Friday, October 28, 2011

Not enough cool whip containers

Cool whip containers, why would one keep them? Sure they make a great alternative to tupperware, but how many is too many? Is there a possibility that there wouldn't be some at the store next time we visited?

When my grandparents went into a nursing home, there were hundreds of cool whip containers found at their house. Knowing that they grew up through the great depression and having an appriciation for saving money and resources it isn't too difficult to see the desire and the need to save items like cool whip containers.

It is easy to observe and see the characteristics of a hoarder in the term of physical items, and it is even easy to understand the mentality of why people would hoard if the worry was not having enough.

What about the other aspects of life that people hoard or worry there isn't going to be enough? I think about this alot with people with terminal diagnosis'.

What if there isn't enough time with my loved one? Does this knowledge give freedom or paralysis? Does it help me value each day or does it weigh me down to the point of living each day in dread?

The same is true with the emotional aspect, if I give myself fully to being emotionally attached am I going to have enough emotional energy for tomorrow? Am I going to be hurt, disappointed, and empty at the end of the day or life of my child?

Worry, the unknown, fear, disspointment, unfullied expectations, drive many of us to do a lot of destructive things in our lives. I can only imagine this being part of why the divorce rate of parents of special need children is somewhere around 80%.

The engagement factor is such a struggle for fathers of special needs children. It may not be intentional, it may be not knowing how or what but many are very disengaged. I find it easy to drift into this area without being intentional.

It is easy to diagnose a hoarder of stuff, it is much more difficult to see those who hoard their emotions.

Each day it is a choice not to hoard my emotions.

Sunday, October 23, 2011

Stuff- what do we do with it?

A new "hobby" has arisen in our family. Well maybe not everyone in the family embraces it, but most of us are enjoying buying abondoned storage units.
About 4 years ago I went to my first storage unit auction and there were about 5 people at the auction, but with the popularity of the television shows the crowds at most auctions are from 50-100 people.

People rent storage units for all different reasons, but one of the main ones is there is a lack of space in their current living quarters. The garage, shed, attic, and every closet is full. What do we do with all this other stuff?

Most of the items we have found have been in these units for years. People have lived without this stuff for years if not decades. Work went into moving all of these items into these units. There was a conscious effort to keep these items (until they stopped paying).

Why in general do we love "stuff" so much? Toys for adults and kids both have a very short life span.

Yesterday was the first day Kyle, Ellyse, and Ayden attended an auction with me.It was uneventful until the unit came up for auction with a vintage pacman arcade game.

On Wednesday nights Kyle and I watch storage wars and he loves to immitate the different bidders. He raises one hand in the air and says in a long slow draw "Yuuuup."

So he understood to some degree what it meant to bid on something, so in front of us is a unit up for auction with this vintage game in it. I am standing with Kyle and all of a sudden his hand goes in the air and a "yuup" comes from his mouth. Kyle had bidded on the unit without any prompting. He only did it once before we moved him away and didn't let him win.

Thoughout the remainder of the day Kyle kept explaining that he wanted the Pacman arcade game in his room.

Stuff- it can give us comfort, it can lesson pain, it can bring us entertainment. The Pacman game may last longer than the average toy, but soon the novelty will wear off and we'll have a 500 pound eyesore that we will have to move.

Our family struggles with stuff, and sometimes due to Kyle's condition we want to buy him things. But that isn't the answer.

One day if we aren't careful we'll have a storage unit or 2 or 5.

In the end stuff doesn't make us happy.

Friday, October 21, 2011


Escape- hiding from pain- having a semblence of normality- trying to be positive. Reality hits some days and bring things to a screeching halt. The disease hits hard and brings a heavy blow. It is much like an earthquake temor, it shakes everything, it may not do damage this time but one day the big one will come. It is in the back of our minds.

We had some harsh reminders this week. As we have begun to get to know others in the Duchenne community we have seen the progression of others older than Kyle. Then came word that one of the co-writers of the book project I took part in- son died. He was only 14, dmd had struck again. The dose of reality hit us in the face.

Yesterday morning as Jill prepared to go to a meeting at Kyle's school she knew it was going to be difficult. This meeting wasn't about his behavior rather it was about his failing physical health. Discouraged I recieved numerous text from Jill- the school wants Kyle to have velcrow flies on each of pants, they want him to have a "pee can" type bottle. The reality of taking Kyle into the bathroom is a tough and difficult process. No one wants to hurt him or have anyone else get hurt.

We are in the process of making a decision about whether to keep Kyle on his steriod or take him off it ue to his lack of walking. A couple of weeks ago Jill observed that watching someone stop walking is the opposite of someone beginning to walk. From stable to shaky to using a wall to walking around the furniture.

Doses of reality are cold and sharp but we go on. The tremor has shaken but it didn't knock us down.

Pray for us as we live in this new stage of duchenne.

Tuesday, October 18, 2011

Rythms of Life

Words like peace, serenity, quietness, slow, and restful aren't words to describe many of our lives. Those words are replaced with frantic pace, rushed, loud, busy, on the go. This is especially true with kids.

We as a family have been forced to slow down, physically we can't go at a hurried pace. As much as we would want to be involved in many more activities, relationships, and other forms of busyness we can't.

I have recently been reading about the concept of Sabbath rest. The idea that God created the world in six days and on the seven day rested. That is a novel idea, an idea of letting the busyness of life go for a day and spend in a relaxed mode. Even in the context of a day I have had to the ask the question when do I recharge?

In the life of a parent of a special needs child rest is a concept hoped for yet not realized most of the time. What we as a family have found is slowing down to a Kyle's pace. Going to the store or out to eat takes much longer now due to unloading and loading the wheelchair. We aren't nearly as "productive" with our time as we once were. But things go much more smoothly when we realize that we move slower and are patient through the process.

Jill and I have joked many times older people can only do one thing a day. I.E. her gandparents would plan their day around going to the dentist, or going out to eat for lunch. But those wouldn't happen in the same day.

I guess we have arrived at that stage of life earlier in life. As we have begun to patiently and slowly move in life the results have become more peaceful and restful.

The different issues of our lives haven't changed. We still have as many worries, and problems as we did before but our attitudes have changed. Sitting at home all day on Saturday is not unproductive. It isn't regretful if we really don't have a plan other than relaxing, and enjoying each other.

As we continue to understand our rythms of life it has brought us much peace and the frustration level has dissapated.

Monday, October 10, 2011

Inspiration from the weak

The dolphin couldn't jump higher than other dolphins, it could talk as a human, in most ways it could only do normal dolphin activities. Yet this one was an inspiration, one that hollywood made a story about. I am talking about Winter the dolphin with the artificial tale.

Why was that story so important? What drew many people in, why is there a successful website to watch this dolphin?

There are those who are great performers in life, those with natural talent and abilities who can do things the majority of us can't do. The athletes, the talented leaders, artists in every field of work. In general we respect these people and if they are extremely special we remember their names and their story. But very infrequently are we are inspired by these people.

Inspiration comes from the unlikely stories, the greater the tragedies the greater the inspiration. A girl surfer who had her arm bitten off by a shark. I suspect not many can name any other good young surfers. Yet we remember this one story.

What are the stories and people that inspire us?

Last Thursday night while Kyle was a "football player" for a night I thought through how many "normal" kids play football on a regular basis. A good percentage of kids play at least some level in their lifetime. It really isn't a big deal, it is normal. Yet it was a very big deal when Kyle was presented with his football jersey. He will never earn one with his play, he will never be able to do what many take for granted, yet for that one moment in time he was a small part of this team.

I was curious/concerned how Kyle would be recieved by the team. A bunch of high school boys, athletes. How would they view Kyle? In the end I had nothing to worry about, by the time we left Kyle had 50 or so new friends.

He shook hands and fist pumped more than any other time in his life. He was able to be one of them in a strange way for an evening. Laughing, joking and being on the field. It was small and in many ways insignificant time spent with these guys.

After Kyle got comfortable he started telling these players, that when he got older he was going to play football. A couple of the bigger lineman were standing with him when he said this. I didn't know how they would respond. I was uncomfortable so I didn't know how they would react. But in gentleness and sincerity they affirmed Kyle and said something to the effect of we hope so. They leaned over and told Jill we are so greatful we have this ability that we take for granted.

Kyle isn't like them and probably never will be physically, but that doesn't mean he doesn't have anything to offer. Kyle is very simple minded and doesn't even realize that he is giving off hope, love, and shows of determination of living life, even though the simple things in life are difficult.

Thursday, October 6, 2011

The pictures say it all

Pictures from Kyle's night shooting a promo against duchenne with the Valpo football team.

Tuesday, October 4, 2011

Disabilities show God's glory

Since the day Kyle was diagnosed I have been on a quest to understand, I have wanted to understand through a lense of faith. I have wanted to put words in God's mouth, I have wanted to believe those who have said God is physically going to heal Kyle.
I don't think I have a total grasp on the theology of disabilities, maybe a start or maybe a few concepts that I semi-understand. But it plagues my mind, and thoughts. My mind tries to grasp who God is, why He would allow someone to be born with disabilities, and my own faith.

As I think about the theology of disabilities. I start with the premise that God is sovereign. God is all knowing, all powerful, and many other attributes. (a great blog to learn more about the attributes of God is ). If God is all of these things why does he allow disabilities? is it a product of sin and mankind? Did God intend every human to be "perfect" or normal? When a person with disabilities dies what are they like in heaven? Are they "normal"? I am not sure I was right in some of my previous thinking. I think the Bible is clear there won't be pain, crying, death (rev 21:3-4). But to think that someone with a disability does not reflect the glory of God is wrong. Does sin cause disability?
John 9:1-4 brings up so many of these issues. The disciples much like us think disbility is caused by sin. Jesus answer God's works might be revealed in him. Exodus 4:11 The LORD said to him, "Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD?

What does that say about God- how can a God make someone that isn't perfect? Maybe perfect looks different to God than us.

1 Corinthians 1:27- But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.

I can't give an answer or build a theology that is 100% correct there are so many things I don't understand, but yet I believe God fearfully and carefully made individuals with disabilities. They bring God glory in ways that many of us can't. I am not going to put words in God's mouth nor am I going to try and make the Bible something I want it to say. If those with deformities bring glory to God why do we miss it? How have so many societies banished those with special needs to the side, how have so many churches viewed those with special needs as a problem and not as someone made in the image of God? I can't answer any of those questions other than for myself.

What happens on the flip side when those can see God through disabilities? What happens when God's glory is shown? Maybe it is more than we realize but our eyes are shut, or we are too busy avoiding that we miss it?

God please let us see all of the people you created through your eyes and your lens and let us see your glory through each person.

Monday, October 3, 2011

The one thing that Duchenne can't effect

This is going to be a non-medical voice. I am not the expert, nor do I understand how this works medically, I just understand the practical implications.

To give a brief recap of duchenne it breaks down the muscle, starting with the ankles, wrist and moving inward. One doctor described it as each of us has a covering over our muscles and Kyles (and everyone else with duchenne) covering is like swiss cheese and the dystrophin seeps out. The reason this disease is deadly is because it eventually attacks the heart.

Jill is the medical wizard in our family, since the beginning of Kyle's diagnosis she has read, studied, and engaged many experts on his disease. From a medical standpoint she can explain and understand the working of this disease and the human body quite well. She has read numerous stories of families with duchenne's. I have a difficult time reading these stories because I know the outcome. Recently there was a man in Ohio with duchenne's who just celebrated his 40th birthday. Some experts believe that he has lived the longest with duchenne's. So the prognosis of this disease is not good.

With all the ravanging of the body duchenne's does it doesn't affect one thing physically. It doesn't effect the facial muscles. It attacks and destroy's every muscule from the neck down. I didn't know this until one day Jill was reading and told me. It may not seem significant, but there is one important thing that you can do with the facial muscles- SMILE. Duchenne's is destroying Kyle's body, we can see it on a daily basis. He wasn't what he was 6 months ago, but with all of that. This disease can't take the smile of his face, both literally and figuratively. We believe God has blessed us with this gift, and it may be small in the big scheme of life, but this a blessing we get each day and for that we are thankful.