reflect our way of living. It is difficult for us to be around people that don't look at the world as we do. It is difficult not to become frustrated and call people ignorant, misguided, or just plain wrong. I believe that our view of God is directly affected by this. When we are only around people just like us who believe in God the exact same we do, this becomes the only picture we have. God must be this way because all of my friends believe this.

Prejudice may be one of the biggest obsticles we as people face. Prejudices can be against race, economic status, people that are handicapped or just stupid people. Pride swells up and the thought of God loves me more than these because I am smarter, more educated, or have it together is common place.

But what happens when we allow ourselves to listen, engage, and be learners from those unlike us? What happens when we sit at the proverbial feet of those who previously we thought we had little to learn from?

Recently I have gotten to be friends with Eli, Eli grew up a gypsy. I had never met a gypsy before and had all sorts of pre concieved ideas of what a gypsy was. One of the most important concepts he told me that gypsys have is family. The other is faith.  His upbringing looked a whole lot different than mine, his rituals, and even his way he viewed life was different. But as I listened to him, I began to see the beauty of Eli's life. He is a man of faith, he is a man of morals (very similiar to mine). But yet he is someone who I could say all sorts of nasty things about because he doesn't look like me. In our blossoming friendship he has already challenged me in some very good ways about my own life.

Don was a man I met via craigslist who bought a drum set off of me. We were in a parking lot in the middle of a rainstorm when he told me he bought the set for a son who wanted to play in church. Immediately I told him I was a pastor. He then for 15 minutes told me his journey from the church, . through some poor choices he had been ostricized. Don was a drummer like his son, and had been playing and worshipping God at home through his playing. As I was freezing, I was able to say a couple of encouraging words but again I could see God's work through Don.

Joe was another man I met via craigslist. He was a tough steel worker. He had picked up a table I was giving away. Joe had wanted it because he remakes junkie tables and makes them into something beautiful. Joe happened to have a zip drive with former projects and proudly gave them to me. Spiritually came up and Joe shared how he use to be Catholic but he had been going to a nazerene church with his wife. In a steel worker tone he told me he needed God taught in a practical no-nonsense way. He was very confused by catholism but had wanted a relationship with God. Through my conversation with Joe I again realized that God was working in Joe's life in a totally different way.

One last story, I met Garry last week at a storage auction. Garry was an African American man about 45. I had never seen him before and but he seemed very friendly. After the last unit was auctioned off Garry made a comment about my signature crocs I wear everywhere. So not letting a conversation escape I asked him if this was the first time he had been at an auction. He told me yes, and I am here because I fell on some hard times. I was a little confused and I asked did they auction off your unit? He said not here but at the next auction (they did numerous different storage units) they will. He then shared that he had been in California for a while and his son was to keep paying on the unit but had stopped to buy a car. So all of Garry's possessions were to be auctioned off. Immediately I knew I had to do something, but I had to get home so I couldn't buy the unit for him. There was a friend of mine at the auction and I usually don't bid against him as a courtesy. So I approached him told him Garrys story and asked if he could either let Garry buy the unit or buy if and let Garry get the personal belongings out. He agreed. Garry was thrilled. He then asked me if I bought storage units for a living? I told him nah I am a pastor. He then said I knew it, there was something about you that just glowed. Garry texted me that night and said I got my stuff back. I have no idea what happened other than God worked.

I fully believe God works through us every day, He has created us and expresses beauty through our souls. But it so easy to miss this when we are prejudice or so wrapped up in our own problems.

I love the different ways God has expressed himself but one of my favorites is through other people.

Black and white

For the last couple of months, Ayden and Ellyse have a game that they like to play with me. The game is see if I can make them talk or laugh. The goal is for them not to make a noise or say a word. So of course I say off the wall things, or all sorts of other techniques to get them to talk. Usually they are pretty good and can keep a straight face or be quiet. Kyle tried this game out and I learned real quick his weakness. All I had to do was say something that wasn't true and Kyle would correct me.

For instance if Kyle was wearing a blue shirt, I would say he was wearing red and immediately he would correct me. I would pretend that I had his nose and he would feel on his face and say no you don't. Kyle can not tolerate things that are not true. It is a natural instinct. If something someone says does not line up with the way Kyle sees the world he corrects it.

For Kyle the world is black and white, there is truth and there are lies there isn't to much middle ground. He doesn't function to well in decisions that are arbitrary but if there is a right and there is a wrong Kyle will let you know.

There are a few things in life that Kyle would say are wrong- the worst thing you could be in the world is a hoarder. The second worst is a smoker. Third is a litterer. Kyle thinks it is his job to inform our neighbors about their issues.

We walk through our neighborhood almost every night and visit with various people. A few of them smoke, a couple hoard, and even a few litter. The other night one of the neighbors who smokes put his cigarette on the ground and Kyle saw that immediately. He started to complain at the neighbor.  The neighbor was a good sport and picked it up and showed Kyle it as he threw it away.

I many times envy the black and white view of life that Kyle has. It is very easy for me never to make a decision because I analyze it from so many different sides that it becomes muddied and not clear.

It is easy for me to justify all sorts of words I say, attitudes I have, or actions or inactions due to my mood or feelings I have at the time.

Now we are working on Kyle to start viewing other injustice' in life with as much passion and vigor as hoarding, smoking, and littering. He has started to embrace the idea that hoarding in his room might be fun.

It is refreshing, and helpful in our family to have someone that cuts through all the side issues and fluff to the core issues and states it in black and white terms.

Sometimes it is easy to overlook a handicapped person's knowledge and intellect but when we do we miss on simple and profound truths.

Three distinct days

With Kyle's birthday on Sunday I wanted to post a writing I did for the book Saving our Sons and Daughters 2. It came out last spring:

Three distinct Days

There are momentous days in each of our lives, I want to share three of those days that have shaped our family.

Sept 2, 2000-

The anticipation was palpable, this was our first child, first grandchild on both sides of the family.  We knew he was going to be a boy.  Jill had checked into the hospital on Friday morning and finally on Saturday early evening she had a c-section to bring Kyle into this world. I remember the first time I saw him, he was being held by the nurse and he was scrunched up with his eyes closed.  He was perfect, it was exciting, tiring and the beginning of an adventure. We were in our mid-twenties, and we were ready for this new stage of life with kids.

This was just the beginning, the possibilities were endless. Sports had played such a huge role in my life, and I was positive that they would play an integral role in Kyle’s life also.  The first thing we did as father and son was watch a football game. I remember it well it was opening day of the season. It was the Bears against the Vikings. Cade Mcnown had one of his best days as a pro.  The Bears won and life was good.

At about six months we knew something wasn’t right. Kyle was a great baby but he wasn’t functioning as a “normal” baby. He wasn’t rolling over, he wasn’t sitting up on his own.  Throughout the next  couple of years we kept hearing the word delay. Kyle is just delayed, it wasn’t anything to worry about, with physical therapy he would catch up.  No one seemed overly worried, so we were patient.  When he was two and a half we decided to take him to Riley’s children hospital in Indianapolis, during that visit we had a blood test with various other tests done. It would be about a week before we received the results.

 A Wednesday in Febuary of 2003-

It was a typical morning.  I had left around 8:30 for work, and had been at my desk for about half an hour when the secretary told me Jill was on the phone. Jill calmly and softly told me the blood test came back and the doctors believe he has muscular dystrophy. The first question was “what does this mean? Jill said something to the effect of she didn’t have any idea.  My head was spinning, and immediately I did an internet search of muscular dystrophy.  It didn’t take long for my world to crash around me.  As I sat in my office at the church I worked at, I sobbed.  I was sitting in a place where people find hope, peace, and comfort but  I was feeling despair, hopelessness, and anxiety.

We didn’t initially know what type of muscular dystrophy Kyle would have.  There was hope in the initial stages he would something other than Duchene.   We quickly learned that Duchene was the most common form of MD and it was likely that Kyle had this.  I didn’t know all the implications but I did know that this would change life.

There were good days and bad for the next few years, I didn’t know how to respond or react.  I am not sure I still know how.  

There was a loss, Kyle wouldn’t be the person I thought he would be.  There was so much gut wrenching pain in that, each time it would hit me of things we wouldn’t experience together it would be a new wave of emotion. 

 

Today-

There is a huge difference between existing and living.  For much of the last 8 years our family was breathing and existing but we weren’t living. I was disengaged most of the time, trying to escape reality by being over involved in work, projects, and leisure enjoyments.  There were many titles and roles I was comfortable with but father of a special needs child was not one of them.  I didn’t have a road map for what I was supposed to do or how to act.

Then the summer of 2011 came. There were two catalytic moments that changed our (specifically my) life and our relationship to Duchene’s.  The first was going to a family camp put on for special needs families by Joni and Friend’s ministry.  Our church had tried talk our family into going for 3 years. I had drug my feet and not wanted to do it, I was very uncomfortable with the thought of going to a place where I would have to face reality for a week. I was voted down 4-1 in our family vote for attending the camp.  It was that week that began the reengagement for me.  Seeing and meeting other fathers who had dealt with the same moments I had was therapeutic. We laughed, cried and bonded so quickly over our common crisis in life. Seeing these examples was what I needed.

The other moment that changed our perspective was when we received a call from a local foot doctor who asked if he could have Kyle do a sprint triathlon with him. We(I) had focused so long on Kyle’s limitation that we had not allowed him to live life.  The triathlon opened up possibilities that we never had thought of before. After the triathlon Kyle began asking to do activities like sky diving he had never known before. Our conversations began to center on how Kyle can do something rather than lamenting why he couldn’t.

Today is such an important day in Kyle’s life, because we can’t wait. We can’t wish that he didn’t have this disease, we can’t feel sorry for ourselves or for Kyle. 

Matthew 6:34- “So don't worry about tomorrow, for tomorrow will bring its own worries. Today's trouble is enough for today.”

We can’t wake up every morning scared of the future, we can’t dwell on all the horrific moments, but rather have peace in the moments of today.  Today is a great day, we have the privilege and opportunity to spend it with Kyle. Each day brings laughs, tears, moments that will never be forgotten.

I have missed out on moments in Kyle’s life do to my fear and trepidation about his future. No his life didn’t turn out the way I expected but no child’s does.  I believe that Kyle is fearfully and wonderfully made by a creator who knows and loves him. Jill and I have been entrusted with Kyle’s life and as difficult it is we have made the choice that we are going to live one day at a time and not allow Duchene’s to have the last word in our life.  Yes it is a reality, but it is not going to steal our joy, peace, and break up our family. Kyle will have a great day today and that is what we are going to focus on.