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.

When things dont go as planned

This week was a small microcosm of life. Many things planned and an idea of the week would shape up, in hindsight the plans didn't come together. The plans and ideas didn't go as I would have liked them to.
So how does this affect my attitude and the way I treat other people? Yesterday afternoon I was frustrated because some logistics didn't work out, I was tired, didn't want to talk to anyone, and just wanted to get home. As I was grumbling and muttering to myself I realized I was oblivious to my surroundings and the people around me. I was inside a storage unit facility and not 10 feet away from me was an elderly couple struggling to pick up a full size frig.
This poor couple was hispanic and didn't speak much English. I sheepishly laughed to myself as I realized how self absorbed I was. Very easily I helped them out and they were very thankful.
Perspective can change pretty quickly when we aren't so self minded.
The rest of the day I was thinking about the way God works in life. Was my being there at that exact moment for me, for for me to be a help to this couple? How many other moments were missed during the week because I was only concerned about what I wanted to do?  When the questions like where was God when? Is the answer the Christians are too self absorbed and missed the opportunity?

Life is about the big and the small moments. This was a very small insignificant moment, something very simple and something that will be forgotten by all very quickly. But I hope for me this will be a reminder that my life, and time isnt just about me. Actually it has very little to do with me.

A picture of community

We all have the desire to be known and to know others. There are so many hindering factors to this though. When I think of community this means being with people I care about and care about me. There can be this fantasy that when we find a group of people that we commit to, that we will all become perfect and it will be something magical.

As difficult as the commitment to marriage is, the commitment to a community of people is even more difficult because we can bolt without any problems. The only thing that ties us together is relationships. If a community is based on geographic location we can move, or we can dodge any forms of communication. We can basically back out of community any time we would like.

It is easy to be in community with other people when things are going well, when we all agree, when people's dogs don't bark all night. This is when we want and enjoy being with other people. But when things difficult, when we are annoyed then we jet.

A couple of weeks ago I was literally hit what it looks like to live in community with others. We had a storm suddenly blow through our region. At about 7 am it got very dark, windy and we watched out our deck as we got the rain we needed that we had been sorely lacking. About 8 am it was all done and I went to walk out my front door and looked out and saw trash strewn everywhere. It had been trash day and most of the neighbors had put their trash out before they left for work. Somehow our house and two neighbors next to me had all the trash from across the street in our front yards.

I had to leave for a meeting and didn't do anything about it until I got home later in the afternoon. When I got home the trash was still everywhere. So Jill and I retrieved the 6 or so trash recepticles and returned them to where we thought they went. We picked up our yard and the assisted our neighbors as we picked up all sorts of trash.

As I have thought back on that day I have begun to see this as a metaphor to living in community. We get a whole lot of trash in our space. When we really know others we know the good, and we also know the bad. Unfortunately not to many perfect live on this earth and when we are being known and knowing others we see the imperfect side many times.

So what happens when we end up with trash in our yard? Either literally or proverbial? Do we build a fence and to try and keep the trash from coming in our space and try to get it to go somewhere else? Or do we realize that this just comes with the territory and not only clean up the garbage that comes in our yard but also go to our neighbors and help them also?

What is really important?

This is a question all of us have to answer. What is really important? If we don't decide then it is very easy to go along with the culture around us and agree with whatever everyone else is doing.

It is very easy for me to become over involved in different things and negate the important because it has become muddled with everything else.

Decisions happen every day, they may be small but in many ways shape the way we live our lives and effect our childrens lives. The importance we place on money, time, and the stuff that clutters our homes all directly affect us.

As a wise person told me when I was younger "the good is the enemy of the best." It is easy for me to be busy. It is easy for me to be involved in many different projects, different friendships, and good misc. stuff. But is all of this beneficial? Is it all really important?

One of the friendships that has become important to me is one with a neighbor of mine. It has been built on our mutual faith and our interest in baseball. The other night we were throwing a baseball together (boys never grow up) and talking about life. While we were throwing he asked me what were some of the most important things in my life? There were many that came to mind, and I realized there were to many. I say that because as my list grew I realize I don't have time for all of the really important stuff.

There isn't any possible way that I can do everything and be everything to everyone who I deem important. So what gives? What gets shelved? What gets taken out of the really important catagory?

I haven't entirely thought through all the implications of that conversation but it continues to make me think. It continues to push me in making decisions and not just allowing life to control how I spend my time.

As I think about priorities for me there are basically three: 1. Having a relationship with God. 2. Serving/providing/loving my family 3. Serving/investing/discipling other men.  Those I have concluded are the big three. I am trying to figure out how all of those look practically but I have concluded that these are the most important.

It may be easy to say those things and even put them down on paper but it is hard to continually focus life around those that are most important.

But if we don't make the decision about what is most important it will be made for us. 

But this is a Christian league....

This summer I was in a leadership position of a church softball league. It consisted of 13 teams from various evangelical churches from around "the region."  This league has been going on for many years and it is very typical of many other Christian sporting leagues.

Many times when dealing with problems this year I heard the phrase but this is a Christian league. As I began to hear this over and over again, I began to think about what this really means. The people who would bring this up meant a couple of different things. 1. It should be a family friendly enviornment, there shouldn't be cussing, and drinking. 2. It should be moral- there shouldn't be any fighting or dirty play. But is that the essence of sticking the name Christian in front of a sporting league?

I have been playing in church league sports since I was 12, and there really isn't too much of a difference between church leagues city or beer league sports, except there is more whinning in church leagues.

This may come as a suprise but church leagues are made up of people just as the city and beer leagues are. The difference shouldn't be a suprise that all of the people mess up aren't perfect or occassionally lose their temper. I unfortunately have in my share of sporting events.

The diffference may seem in the beginning when the teams pray, but most of the prayers are for good attitudes and no injuries. I would think in general most people who don't follow Jesus woud want the same things.

As I thought about this quite a bit this summer. I realized that the difference in a church league is the response. The response when we are frustrated, angry, feel slighted, know someone else was wrong. This is where a church league can be different. It can be a place where forgiveness is given and recieved. Where people understand that have been forgiven much so they can forgive much.

This isn't just about church league sports but about life. There are many different facets and parts of faith, but one is what is my response when I have been wronged, when life has given me the short end of the stick?

Bitterness can feel like such a good companion. Last week I went to a baseball game with a friend of mine and his twelve year old son. The son plays and loves baseball the three of us talked the whole trip of our baseball playing experiences. It was a great time but when I got home that feeling of bitterness crept in why can't I have those times with Kyle like this?

Anger resentment and bitterness can be our natural reaction if let it. After a few minutes of thinking of those thoughts I realized that this isn't what it is about. Why do I get so hung up on the few little negatives in life and not all the gifts that God has given me?

When an umpire makes a bad call I have a choice I can throw a fit (which I have done) or I can move on and continue to play. The same is true with each choice I make in life, the things I can't control do I throw a fit or do I continue to do the things God has asked me to do?

15 years ago

15 years ago tomorrow (July 26 1997) Jill and I were married. It was a blur of a day, so many family and friends that celebrated that day with us. We were beginning an adventure, with many plans and ideas for what the future would hold.
If I had one statement that would sum up the past 15 years it would be "this wasn't what we had planned." I have no idea what the plan would have been but I am pretty sure it wouldn't have looked like this.
Now that isn't to say that this is much worse or even better than the plan, but so different.
One of the statements the pastor made in our wedding is very true. He said something to the effect "You two don't even know each other now." So very true.

It may be the stage of life (30-40 years old) but we have been innundated by many around us going through divorce or husbands abandoning their families.

I am only going to talk from my perspective as a man. I was clueless getting married, as I typical male I wanted to find someone attractive, who was smart, and interested in me and that is about it. Not to much thought other than that, and not to much more. I don't think that is abnormal thinking for most 20-25 year old guys. If that is stilll the thought process when guys are in their 30s than I can totally understand why men leave their families.

As I look back at the evaluation of our marriage I can see many of the different hurdles we have overcome.

The first was the way Jill and I view life- I come from a totally unrealistic fantasy idealistic point of view. I am way too optimistic that everything will work out great, and future ideas are much better than whatever is currently going on. Every idea I have is better than the last one, and it is bound to work.

Jill on the other hand is very firmly realistic, very steadfast, and doubtful until proven otherwise.

Needless to say there were many "discussions" in the first years of marriage. There was so much frustration, and heated words as we dialogued about the ways we do mundane to the very important aspects of life. Finally (and there wasn't an aha moment but many little moments) there was understanding and compassion for the other ones point of view. I realize that many ideas I have will not work and Jill has realized that some of the ideas do have validity. But it has taken much work and communication, and me not sharing every idea that pops into my head.

The second huge hurdle has been with Kyle and the rythms of life. It has taken us ten years to even come close to a plan on how to make this work. Things came still be tweaked (better ideas than the current one) but overall it works fairly well. It has taken a lot of give and take and taking on different expectations to make this work.

From going from a career oriented life to a family oriented life took a lot of work, communication, and willing to sacrifice on both of our parts.

Above everything we have learned it has been by God's grace that we have stayed together over the past 15 years. I have done and said my share of dumb things. But more than anything else it is both of our commitments to God and also each other that has brought us this far.

I was recently reading through Tim Keller's The Meaning of Marriage and there were many good quotes but one that I thought that was fitting for where I was at in life is this:

“In any relationship, there will be frightening spells in which your feelings of love dry up. And when that happens you must remember that the essence of marriage is that it is a covenant, a commitment, a promise of future love. So what do you do? You do the acts of love, despite your lack of feeling. You may not feel tender, sympathetic, and eager to please, but in your actions you must BE tender, understanding, forgiving and helpful. And, if you do that, as time goes on you will not only get through the dry spells, but they will become less frequent and deep, and you will become more constant in your feelings. This is what can happen if you decide to love.”